Men only

[bbp-single-forum 113=$forum_113]Balanitis Xerotica Obliterans  (BXO) is the name that used to be used for male lichen sclerosus.

This page is for men.  It is here because there is far too much on offer for women and not enough for men.  This is your page.  WLSS would like to hear from you with help to build this space into a resourse and support page.  In the meantime, please feel free to leave your comments here to share with other men from every corner of  the World.

A member of the community has requested this link to be posted about circumcision.

adminMen only

Comments 224

  1. pete

    Hi all. if any men want to chat I am often on this site. As you can see from my other posts an l.s. sufferer for nearly 30 years managing to find a regime for controlling to give as near normal life as possible.
    Pete

    1. Lauren

      Hello. I am planing to travel to Italy. I want to try the new Italian stem cell treatment, maybe it could help you too. Is there any man that has tried this treatment ? It would be helpful. Lauren

        1. Tyler

          Hello Pete,

          I am new to this site, so I would like to introduce myself. I am living with LS for 10 years by now (since I was 17). It all started with a little cut at the frenulum. Then there was a little change of colour over the years, mainly affecting the frenulum. I didn`t think that this could be a problem. It was hardly visible. Then 2 years ago more parts got affected and the itching and the “loosing of the old skin” began. So I went to the dermatologist and had an biopsy. LS was confirmed. He told me that he wants to try ointments first before circumcision. I am using Protopic once a day. If it seems to get worse, I am always applying it twice a day. The symptoms totally vanished and I have a normal sex life since 2 years now.
          I still dont have any problems retracting the foreskin, so nothing changed much.
          The only problem is that it seems that the white color is affecting my glans and it is going further and further, affecting ca. one quarter of the glans now. But I dont have any problem in my daily life and when erected, one cannot see the white color anymore.

          I hope we can share our cases here, in pursuit of finding better treatments in future.

          Tyler

        2. Tyler

          Hello

          I am new to this site, so I would like to introduce myself. I am living with LS for 10 years by now (since I was 17). It all started with a little cut at the frenulum. Then there was a little change of colour over the years, mainly affecting the frenulum. I didn`t think that this could be a problem. It was hardly visible. Then 2 years ago more parts got affected and the itching and the “loosing of the old skin” began. So I went to the dermatologist and had an biopsy. LS was confirmed. He told me that he wants to try ointments first before circumcision. I am using Protopic once a day. If it seems to get worse, I am always applying it twice a day. The symptoms totally vanished and I have a normal sex life since 2 years now.
          I still dont have any problems retracting the foreskin, so nothing changed much.
          The only problem is that it seems that the white color is affecting my glans and it is going further and further, affecting ca. one quarter of the glans now. But I dont have any problem in my daily life and when erected, one cannot see the white color anymore.

          I hope we can share our cases here, in pursuit of finding better treatments in future.

          Tyler

  2. Stan

    Hi, Ive been diagnosed with LS today and must admit im a little freaked out by it all. Im a 30 male and have been told that circumcision is the best treatment to stop the situation getting worse. In the mean time ive been prescribed clobetasol propionate cream. Has anyone else tried either of these treatments? If so what was the outcome?

    I uld appreciate any comments from anyone who has experience with this.
    Many thanks

  3. Post
    Author
    admin

    Hello Stan, welcome here. Circumcision is not a treatment for LS. Circumcision is a procedure that is recommended when long term treatment by steroids has failed and the foreskin is no longer able to retract. Over the years, many men have made contact to say that after a dedicated treatment regime of Dermovate/Clobetasol, circumcision has been avoided. Often it is about how often the treatment with Clobetasol is applied and for how long but it has worked well for a lot of men. Hopefully, it will work well for you. Regular massage with emollient creams as well as the Clobetasol can also be very helpful. Please feedback to us on how you are getting on.

  4. pete

    copy here just in case …..

    Hi Stan and welcome, as admin says having read about after effects of a circumcission the problem can deteriorate ….though one man did say he was better. What can happen is the scar tissue after circumcission will not heal fully and the l.s. symptoms spread there. We are all differant so an educated decision has to be made by you.If you read some of my posts I have managed for nearly 30 years by using “clob” dermovate, as and when I need it, eg flare up, itching or spreading of white patches, and a good massage , hopefully if time permits twice a day of emu oil and vitamin e oil into penis particularly the foreskin to keep it supple. Increaes of blood flow to region does I feel help by assisting to remove toxins from region.[ good massage policy].
    Stress is the biggest cause of flare ups with most people so try very hard to keep calm.
    You are not alone, though initially at first it scares the —-t out of you. Keep chatting, talk about your fears, worries and importantly any successes , It all helps.
    30 yrs on and still smiling, still having usable organ….cant be bad….
    Regards
    Pete

  5. sourabh

    sir
    i have ls ….earlier there was no problem with myy penis but suddenly i realized that my foreskin is not retracting when erect so I tried it force fully and the foreskin broke and cracked and nominal bleeding was there…and a scar was left at the site…..ignorant of LS at that time i repeated it again and again time on and the scar increased…….then my foreskin turned phimotic . I then consulted a urologist he told me to retract my forekin and use fusidin on it for craks………………i did the same and my forekin started retracting again though i am partial phimotic today also.
    then after some time i noticed white soft palques on my foreskin o the spot where there was scar it then spreaded and encircled the forekin in a white ring
    i consulted many doctors but they all told it to be fungal……..there was no itching on it neither sorenesss……..the i consulted a dermatologist he told me to use clobetasol and i used it…
    after clobetasol the lesions/plaques got evaporated leaving discolouration
    sir today i have left using clobetasol for 20 ays …it has not reccured but a fair amount of momenterly itching is there the sensation of glans have reduced ………the worst effected part is my frenullum..
    please guide me furthur…………………………evenmore the less knowledge of doctors us also a big problem for me

    1. James

      hi m8 i am an 20 year old boy had the same problems will my foreskin not retacting when erect and had the exact same issues as you went to the sexual health clinic and was told it was something else and giving tablets the white patch on my frenullum never went away after months so i returned today and found out tht it was LS i have never heard of this before so was really taken back and a bit frightened i have been given steriod cream so hopefully that helps but i hope the white patch will disapear as this is ovb a bit embarasing when having new sexually partners and having oral sex as it can be mistaking for an STI.

    2. p kri muth

      hi sourab, i am too from india suffering from the same fucking disease,when i was 23 yrs old , i had undergone circumcision when i was 24 , after that the disease never occurred , in net itself they are giving that the disease will not re occur after circumcision, i was happy till one year, but now i am 25 unmarried small white spots again started below the head of my penis, and i am again fed up ,i dnt think so i will spread like previous …… pz undergo circumcision … i think ur condition will not be like me , u will be all right after circumcision .. circumcision is advantage for u in all ways.. i am praying for u dude .. get well soon ..

  6. pete

    come on guys, there must be some of you out there reading these posts? Be brave come and have a chat, share your experiences and please please let us know if you have found a cure, no matter how small, in controlling pain/symptoms/ scarring….
    cheers
    Pete

    1. london joe

      Hi Pete,

      Firstly, thank you for your invitation to share experiences here. I’ve read many of your posts over the last few years and found your positivity extremely encouraging.

      To give you a bit of background I have had LS for around 8 years now, seemingly triggered by a double immunisation for a trip to India which I’m now wishing I’d never had. Anyway… I just wanted to ask you what your view is on circumcision. I notice in some of your posts that you suggest it should be a last resort. I have only recently in the past few months started to develop some white spots around the rim of the glans. I have read that in some cases early surgical intervention can prevent the onset of the urethral symptoms, but then I’ve also read that it can make it worse. I am interested in your experience and if you know how common the urethral complications are.

      I have seen a doctor in London several times and he was very pro early circ, but I’ve avoided it and have been doing ok generally speaking. Would be good to know your thoughts.

      Many thanks in advance,

      Joe, 35

  7. Les

    Hi,
    I’ve suffered with LS since the age of 11 or 12 years,(I am now 50 years old)
    It has never affected my sexual ability – but it’s unsightly appearance has certainly made an active sex life very difficult over the years.

    I visited two different G.P.’s in my teens (not easy at 15 years old)and was dismissed by both – I even asked for a second opinion I was so dissatisfied at one point – only to receive the same dismissive response from the third doctor.

    It was neither diagnosed nor was any treatment offered.

    So I have just put up with it for nearly 40 years now and my sex life has been practically none existent for the last 20 years.

    It has only been over the past couple of years that I have been able to gain information from the internet and have been able to finally give it a name and only in the last few weeks have I become aware that there may be treatments available.

    My main problem is that almost half my glans is affected creating a very noticeable colour difference.

    Could anyone advise me if it is possible to correct this colour difference with any of the available treatments? Or does anyone know if medical tattoos could be a possibility?

    I must stress that I have no pain or itching – and the affected area has remained stable for much of the last 40 years so I am blessed in that way – but the psychological effect it has had on me cannot be over played.

    Thanks – Les

  8. lauren

    Hello guys.

    I sincerely advise any person having ls to go and get treated in Italy, MD casabona. It is the best treatment available today. Some of the men and women treated claim that 90 % of the problem is gone. Really I do not understand why this is not more known !

  9. lauren

    Md francesco casabona, villa scassi hospital, genoa italy provides stem cell treatment that has worked well for most of those who tried. There are many comments and testimonies of men and women who got treated on alisa, the italian ls webpage. Go there, use google translate and resd the comments. You ll probably feel much better knowing that there is a solution that has worked for many.

  10. pete

    Hi Lauren, it sounds really good but the only draw back for uk person is the cost , we would have to pay for flights, accommodation, treatment etc and I believe we are looking at 2-3 thousand pounds , per treatment, which unless your rich is a no no , well for me at least.
    Pete

  11. sourabh

    i have ls ….earlier there was no problem with myy penis but suddenly i realized that my foreskin is not retracting when erect so I tried it force fully and the foreskin broke and cracked and nominal bleeding was there…and a scar was left at the site…..ignorant of LS at that time i repeated it again and again time on and the scar increased…….then my foreskin turned phimotic . I then consulted a urologist he told me to retract my forekin and use fusidin on it for craks………………i did the same and my forekin started retracting again though i am partial phimotic today also.
    then after some time i noticed white soft palques on my foreskin o the spot where there was scar it then spreaded and encircled the forekin in a white ring
    i consulted many doctors but they all told it to be fungal……..there was no itching on it neither sorenesss……..the i consulted a dermatologist he told me to use clobetasol and i used it…
    after clobetasol the lesions/plaques got evaporated leaving discolouration
    sir today i have left using clobetasol for 20 ays …it has not reccured but a fair amount of momenterly itching is there the sensation of glans have reduced ………the worst effected part is my frenullum..
    please guide me furthur…………………………evenmore the less knowledge of doctors us also a big problem for me
    please reply please…………………

    1. Post
      Author
      admin

      Best suggestion I can offer is to try to see a dermatologist – a different one for another opinion if necessary, but try the dermatologist you are seeing now, ask about reviewing your treatment regime. I do not know where you are in the world but every doctor all over the world has their own ideas and beliefs about treating this condition. If you are in the UK, there are many knowledgeable doctors you could ask to see.

      1. viswnath

        My father has been affected by BXO . If you can kindly be helpful enough to send the UK’s doctor mail address so that I can forward my father’s report & seek for any help required.

        Thanks in advance

        viswanath

  12. pete

    Hi Saurabh, keep chin up, I am very similar, had it for 30 yrs and now its quite bad, if I dont lubricate really well with vitamin e oil or emu oil around the foreskin BEFORE even trying to retract it it would crack / split and no doubt bleed.It is nearly all over my glans also and yes being white looks funny, but it is still usable and that I consider a bonus. I have tried all and even using “clob” it doesnt change colour, so I have really given up hope on that side.
    I am seeing another , hopefully more specialised dermatologist in the near future, still awaiting an appointment, I will then report accordingly if any information can be of help to others.
    Avoid the stress as much as possible. I struggle living with my partners 17 yr old son, he is a shit and we are in conflict most of the time, so I struggle with stress and it shows……the white area has spread again.
    Pete

  13. steveheidi

    HI, well I was told yesterday that I have LS. I cant even pull back the foreskin. Only had the problem less then a year. have been given “clob” by my dermatologist just to try to help as he took on look as told me I was to late for the cream or pills to take any effect and that I would have to have a circumsion. Which Iam up for (pardon the pun) so anybody have any advise on whats it like etc..He also pointed out he would like to do a follow up to see how things went etc.. to help put together a better treatment plan on wether its perferable to take the route of having the snip.

  14. sourabh

    ok thanks for replying…..i want to ask if circumcision can help me……..since i am still 25 and not even married so i don’t know what type of life awaits me further …..whether it will be hell or it may continue like this only………since i have become partial phimotic too….so its a great concern for me too……………ok

    can any one let me know is there any discharge under foreskin in case of LS as i do have a problem…..becoz some times a day i notice very small liquid around my frenulum which very quickly evaporates and has a different odour

  15. pete

    Hi Guys, seriously consider circumcission, look over old posts regarding this and the after effects in some cases. Even female areas which are cut can often flare up again in the damaged tissue areas. Unless there was no other potion I wouldnt consider it after all Ihave read. Plenty of emu oil vitamin e oil massaged in daily and frequently has helped me. After 30 yrs this is how I have kept supple and not torn. Try it first. Nothing to loose. Its too late once its gone!!!!!!!
    Pete

    1. steviep

      When there is a ‘flare up’, how much Dermovate should I apply. I’ve never really had any advice on this. I have been squeezing out about 6-7mm from the tube and rubbing it all over the glans and inner foreskin..

      Although it does seem to clear the red blotches on the glans, I seem to have a couple of sores inside the foreskin that just wont go away (a thin line about 15mm long)!

      Anyone had similar problem?

      1. paul

        Hi StevieP. I too use dermovate and have to use it daily and ahve done so for the last 12 months. It concerns me how much to use . One rule i was given was to apply a pea size amount. I certainly dont use soap just emolients. I sympathise with anybody that has this condition, and it worries me for my long term health.

  16. Matt

    I just found this website, but wish I had earlier. I had noticed that I had white skin or something on my penis, but thought it was just dry skin, although it was pretty unsightly. I was also progressively losing the ability to pee with accuracy and had to try several times to get everything out. I also had repeated bladder infections and went to the ER due to bleeding. I saw a urologist who was clueless about my condition, but referred me to Dr. Jeff Carney at Grady Hospital in Atlanta, who is apparently one of the top experts in the USA on my condition..

    In May, I was diagnosed with B.X.O., a rare, incurable (as they all are except by God) auto-immune disease. Correct me if I am wrong, but it appears to be one of the worst cases ever known. I ended up having 4 surgeries and spent a total of 4 weeks in the hospital. The first surgery was on September 8. It took about 5 hours. Skin was taken from the scrotum to resurface my penis, the hole was relocated, and it was split open and further reconstruction done. A catheter was also put in below the waist line. I was in the hospital 3 days (too short if you ask me especially with my severe reaction to anaesthesia). My mobility was seriously restricted due to the catheter and the pain accompanying the surgery. It took at least 6 weeks for the skin graft to take, and there was a process of bleeding, scabbing, new skin forming, and dry skin going away. I was able to do some contract work for 10 weeks which involved online training in October and driving to potential clients’ homes.

    Dr. Carney said that my urinary canal was likely so damaged by B.X.O. that it would take several surgeries over two years to try to fix it. He recommended that a new urinary canal be created between the scrotum and the anus. I would have to pee sitting down for the rest of my life, and I would not naturally be able to have children. I agreed to do this. I delayed it a bit until after the work ended. I had, you can say, my 2nd and 3rd surgeries on December 15. He expected that the damage to the urinary canal was only in the area of the penis that is outside the body. However, when I was opened up, he found that the damage went all the way to the bladder, which is rare. Thus, before the surgery to create the new urinary canal, which was supposed to take about 2 hours, I had another surgery, taking an extra 4 hours, to clear out this blockage. A skin graft from the inside of my mouth was required. The catheter was relocated to the new urinary canal. I was unconscious at least 9 hours and was in the hospital 4 days.

    There was some discharge coming from the new urinary canal, which was expected, but then it turned to infectious discharge and I became very exhausted and had chills. Five days after getting out of the hospital, I was admitted back into the hospital with an infection that was located in the scrotum. I had surgery on December 27, my birthday, to drain the infection, and a second visit to the operating room to check the progress. I was in the hospital a total of 3 weeks. Once I got out, any discharge cleared up in a few days, and the catheter was removed 5 days later, after being in me over 100 days. I have had no complications since then. Dr. Carney said that I will always have B.X.O. but it will not invade the new urinary canal, but could reoccur on the penis and could be treated by steroids.

    I pray to be completely healed of this disease and ideally experience a creative miracle so my body could be normal again.

    1. Post
      Author
      admin

      Hello Matt
      Welcome to the community here and I am sad to read your story. I run this site and have been supporting people with LS since 1996. I had another man in your situation (in the USA) make contact, many years ago, he had many surgeries too but when he started to use Dermovate (clobetasol propionate 0.5% generic) all his problems resolved and he regained his sex life with his wife. It took me a long time to persuade him to try the Dermovate mainly because of the bad press that other patients are giving steroids on the internet now. If properly used under instruction by a good doctor, steroids can prevent or delay damage in both men and women and also children. For some people, their LS may never progress and using oils and abandoning steroids may be OK for them. The pity and shame of this is that the medics are not usually able to tell us who is going to have progressive disease, like you (and also like me) and who is not. It may be possible that if you had seen a knowledgeable dermatologist at the beginning and were treated with a strong potent steroid and followed up regularly, the damage you have had to endure may not have been as bad.. I am grateful to you for sharing your story Matt and also grateful that you have given the name of a doctor in Atlanta who seems to be above average. I am inundated with emails every week asking if I know of good doctors in the USA, I know some, the leading dermatologists in the USA for LS are Dr Libby Edwards, Hope Haefner and Lynn Margeson. I am in contact with a few women in Atlanta who have LS who see a good dermatologist. Male LS gets less awareness than female and I believe that is so very undemocratic and unfair. It is possible I may be in Atlanta later this year, coffee and meet up if you would find that helpful Matt? Please stay in touch with this site and update us on how you are getting on, particularly if you do find that steroid treatment is helping you to maintain a better life. (Steroids have saved my sex life and kept me comfortable since 1996 and I have come to no harm, do not have thin skin, hardly ever itch or have any of the problems that steroid sceptics speak of. I have only good things to report, even though I have had other challenges. Life would have been worse for me without steroid treatment.) So many people write their stories on the internet and leave them here with never anothe word and it is so good to encourage everyone to write regularly with updates. I pray you will be well too Matt, take care and know that there are others here who will be happy to support you in the future should you need them.

      1. pete

        Hi Matt, welcome and my thoughts are with you. What a story…..I hope you are managing to come to terms with it slowly. Thats the hardest problem, why me?
        You are by far the “worst” case on this forum by far, like Admin, I have read over the last 30 yrs similar cases of mass desruction to the penis and region by l.s.I hope you are “sorting” a regime that helps in your circumstances, I wonder if you can relate back to how it started , how quickly it developed, what if any action you could or may have taken to slow progress down. My reasons are for males who come along now with first signs, if they act quickly , could they reduce or slow progress down. I wouldnt like this story to SCARE some to the degree they consider other options in life, as a previous “samaritan” I am always aware of how what life throws at you can sometimes inbalance one. Keep in touch.
        Regards
        Pete

      2. Helen

        Hi
        I am so very sorry to hear of all the complications you had:-(
        My name is Helen.
        I know I am not a man!!! however I am trying to find out as much as possible on this seriously debilitating disease!!!
        My husband is going in to hospital next month
        for plastic surgery and to re-build his penis he can not pee at all through it properly he has to use a wide neck urine container. He is also diabetic has gout high blood pressure high cholesterol he also is suseptible to infections
        How will he cope please can you reply
        The doctor says he will be in for over a week
        What is recovery like time wise
        Thank you for reading this
        Yours desperate wife Helen

        1. Post
          Author
  17. pete

    i post below a report done many years ago on l.s. I t says “A new approach to the nonsurgical treatment of phimosis is Jørgenssen and Swenson’s 1993 report173 in which clobetasol and gentle retraction were employed daily for up to 3 months and obviated the need for surgery in 70% of their patients.
    So all I can say guys is this is basically what I have done for nearly 30 years, but I have taken in past the “gentle retraction” bit to full massage with vit e oil and emu oil. and I am fully retractable.
    So seriously re consider circumcission, the report also states after circumcission it will often return to scarred tissue area.

    Guess it depends how much you want to keep that little bit of skin???
    We each have to consider our own treatment regime, but dont always take your gp`s word on it, do your research.
    Pete

    1. Post
      Author
      admin

      This reply may be a bit late, but I need to say that the method described by Jorgenssen and Swenson is the method I used to unfuse my clitoral hood! After all, the clitoral hood retracts in a similar way to a foreskin and I did massage with Dermovate ointment twice a day for three months and it did release the fusion. The clitoral hood is similar to the foreskin in as much as it too can be retracted and it also becomes fused. So I felt this was a valid point that was worth trespassing onto the men’s page for.

  18. Peter

    Hey guys, ive just been diagnosed with LS two days ago. The doctor said it is a very mild and small area as it was caught very early. Its just below my my glan. They gave me Dermovate to use for the next month and then have to go back to see how it is going. Pretty upset about this as im only 30 and its having a big effect on my mentally……

  19. pete

    Thanks Admin for your comments, and Peter , its a difficult one and I know how hard it hits you. But TRY TO BE POSITIVE, You dont have a terminal cancer, you will with good regime be able to have a good sex life. If you are not in a relationship, someone who cares for you will understand.
    Please try to be positive, stress really really does have a bad effect on it.
    Get the “why me`s” out of the way, we all ask ourselves that one….why me?
    and try to adopt a positive routine, deal with it.
    good luck, keep in touch
    Pete

  20. John

    Hi all

    I visited my old GP last Summer (I’m 25) with white patches on my glans, suggesting that I might have LS, he told me it was skin pigment loss. Recently I noticed the tell tale waist of tight foreskin causing some discomfort, my new GP told me it was fungal, I used Canesten but it didn’t help.

    I was finally diagnosed with L.S. today by a dermatologist at the local clinic. However he simply gave me a potent steroid based cream, told me to apply twice a day until it cleared up, then to reduce the usage to 3 times per week, and return in 2 months for a check up, when everything will be ‘back to normal’ and ‘completely fine’

    Based on the Doctor’s advise I’m not worried about this, however I’ve noticed a lot of concern on this page.

    What are your thoughts?

    Kind Regards

    1. Josh

      Thanks for posting that Nick. My derm has given me some Clobestasol incase the Elacon he gave caused a reaction so I guess I’ll give it a shot

  21. Nick

    Also this -

    http://www.bad.org.uk/Portals/_Bad/Guidelines/Clinical%20Guidelines/Lichen%20Sclerosus.pdf

    Both of these reviews seem to STRONGLY recommend the use of Clobetasol Propionate 0.05% as an ultrapotent topical corticosteroid treatment, although I personally have not sought a prescription from my GUM clinic at this stage (my symptoms are relatively mild in comparison to some of the above cases).

    I have experienced a dramatic improvement in phimotic skin ‘ridging’, thickening, tightening etc. from the twice-daily topical application of a 25-50% Tea Tree Oil dilution (in Bio-Oil).

    When it became apparent that the surrounding skin was becoming slightly irritated (due to the Tea Tree Oil), I discontinued it. For me, this was after no more than three days.

    I continued applying the Bio-Oil one or two times daily to moisturise the skin, and during this time kept my foreskin ‘back’; i.e., leaving the glans exposed. I’m not sure this would be a sensible idea in the long-run, but in the short term it has protected the affected area from any contact with urine/semen (the latter of which definitely exacerbates the condition).

    I noticed the improvement after three or four days. The ‘new’ skin underneath appears thin and papery when manipulated, and is hypopigmented, but is clearly less prone to cracking or splitting. This may be scar tissue, or simply a symptomatic remission of the disease.

    I feel it is important to note that, prior to the use of Tea Tree Oil, I had already been moisturising with Bio-Oil, and did not use the Tea Tree Oil until I was confident that there was no ‘broken’ skin associated with the ridging.

    Once I am confident that this process has completely run its course, I will be repeating these steps to see if there is any further improvement.

    As a side-note: I have been slightly concerned recently that the area of depigmentation is getting larger or spreading. If I decide this is definitely the case then I will immediately be begging my Doctor for steroid cream! I just thought this information would be helpful for some people with mild cases of lichen sclerosus/BXO.

  22. Jeff

    Hi guys,

    Thanks for being here! I am a 50-year-old Canadian male who was diagnosed with balanitis in February of this year. It is not (apparently) the BXO type, just plain old balanitis. This came on the heels of a diagnosis of a yeast infection in December 2010, which didn’t clear up completely with the OTC Nystatin that was prescribed. I went back to my doc and she prescribed Clotrimaderm-Hyderm 80:20, which cleared up the condition completely after a couple of weeks of use. So from March of last year until early December of this year, I was completely asymptomatic – and not using any creams or anything. A similar condition reappeared in early December 2011, and I applied the same cream. The condition got a little better, but never cleared up completely. So, I went back to the doc, who this time prescribed Lamisil-Hyderm 70:30 and then Ratio-Ectosone 0.1% when things still didn’t get much better. After that she referred me to a urologist who basically told me that I had balanitis and that he would give me Ecocom cream (to be used no more than 6 weeks) and if that didn’t work, it was basically circumcision. Ugh. Guess what? the Elocom cream didn’t work either. I was basically fine while I was taking it, but after stopping its use for 3 or 4 days, the redness and irritation returned.
    So now, I don’t know what to do. Retracting my foreskin has NEVER been a problem for me – and it is not now. But I’m at my wits end as to what to do… Somehow circumcision does not (to me) seem to be an answer. What if I am circumcised and nothing improves?
    Right now I am full of questions and am finding few answers. I’ve read that sometimes antibiotiocs are needed to clear up balanitis. I feel like I should have blood tests or urine tests to perhaps see if there isn’t some other root cause… I’ve also ordered Emuaid cream over the Internet. I haven’t received it yet, but it is looking like my last hope! It apparently has 0.1% phytosphingosine as the active ingredient. Has anyone ever used this? Is it snake oil? Any and all comments would be appreciated!

    Thanks!

  23. larry

    hi there fellow unfortunate sufferers,i was diagnosed with l.s. around 3 years or so back on my first referral.i was treated with increasingly stronger steroids over a period of two years off and on.i had been troubled by it too a mild degree for around 6 months before seeking advice ,thinking that it was just a return of balanitis or some soriasis type of skin complaint though naturally in a sensitive area. the topical steroid applications having more or less failed in fact they seem to be turning the foreskin to tissue paper ie very fine and very taught .so after much thought i opted to have the lesser cut performed,which is the removal of the frenellum which was badly scarred,a partial if you prefer. any how as i type i am in my first week of recovery,and i have been told infection aside it should take a total of around 4 weeks or so before i can get a better picture of how it has went.so its fingers crossed ,coz i certainly aint crossing my legs. keep positive folks any disease or condition is best aproached from an angle of positivity no matter how bad.

  24. pete

    Hi guys, if any of you who have had the stem cell treatment would like to contact me and let me know if your going to be at the Italien conference in June I would be keen to know. I am considering going if at all possible and would love to chat in more depoth about your experiences please.
    Pete [ UK].

  25. James

    20 Year old boy just been told i have LS its only a small white area at my fremulim have been givin Dermovate ointment buy the sexualy health clinic and have to go back in 6 weeks for a check up! i have had this white patch for nearly 3 years now since i snapped my bango during sex and it never really healed and left a white mark and i have never really bothered with it as it as i just thought it was my frenumlim not healing properly but it was fine to use, has always been the sme size never got any bigger or smaller for what i can remember but now iv been told its LS. I just wonder if using this cream will incasre the risk of it gettin worse as even tho its there i have never really had any bother with it and my sex life is fine now at first there was some bleeding at the start years ago but now it seems healed and never bothers me so hopefully this cream will not make it worse just a bit worried as before today i didny even what LS was! Any advice would be great. Also my foreskin does not retract when errect is this unsual?

    1. werther maus

      I realize the post I’m replying to is post is ancient, but it’s essentially my story in a nutshell too. Maybe sort of “seconding” it will help someone else down the line.

      I was in high school and with my girlfriend of the time when, long story very short, we managed to tear my frenulum a bit. At the time I didn’t care (sex-crazed teenager), and because it healed up easy enough I never thought much of it. A couple years later though (maybe due to stress in college, as some have anecdotally suggested might be a trigger) I noticed it spreading a bit.

      I caught these changes very, very early on and my PCP, who had NO idea what it was and in fact was pretty dubious anything at all was wrong, sort of gave me the second degree. Turns out I made the correct diagnosis. Had it confirmed some short while later after going to a dermatologist. Was provided clobetasol, but with little guidance how to use it effectively / minimize side effects.

      I used it religiously for about a month until (go figure) the irritation that daily use caused was worse that the essentially cosmetic LS itself. After this initial treatment period it disappeared, for all practical purposes, for years. Unfortunately it continues to flare up every so often. Definitely not gone for good. Ever.

      Best advice I can give to anyone reading this is to keep on it. See a doctor. Or several. You will be doing yourself a HUGE disservice by hoping it’ll go away on its own instead of being proactive about things and keeping it at bay as best you’re able.

  26. Emily

    Thank you for creating this page, I found my way here from the Macmillan page on vulvan lichen sclerosus. My boyfriend was diagnosed with LS today, and I’m surprised at how difficult it has been to find any information on how the condition affects men and the pros and cons of the treatment involved (I also had no idea it was also called BXO). He is only 23. He’d been given a steroid cream prior to diagnosis, which has made a positive visible difference.

    There was something very concerning he had read somewhere – that the use of this cream/ointment can actually increase the risk of developing cancer. I’m very sceptical as information is so sparse, has anyone read anything like this? It only seems to be that having LS poses a slightly increased risk of cancer in women, but I can’t find information like this in men, and no risks specifically relating to cancer in any recommended treatments.

    It’s been really promising to read on other cases and how you guys have managed the condition for years, thank you for sharing, it is so helpful to others!

    1. James

      I am under the impression Balinitis Xerotica Obliterans is an outdated term, both because it isn’t as related to Balinitis (based on the swelling of the Glans) as once thought, and because of the later and on-going discovery that BXO is just male Lichen Sclerosus. Same disease, just may presents itself slightly different in character due to obvious differences in anatomy, but the damage and possible cause is the same, thought to be an Autoimmune disease which has had evidence of Antigens that attack the Collagen of the skin.

      This is why Steroid Creams and Tacrolimus work well for treating Lichen Scleorsus. They are inhibitors of the inflammation and immune response.

      Steroid Creams can’t increase your risk to Cancer, the only side effects of Steroid Creams are things like Irritation, redness, soreness and thinning of the skin if overused, but if used properly to a regime by your Doctor or Dermatologist, any side effects are doubtful.

      Lichen Sclerosus itself is said to increase your chance of Penile Cancer by 5% in both Men and Women. This is probably more likely in those who have had the disease for a long time without treatment, as i hazard a guess that it is the constant damage to the skin cells over time which is increasing your likelihood of damage to the cell DNA which will cause Cancerous mutations in the penile skin.

      Don’t be to anxious about this statistic, as 5% is not drastic, and with appropriate treatment which is working against further damage, your chances *should* be back to that of the normal population, but i am not a medical expert, so i should take the time to make the commonly used disclaimer that you should not take what i say as fact and discuss with your GP or Dermatologist / Urologist.

  27. Trojan

    Hi everyone,

    Has anyone used an Imiquimod based cream/medicine (i.e Aldara, Zyclara) to treat for lichen sclerosus?
    My doctor prescribed this to me, but after reading the side effects and not finding any reference of a similar treatment on the web, I am afraid I am being experimented on.

    Thanks a lot for any help you can give me.

    1. Post
      Author
      admin

      Hello Trojan. You do not say what sort of doctor gave you this prescription but if you are unhappy about it, the best thing to do is to either phone the doctor or make another appointment and ask for a very clear explanation of why you are being given this treatment and why the doctor feels this is a good treatment for your case. You are right in thinking this is not a standard treatment for LS.

  28. pete

    Hi Trozan and Emily, the favoured treatment for l.s. on the penis is a steroid cream, dermovate or sililar. Use it a s perscribed by your doctor and ask to see a dermatologist asap. If a foreskin is present make sure , espoecially when l.s. is in its early stages that you lubricate the skin frequently, vitamin e oil, emu oil or maybe worth trying good virgin oil. Keep arousing the area with manupilation, keep blood flowing [ as it helps remove toxins] I have done this for nearly 30 years and my foreskin is still pliable / movable. If I dont then the foreskin can tend to feal really tight, and makes me think it could tear.
    It started with me as a little white patch , and now covers most of my glans. BUT I still function, so cant be that bad. Also point out stress really does agrevate it, you can actually see it spread over a few days if your stressed.
    Regards
    Pete

  29. James

    Hi

    I was diagnosed with LS about 2.5 years ago and the problem seemed to start when I created a small tear below the glans of my penis. This was caused by a moment of passion with my wife and clearly lubrication was lacking. I then found an area on my glans that had red patches, I think the specialist at the GUM clinic described them as being like pepper spots? I used a combo of dermovate and trimovate applied sparingly but regular and this appeared to help. When I stopped using it the patches and the inflammation came back with a vengeance..ouch!

    I went back to the specialist and saw a dermatologist in a joint consultation and he showed me how the foreskin area was much more inflamed than it should be and how the skin was sticking as the foreskin was pulled back. The itching and irritation was not too bad but as soon I had sex it became inflamed again. Using a condom did help a little bit but nothing you would call a real benefit.

    I have now been advised to have a circumcision to prevent the skin from sticking even more and preventing the LS. I was advised that this would allow the area to remain more dry and the skin to thicken more. This should then prevent further tearing.

    Sadly I managed another tear two days ago, I just got my penis slightly at the wrong angle and a tiny tear appeared. It always bleeds profusely and you would think it was a nasty cut but it really isn’t that bad.

    What to do guys? Having read this excellent site it seems that circumcision may not help and could cause the LS to become worse in the scar tissue?

    I’d appreciate some advice.

    James

    1. pete

      James, it is an individuals decision, and his alone, I cant tell you either way. All I can say is read up as much as you can,Some guys say it worked for them others claim otherwise. I believe it is a known fact that l.s. often returns to any scarred [healed] tissue areas, sometimes worse than before.
      You have read my thoughts on previous posts I guess, so YOU have to make your mind up. If it was me I would want my derm to give me some REAL good reasons with PRROF of it working before it was chopped off. Not easy I know.
      Pete

    2. Josh

      Hi James,

      I’ve found that using vasaline as lubricant really helps and having sex with a condom. Obviously you have to be careful as oil based lubricants tear condoms but if you’re in a relatoniship and only using the condom to help the condition it’s fine.

      Vasaline really helped me, sex used to be very painful for me until my dermatologist told me about that trick!

  30. Agarwal

    Hello guys,
    I was suspected with this LS few months ago.I have no phimotic penis skin, but there are a lot of subtle white sopts under the prepuce. And it was continuously spreading from one part to another day by day. A little burning sensation was present in the left side of glans and sex was painful .
    The doctor prescribed me econazole tablet orally and a ointment named tacrolimus to apply on the prepuce. I used that nearly 20-25 days. It relived me from such burning sensation. But white spots never gone completely. Due to some reasons I could not make an appointment with the doctor for the next 2 months. In these days I used this ointment whenever the burning sensation comes back(once or twice in a week). There was pain on the left side of glans when the penis clams down from erection. I made an appointment with the doctor and the doctor prescribed me to take Itraconazole and new ointment which contains clotrimazole +1% hydrocortisone. I used this ointment. But it seems the ointment is not working so well. Though I do not feel burning sensation all the day but I feel it several times in a day specially when I retract my prepuce to open the glans. If I remain it close there is very negligible or no pain at all in the glans.The white spots from the prepuce started to disappear.

    But I am observing new white patchy area in my glans though the white areas are not so prominent. I am using this ointment on the glans also. I am confused whether the ointment is working or not. Or I have to move to a new ultra potent ointment. I am using this ointment for 20 days. I have used econazole+triamcolone ointment, but it gives more irritation. So stopped using.

    Anyone here faced such problem? I will be very greatfull if anyone here share your experiences with me.

  31. Kev

    Hi Argarwal,
    I am a 50 yr old man.I contracted LS approximatly 1 yr ago.I am sorry i can’t help you with your question but have to say I have just started to experience the burning sensation that you have described.I have read many of the posts that people have written in and can sympathise and undrestand what they are going through.Like others I try to stay calm as stress does seems to bring on a flare up.Everyone is different and has different ways of copeing or finding what workes best for them.The main treatment is usally a steroid cream such as Clob Dermovate plus an Epaderm cream.these forums are great for talking but remember you doctor should be able to help you best.If you feeel uncomfortable with your doctor then seek advice from a specialist at your nearest GUM clinic.
    To my knowledge LS attacks your own immune system which technically makes you partially auto immune? I could be wrong anyone got any thought s on this please write in.

    1. agarwal

      Thanks Kev for your replay. I always consult doctors before taking any medication. But it seems sometimes they do experiment without knowing you! specially in cases where the diseases are termed as rare disease. Thats why I want to share experiences with others and also want to know from others.

    2. James

      Lichen Slerosus is probably an Autoimmune disease, as more recent evidence is pointing towards Antibodies which have been found that attack the skin.

      It is not that the Immune System is being attacked, but the Immune System is the attacker. Your own Immune System is what is doing the damage to your skin and causing the white spots, redness and soreness.

      There certainly is no cure to Autoimmune Diseases, as the Immune System is vital to your own survival, so you can’t use Immunosupressants to completely suppress the Immune System, but there have been increasingly ingenious treatments for Autoimmune diseases, using creams such as Tacrolimus or certain Steroid Creams which do not decrease your Immune Systems activity overall, but only specific responses which involve inflammation and certain cells of the Immune System involved in the disease, and when applied as a cream to a specific area, the Immune System activity in that area is affected while the rest of the body isn’t.

  32. tara

    Hello I would like some advice.I have a 8 year old son who recently was seen by a urologist after passing some blood,when I got him to retract his foreskin it was inflammed and adhered to the glands,with only a pinprick urinary meatal opening.I had not examined him before as he is a very private child and did not even tell me about the blood straightaway! I am therefore not sure whether his foreskin has always been like this. When we saw the urologist he said that my son had BXO.I had never heard of it before,he recommends circumcision.I asked to try a steroid cream first,we are using betamethasone with minimal results.There is a small area of scaring near the urethral opening and his penis balloons whan he wees.I have read though that this can be normal for boys, but the urologist states it is because his opening is so small.
    I have paid privately to see a dermatologist who again has stated that he will need a circumsicion,she believes that no amount of cream will stretch the skin sufficiently to allow it to retract from the glands.She too thought it had bxo but states this will be confirmed when the skin is sent for testing.I have researched this condition on the internet and this forum is very helpful but I am in a dilema.3 DOCTORS AND 1 NURSES RECOMMEND CIRCUMSION. Any advice would be helpful,particularily from men who have had acircumsicion in childhood or later.

  33. Josh

    Hi guys,

    I’m male, 27, good health condition and eat well.

    I was diagnosed with this condition in April 2011. My case is minor but it’s progressively gotten worse but it’s still minor.

    I remember back in 2009 I had a small red mark around the urethra of my penis. I didn’t seek treatment and from my own googling got a little paranoid it was high blood sugar as I have a history of diabetes in my family and apparently that can result in red marks there. However blood tests showed that wasn’t the case.

    Anyway then about 18-24 months later another red mark occured just to the left of the first one. I still had no pain but went to the sexual health clinic. That all came back negative and I was immediately referred to the dermatologist who diagnosed me with Lichen Sclerosis.

    As time passed I started getting cuts on the inside of my foreskin after sex or masturbation. And whenever I had sex or masturbated the red marks would get a lot redder.

    He prescribed me Elecon ointment after milder steroids did’t do anything. Initially this worked great however after about a month on it I noticed I would get white spots on the glans of my penis and a white film around the red marks. I stopped the steroids and went to keeping my glans supple with baby oil. The condition caused me to separate with my then girlfriend as I just couldn’t have sex as frequently as she wanted. I did not tell her about my condition.

    The derm them prescribed me Trimovate cream which has anti-biotics in it. This worked wonders, the angry looking red marks went dull, I got fewer cuts on the inside of my foreskin. I was like this for 6 months but then the cuts started getting worse.

    Anyway went back, got on Elocon again and initially that was great for 5 days but the white marks came back so I ceased use and got back on the Trimovate. This is whath as caused me to do some research on the condition and that’s why I’ve found this post.

    My dermatologist (one of the top in the country on my condition apparently) is recommending I get a circumcision. But I am in two minds about this as the tightening of the foreskin isn’t an issue for me as I’ve always had very tight foreskin and I think it’s unrelated to the issue. When I was a kid I coudln’t even retract my foreskin back and only after months of practice as a older teenager I started to.

    The main issue for me isn’t the foreskin it’s the glans red marks. A circumcision could help this as it’ll stop urine collecting and keeping the area moist. Over the last 3 years I’ve noticed that a few drops of urine always drop out after I’ve stopped urinating which never happened before. I think this is the primary cause of the issue. So my new method of treatment will be to keep the area free from urine and see if that improves the condition.

    This is wrecking havoc on me emotionally. I used to be an extremely depressed teenager and young adult due to issues of loneliness (didn’t have sex till I was 20, only had 1 girlfriend until then).

    Finally I hit 25 and my life seemed to be progressing somewhere, good job, girlfriend etc I was happy. Then I lost the girl due to this condition. Now whenever I get flare ups I get that sadness I had when I was a teen, feelings that I will always be alone then when I do research on the condition and see there’s no real cures it really bums me out.

    Now this isn’t a particularly serious condition, I mean I had to have a biopsy for cancer and that came back negative which was a huge relief but I wish I could just have my health back again and it’s such an embarrassing condition. I’ve only told one other person I have it.

  34. pete

    Hi I think you maybe have to go with what the specialists advise here unless anyone else has experienced this. All I can say is though I have had l.s. for nearly 30 years and have managed to keep on top of it, by pulling the foreskin back and forth, massaging the region using oils, this would be somewhat more difficult for your young son. The implications for doing this are unthinkable. In older males I personally would advise not having a circumcission, but in a youngster I have no experience, nor have I read about long term effects on the penis / removed foreskin with regard to ls returning there.
    Keep investigating on the web, see what turns up.
    Pete

    1. jim gartlan

      hi pete great site for men this my story i went in with tight forskin to have a partial cicurmison in day surgery after which i was sent home told all was ok about six seven weeks later noticed lessons on my penuis went back to my gp he in turn sent me back to out patents to see a surgen the surgen who i seen was the one who carried out the surgery told me it was fine and tought it was all in my head sent home then he sent a report to my gp saying all ok but a bisopy he took showed chronic bxo which freaked me out now why he did not tell me at out ptents i dont know but on hi report was to follow up in two months which never happened so six months stil in a lot of pain lessons and discomfort my doctor sent me to a dermtolsist who imformed me i had the condtion ls for the next two years stress pain and with a lot of infections got in contact with the hosptial and was told they knew nothing about my case the guey who done the cicurmison never told his boss about the lithens the genral cnsulant said i needed to see a conuslant ursolist quick when i did see one and asked what had hppened he said ask the guey that did the first ciurmison after some words he told me i would need a full cicurmison and in march this year i had it done but the lithens had run riot after three years of neglect so still in pain no life felling stress i may add this started in o/9 ew all have our stories i guess whath i am trying to say is dont take one doctor word keep looking for as much knowledge it is a bit late for me but this disease is not a nice friend to have as was said you need to catch it early

  35. pete

    If you are in uk? and have the funds, maybe consult the stem cell treatment options available in Italy. Check the Italian forums, maybe younger lads might know?

  36. John

    My doctor recommended I have a circumcision as I’m relatively young (25) and the problem will only develop. The steroid cream seemed to help a little but the phimosis just got tight as soon as the course ran out.

    Not 100% on this one! It’s OK at the moment, if it gets any worse I could consider it, but for the time being I’m coping.

    Has anyone else here had a circumcision in their 20′s?

    John

  37. Mark

    Hi All, I was diagnosed with BXO 3 years ago, I noticed some white patches on my glans and my foreskin was becoming quite tight. I did not have much help from my doctor so went about researching natural cures for it, as I found the cortisone creams were making it worse.

    I came across terrasil max – this was a saviour for me, I applied it every morning and night and my foreskin started to loosen, and my glans started to look more normal. For a year now I have had no symptoms (touch wood), but I am left with white scarring on foreskin and glans, but everything works better as it should

    Also – I cut out dairy and gluten, and this helped a lot, BXO could be a reaction to a food intolerance, but you usually feel other symptoms too if you have an intolerance.

    Does anyone know of any treatment to remove the white scarring?

  38. Simon

    Hi there

    Hopefully I can bring a little bit of positivity here. I was diagnosed with LS in early 2008. I had previously had an operation to correct phimosis and the LS appeared in the scar tissue. It could be that the phimosis was caused by LS but I don’t think so. I was prescribed Clobetasol. I had what seemed to be a fairly severe outbreak with urethral involvement with narrowing of the urinary stream (really scary). The Clobetasol was successful in dealing with the initial acute symptoms.

    At around the same time I developed chronic diahorrea. This was a stressful period in my life for many reasons so I put this down to stress initially. With hindsight, I think this was a pretty good indication that my gut was in some way involved. This lasted, as well as intermittent bouts of LS, for the best part of 1 year. I should add that at this time I was (or so I thought) a healthy person eating a good diet and training frequently for cycle racing (a potentially unnecessary added stressor BTW). I had heard that some people had experienced a reduction in symptoms from cutting out wheat. I tried this for a while. My investigations lead me to the paleo diet (with variations thereof called primal blueprint, ancestral diet, the hunter gatherer diet). Regardless of the label, the basic premise is that you eat whole, unprocessed food. Grains are out (so is dairy under some versions) as is sugar and unnatural fats and oils (vegetable, soy, sunflower etc). I am more than happy to provide further details and links as required but there is a hell of a lot of information out there now.

    I also changed my exercise regime so that overall it was less stressful on my body – less endurance exercise, more weights and sprints which is standard primal advice. I am pleased to report that I have not had an outbreak of LS since adopting this diet in Nov 09. My chronic diahorrea (that is no solids for a year) cleared up soon after too. I am a fairly anxious and stressed individual at the best of times (sound like anyone else?) and although I still do have the odd crisis of confidence I have found that this diet has made me much more resilient mentally and less susceptible to disappearing into the abyss of worry. Spend some time reading about the diet and the problems caused by modern food and you will see that the mechanisms are quite clear for how illnesses develop in response to modern food. Wheat, especially modernised stuff, is problematic and the link between this and auto immune disorders seems to be well established. Read about those that follow an indigenous diet. They live well into old age and are not afflicted by many of the diseases we have in western society. I’d be willing to bet that the incidence of LS is non-existent.

    I find it really easy to stay on track with this diet. The prospect of further injury to my manhood is more than enough motivation.

    The steroids have caused some further issues that are not insurmountable – I just don’t ever want to have to use them again.

    Best wishes to everyone here. I hope you are all able to find some relief from this condition – however that may be.

    Simon

    1. Post
      Author
      admin

      Hello Simon. Around and about in my travels across the internet, I hear of others with LS who are using the Paleo diet. Steroids are always, always going to be a controversy for some and a total godsend for others, everyone can choose. By the way, thanks for your email regarding the time it has taken me to get your message in the public domain, I have not got round to replying yet and am making amends here. I work alone and this site attracts around 6000 visits a month – I am human and I have LS too as well as fibromyalgia! Sometimes, I do have to have a life, or even a well earned break away from LS on the internet, or I may be at a conference, or I may be unwell or attending to the needs of my family. I am not paid for anything I do, it is all voluntary and I do the best I can in any given day, week or month. I wish you well being and thank you for contributing to this ever growing resource.

  39. Scott

    Hi everyone. Firstly, it is fantastic to see so many guys actively participating in discussion about this condition. I applaud you all and thank you Pete for all the replies you post and of course Fabia for her awesomeness.

    I am a 23 year old male who was officially diagnosed 2 years ago. I had a circumcision at around age 8 because my foreskin was to tight to retract. Around the age of 17 my glans developed white patches and i went to the doctor who diagnosed it simply as loss of skin pigmentation on the glans. This area (starting on the left side of the glans) grew larger and larger over the next 3 years. It was around the age of 21 when i first saw a dermatologist who recognised it as Lichen Sclerosus. More recently within 2 years the right side of my glans has also started to scar (white patches). The very short rounds of Dermol (clobestol propinate) have settled the condition, but then it will start up again (red areas around the rim of the glans). I believe that the steroid cream ‘halts’ the spread of the red active areas but does little to prevent the spreading of the white areas (explained to me as potentially the same as the red areas but coloured white because the skin has been scarred and under a lot of damage in a short period of time that it ‘skips’ the red stage and just goes white).

    From here on in it is unknown what treatment regime i will undertake… A constant checkup with a dermatologist is critical to monitor any signs of skin cancer developing, and a strict routine of applying the steroid cream how the doctor describes is also common sense.

    I have recently started using immune modulating creams such as pimecrolimus in combination with Dermol as instructed. Had no effect so far. Check out the ‘treatment’ section from my countries dermatologist network: http://dermnetnz.org/immune/lichen-sclerosus.html

    If anyone ever wants to talk about all this, i am always willing to chat. I live a pretty normal life considering, but it would be even better to talk to someone else who has to live with this as i do.

    Cheers
    Scott.

  40. Simon

    Hi Admin

    I’m sorry – I didn’t mean to appear impatient. When I checked in on the site it seemed that my comment had just disappeared. Thank you for allowing it through. You are doing an awesome job by the way and my thanks to you for that.

    For the avoidance of doubt, steroids helped me with the initial acute phases of the disease. Things may have turned out a lot worse without them. However, I am left with areas of redness and intermittent soreness (which I think may be likened to a steroid induced Rosacea – though obviously not on the face). As a long term thing, I just don’t believe they are the best option.

    Dare I say that some people have seen some improvement with fibromyalgia by following a paleo diet – http://www.holistichealthinfo.com/treating-fibromyalgia-with-the-paleo-diet-by

    All the best and thanks again.

    Simon

    1. Post
      Author
      admin

      Thanks Simon. The Paleo diet is interesting. I am not widely read yet (I need more time!) but for a long time I have held the view, that I was a post World War II baby in the UK, being raised on ‘rations’ with limited sugar and very basic foods. I have pondered on the eventual changes that came along with better times. For example, we had toast or porridge for breakfast and then came Cornflakes and a host of other cereals, pasta, pizza, chinese foods etc, etc. I wonder how much the body reacts to such changes, over time, when it has been ‘programmed’ to certain things in childhood. I have not researched this, it is merely a thought process. So recently I started to go backwards to my childhood diet and I cannot say it has done much for the LS but other health problems have improved! I like ‘Mindfulness’ – listening to your body in the moment, being concious of what is happening and how you are feeling. I am a recovering (but still mainly) vegetarian of over 35 years and now eat fish and if I really have to, chicken but a dinosaur…..no way!
      As far as steroids go, I doubt if anyone, including many medics feel that they are the best option but until we find something better, (and this is where the politics of resaerch etc come in) they have become ‘the treatment of choice’ and in my case, they keep me comfortable 90% of the time and saved my sex life. We need new approaches, which is why everyone is in love with Dr Casabona from Italy! It is so very good to have men sharing on the site. The men get left out far too much and I really wanted to see that change. Do feel free to take part here and next time, because you have been ‘approved’ once, I think your message will come straight to the site. (Don’t hold me to that, I am still learning the web package!) Be well..

  41. Simon

    Hi admin

    Well one of the central ideas of the paleo diet is that our bodies simply haven’t had time to adapt to foods like cereal grains and wheat (especially modern wheat). The advent of agriculture was 10,000 years ago which is simply not enough time for evolution to have run its course and to allow us to eat those foods without penalty. I think that this probably holds true for everyone – even though some people apparently tolerate certain foods better than others.

    I like to practice mindfulness too as far as is possible for someone like me – some days I’m very focussed and others, well…

    I confess that I haven’t looked at the work of Dr Casabona but will do so. It sounds quite promising.

    Simon

  42. Rodolfo

    I just wanted to throw this out there. I first noticed a problem in July of 2003, I know exactly because I started having foreskin problems while on a vacation where I dislocated my shoulder. It was very hard to deal with both as I was without the use of my dominant hand. I started to have problems pulling the foreskin back and I noticed a white ring around the tip of the foreskin, all the basic symptoms of OBX. So I get some betamethasone cream and deal with it for 8 years. Not sure how it works with others, but my condition came in waves. Some weeks I was okay and had no problems, others it was hell even trying to go pee after having sex due to all the tearing. So one day I notice that I was having trouble getting erections and my sex drive was almost non existant (odd because I was only 37 at the time). I went to my new doctor and she told me to stop taking these Phentermine pills that she had prescribed to lose weight (i lost 60 pounds!). Apparently one of the rare side effects is loss of libido. She then gives me a 6 month prescription of Cialis One Day 5mg to help me while my body rids itself of the Phentermine….I HAVE NOT HAD A SINGLE EPISODE OF OBX SINCE! I’ve had to deal with a little tearing during rough sex but that was mainly from all the scarring that had occurred with OBX. I’m not saying that this is a cure, but it worked for me and my insurance actually cover the Cailis (still $100 a month). I figure what can it hurt to let other know about this. Has anyone ever been on Cialis with this condition? Results?

  43. Rodolfo

    Also wanted to point out that I stopped taking the pills for a month and the OBX returned, my Doctor just gave me another 6 month prescription and acted like it was nothing that the Cialis was basically treating the OBX!

  44. Michael

    I’ve just been diagnosed with LS and am searching for information.

    I had a white ring start to develop around the top of my foreskin and felt my foreskin tightening. Now i cant retract at all but feel no discomfort or itching at all. I’m at a loss whilst i didnt get it looked at earlier.

    I’ve been prescribed a steroid cream and have been applying it for a week with no apparent difference.

    The doctor who diagnosed me said to try the cream and if it doesn’t improve in six weeks that i should think about a circumcision. Is that the way to go, will it solve the problem?

    1. Matt

      Michael – I had exactly your symptoms and the various creams didn’t work particularly well. The foreskin was tightening up in a ring and was making erection uncomfortable. In the end I opted for circumcision and haven’t regretted it. I was 33 at the time and I’m 43 now. Its been 10 years since I even considered this condition – I only ended up here because I was trying to remember the name of it. Although it seems a big step I found it to be pain free, not much change in sexual function, and more hygenic too. None of my sexual partners has ever said a word about it either.

      Good luck.

  45. pete

    Rodolfo, interesting that ciallis seems to help it. Reading up. I believe this drug works in a similar way to viagra, increasing the blood flow to the penis. I assume it has this effect on you?
    If this is the case then I imagine it is the increase in blood flow and possibly [ maybe some massage] the stimulation will then help with removal of toxins. See my other posts. Talking to others, especially some of the ladies who are more out spoken than us guys, they confirm massage /stimulation really does help.
    Could this be the case with yourself?
    I also consider the other possibility that some of the chemicals in the drug may have an effect, but not being a chemist not really sure.
    Pete

  46. garyb

    hello all had LS since around mid Jan finally told it was after seeing a derm DR recently i have a bad constriction and a circ has been surgested. im not too keen on this but sex life is zero because of the condition . i was wondering about the oil you use pete ( emu) i take it this has to be %100 pure ?

    male 52 in the UK

  47. pete

    Hi I use triple distilled emu oil, holland and barret vit e oil , both for massage, then E 400 vitamin e capsules and triple omega 3 6 9 capsules both internally.
    Hope this helps
    Pete

  48. Danny N

    Hi,I am a 57 year old Male and i have suffered with this condition for abought 8 years the thing that i think is unique abought me is i was circumcised as an infant and i have not seen any post by uncircusized males I was given a tub of something called triamcinolone 0.1% ointment and was told to apply it twice a day for 2-4 weeks and it did nothing,I intend to keep up with the postings untill i find a cure or get to old to care!

  49. Ben

    I am a 31 y/o male who was diagnosed about a year ago with BXO via visual inspection. I had a tight white ring and not much else in the way of symptoms. I started focussing on keeping the area as dry as possible, and not a lot else. After a bit my corpus cavernosum split and has become primarily scar tissue but the whiteness has subsided and my foreskin is no longer phimotic. My urologist, who originally recommended circumcision, changed her mind with further inspection. However, aside from maintaining a dry environment I have no treatment regime. I was wondering if anyone had any advice in what I should do. I recently started experiencing a burning sensation partway into the urethra, which my doc feels is not BXO because there has been a halt in external tissue damage. I suffer greatly with anxiety, I saw that someone said they found a link there, can anyone back that up?

    1. Post
      Author
      admin

      Hello Ben. Thank you for sharing here. I think I mentioned in a previous email that during my work with this disease since 1997, I have noticed that even men who have had surgery do benefit from steroid treatment before and after surgery and on an ongoing basis and all the major research published articles recommend treating the LS with the now recognised treatment of choice (ultra-potent steroids). In a well managed case of LS in men, women and children, the steroids can take back the actual disease (under the skin) as well as help symptoms. Also whatever doctor anyone sees, it is important that the doctor knows enough about skin disease and skin treatment regimes to suggest management and maintenance treatment. Doctor and patient education is important. It is as important to educate patients about the onslaught of anecdotal beliefs that are out there and are confusing patients. All that is needed is a good doctor who treats your case of LS according to your own needs and for everyone to look at their belief systems because many people allow their beliefs to prevent them from treatment that could offer them comfort and a good quality of life. However, we all know how difficult it is to find doctors who are truly dedicated to helping patients with LS but I assure everyone, they are out there. Our friend here, who writes a lot for us, Pete, is right about regular moisturising and massage as these can form a front line defence for LS, together with steroid treatment for flares and relapses. Ben, as far as anxiety goes, this is not a definite ‘link’ there is no definite medically researched information on what causes LS. Over the years I have watched the internet be responsible for any amount of myths about LS and what it does and does not do and what is a link and what is not. The truth is that all these things stem from other people’s beliefs. If anyone suspects that anxiety is worsening either the symptoms or the condition itself, the very best way forward is not from surgery or creams or oils, it is through a form of treatment that will relieve the anxiety. Anxiety is definitely a big worry for everyone with LS (including me!) but its not helpful to hold on to it and not deal with it as you would any other health problem. In fact, anyone who is seeing a very caring doctor who has managed to get their symptoms under control and thereby restore their quality of life, will find a huge reduction in anxiety. You see Ben this is a very big subject and LS is extremely complex. It is my own beleif that people with LS will need to see a multi-disciplinary team of doctors over their lifetime of living with LS, sticking to either a gynae, or a urologist all the time often brings many problems because neither of these medical disciplines are trained in dermaotlogy and so my dream is that everyone gets the services of a dermatologist who had an interest and expertise in LS. In the UK, we are beginning to make a break through with this idea but it has a long way to go. I do hope that something I have written here has been helpful. Always feel free to mail me off site if you feel I can help in any way.

  50. pete

    Hi all , I thought I had posted this but maybe didnt make it. So i will post it again for newcomers who might be interested.I have had pc problems again so maybe it didnt get through. I believe it is ones own attitude towards l.s.Hi all, I will post how I deal with l.s. again for any newcomers. I have had l.s. for nearly 30 years. At first my old country style doctor thought it was thrush and had appropriate treatment for thrush, 5 years on a young doctor thought it could be l.s. I had no problems with foreskin, just white patches on glans. So off for derm appointment and then off for biopsy. I was sh-t scarred, Lay on a bed in a 2 ward theatre, curtain open and willy exposed to next patient and 6 nurses at least. Think times have changed since the mid 80`s. Didnt feal a thing, got up and went to pub with my brother for a drink. LARGE rum. then decided to go to toilet and view dammage. Waasnt that bad. Drove home. Going through divorce at time, 3 kids , youngest 18 months, ex had played away with best my best mate. LOADS OF STRESS. SO SETTLED DOWN , SORTED MY LIFE OUT AS BEST AS i COULD, LOADS MORE STRESS. Then I settled down to massaging into my glans and foreskin initially vitamin e oil the latter emu oil. Twice a day when I can. This involves increasing the blood flow to the region. It is the same with ladies by increasing the bllod flow you are removing some of the toxins from the region.[ basic massage techniques...I am a qualified masseur]. I also take vitamin e oil , and triple omega 369 [1200mg] tablets daily. along with 100 mg vitamin c, vitamin b complex vitamin d tablets. All I can say is it doesnt go away, the white patches remain and indeed slowly spread. Stupidly the derm expert I met last week thought it had gone into remission, even though I explained the white patches are still slowly spreading, He knew less than I did on l.s.. But then I have it as part of my life, I wasnt justy another face coming through the door. I have to live with it.
    So guys and any gals reading, you can keep on top of it, you can if your lucky still have a sex life, Being POSITIVE really is the best way of fighting it. Take control, be positive,
    Always here for questions, and many other sites. Like the Admin, [worldwide l.s.site]she and I have been around for a long time, fortunately because guys dont talk we are not so far advanced in recognition of male l.s. within the medical world as females. Females talk more , are more open, and some fight like stink for help and support.
    Thats what we need to do, some of you newcomers, start shouting to your gp`s , and dermatologists more [in a nice way] . Remember collectively a battle can be won moire easily than an individual on their own. The last 30 years have been a tough battle. and we get worn down, support and backup is needed to continue the fight.
    Sorry If I have gone on a bit, but I hope it helps. and life which makes positiveness such a valuable thing to possess. Anyway , read on.

  51. AJ

    Hi

    Im male 28 and have suffered for just over 1yr and a half. Ive been on here a couple of times looking for new treatments for what works best, i have been using steroid creams from doctors but they only ever dealt with the problem while i used them and minute i stopped it came back with vengeance!
    So for passed month i used retinoid anti wrinkle cream which made the head of my penis peel and look raw but i had nice new skin underneath and thought i was getting somewhere but it started to look alot worse than before it covers about half the head of penis, anyway i am also using bee pollen supplements everyday and have just started taking MSM supplements for the last 5 or 6 days on top of a little steroid cream just to calm the inflammation as it had been the worst its been in a while but the strange thing is since taking the MSM my condition is all but disappeared all that remains is on little red patch and when i say little i mean about 2ml patch where as before it covered the whole underside of the penis head and a little more.

    The skin on my penis actualy looks completely normal no with patches no thick skin no inflammation just this little red 2ml dot which i hope disapears in next couple of days i honestly cant remember last time i seen my penis look normal!

    The other thing is i always had flare ups no matter what i did whether it be sex or rubbing on my clothes but no reaction what so ever since taking msm but i dont want to get a head of my self here fingers crossed my progress continues i see light :) not sure if its the combination of bee pollen and msm or just the msm that is making the difference im keeping my fingers crossed after feeling so low about it i feel reasonably good today

  52. Simon Middleton

    I would be surprised if there was a direct causal link between anxiety and the development of LS. I suspect that those that are most anxious about the disease are more likely to talk about it on internet forums – there is likely an unseen majority who do not share the same anxiety.

    That said, and with reference to my earlier posting, I think that lifestyle (specifically the lifestyle we enjoy in the West) is responsible for many diseases (diseases of affluence) and that LS is amongst them as is anxiety and depression. In other words, the underlying cause is the same.

    My own somewhat depressing feeling is that there will never be a true pharmaceutical cure for LS and neither will there be for cancer, diabetes, depression or any other disease of affluence. Compare the numbers of people with these illnesses today compared to even 20 years ago. For that matter, is there a true pharmaceutical cure for anything? There is more money to be made from ill people than from well people. The only way to fight these illnesses is by addressing the root cause and, more often than not, it is down to the person suffering with the illness to do so.

    I remain convinced through my own experience (and that of others who have made similar lifestyle changes) that the best thing you can do for your health is to get educated about food and how it is metabolised in the body and to eat accordingly. For my own part, I believe that a diet comprised only of wholefoods, with an emphasis on meat, fish and fat and which excludes sugar, vegetable oils and gluten containing grains will vastly improve the health of any individual. If you don’t believe me, try it for a month (perhaps supplement with a good quality fish oil) and see how you feel. That is what I did, and I haven’t suffered a bout of LS since (3 years). I should add that my anxiety/mood is much improved as well as many other positive health improvements.

    There is nothing magic about this (like other diets claim) it is simply eating “species specific” food – when animals are fed the wrong stuff they get ill. Humans are no different. I hope someone can make use of this information. All the best.

    Simon

  53. pete

    Hi what is MSM? and bee pollen, where do you get that from. How about letting a bee sting the end? I do not jest, a friend of mine kept bees and he had lotes of problems cured with bee stings, he reckoned…..what a thought all thoise men staning outside waiting for a bee….ha ha you gotta laugh…[ its a good form of medicine also].
    Alsdo I agree with Simon after 30 yrs of l.s. my own regime [ you can read on here elsewhere] plus good good wholesome food, brown rice, wholemeal pasta, fresh veg, no processed food, vitamin e oils and triple omega 3 oils taken internally has Im sure kept me going.
    Plus a good sense of humour……
    Pete

  54. pete

    OH and yes I agree we have no official link between ls and anxiety BUT I believe I have actually seen over days the spread of the white patches when I have been anxious, eg, divorce [twice] Lossing my 3 kids, etc etc. Once you have hit the bottom, and I have been there, [ suicide at one point]. The only way is up and regardless of circumstances, health, poorness, [ no money, no job] ill health, aches and pains and I have experienced them all, there is the other side….happiness. AND we create our own happiness, no one gives us that….it is a state of mind.
    Funny one thing old age gives us, a wealth of experience to do with what we want.
    Pete

  55. Simon

    Hi Pete – yes, I have observed the same phenomenon. A possible mechanism could be that on a background of already chronic inflammation (caused by poor diet, poor exercise choice, lack of sleep etc, etc) anxiety more readily occurs in response to external stressors. In turn cortisol (known in the popular press as the “stress hormone”) levels are raised. Cortisol is known to have a pro-inflammatory effect and, if inflammation levels are already high, further flare ups of LS are much more likely. Flare ups of LS in turn are (in my case at least) chronically anxiety causing and thus a sort of feedback loop develops which it is very hard to break out of.

    Now if we are able to minimise our levels of systemic inflammation by eating well, sleeping well and generally living a good life we will be more resilient and lifetime stress will have a less detrimental effect on our health. I have found this to be so in my case. Since adopting a paleo type diet (I’m not particularly keen on the name as it sounds faddy) there has been a whole lot of stress and change in my life (family death, family illness, new child, miscarriage – all normal but stressful stuff) but I have felt mentally much stronger than I would have done in days gone past and there has been no recurrence of LS.

    In other words, the underlying cause of anxiety/stress is possibly the same as LS but one does not necessarily cause the other. Deal with the underlying problem first!!

    Simon

  56. AJ

    Hi

    Here is a link to explain Msm

    http://falconblanco.com/health/msm/msmq&a.htm

    Also if you google it you will find more info on it, its alot to take in but its done wonders so far for me you’ll see the conditions that have been improved with msm. I take 1500mg a day just 1 capsual im so glad i started taking just hope it continues no flare ups as of yet

    Also bee pollen supplement has every nutrient the human body needs to survive i just add a tablespoon to a smoothie in the morning being doing it for 2 months now but only started taking msm just over a week ago and ive seen great difference as one of the biggest benefits of taking is it acts as an anti-inflametry and also gets rid of toxins from yor body much quicker

    Bee pollen

    http://www.buzzle.com/articles/bee-pollen-nutrition-facts.html

    Thanks

  57. Chris

    In the last few months I’ve recently developed the white ring around my foreskin, have experienced tearing of the frenelum, tightening of the hood, and some pain during urination. I’ve applied dermo creams which has helped moisten the affected area, but these seem to mask the real problem, which I initially believed was from my frequent binges into alcohol. I assumed that my erection problems were down to the kidneys and liver not coping with my lifestyle. This is probably true and I’ve cut back on my intake.

    However, I’ve also experienced the loss of the enamel from one of my bottom right molars, and more recently a small chip from the bottom incisor. After the first enamel collapse the Dentist reassured me that this was due to food caught in between the teeth, and the remainder of my teeth were fine. I couldn’t help think that after the second enamel loss that there was a link between this and the Lichen Sclerosis.

    Low and behold two weeks ago I developed a symetrical circle of dry skin on my right wrist. Very odd, and it didn’t itch. I wondered too if this was also connected. After reading the threads left on this website I became more intrigued, enlightened, and relieved I was not the only sufferer, but knew there was much more to this than creams and circumcision.

    When I googled my wrist rash I found that this is an indication of a dermological skin condition related to the small intestine not being able to digest the nutrients the body needs. Further reading provided me with evidence that there is a possibility that I might have a celiac disease which is the result from gluten foods: bread, pasta, beer, ale! Unfortunately the gluten binds in the intestines, and small hairs that collect the nutrients are damaged, which can then lead to a whole host of body functions and problems. Reading the symptoms of celiac sufferers it mentioned that enamel defects in the teeth are possible, and that of dermo skin rashes (more commonly found on elbows and knees).

    Tonight I typed in Celiac and BXO to see if there was a link. Sure enough there has been an Italian study (will have to post link) that lists a whole host of problems and symptoms for celiac and dermo sufferers, and Lichen Sclerosis was mentioned. My conclusion is that I need to change my diet, stop eating gluten products (I love sandwiches and ale), and see what course that takes. I have a Doctors appointment next week so I hope to have a good one to one and see what they have to say. Luckily wine is free from gluten, but I think I will look after my kidneys and liver and limit my intake from now on.

  58. luke

    Hi All

    I am 20 years old and for months I have had itching, whitening, tightning and spliting of the foreskin, this was mistaken for thrush at many differnt uk GUM clinics eventually it was diagnosed as LS!

    The cream i was given was affective and i stopped using it, when symptoms started to reapear i used it again but only for a very short while. a few weeks after i started to notice what looks like the start of warts!

    A couple of days ago i went to the gum clinic again and they confimed this and said it is a rare side effect of the cream but where unhappy to freeze the warts because my LS has flared up again!

    The advise i was given was to then continue using the cream i was given (trimovate) untill symptoms died down, then to use Warticon for 3 days on followed by 4 days of trimovate and continue this!

    he also said that It was going to be a struggle for a few years!! because the two creams are trying to do opposite things i.e counteracting each other!

    has anyone been through anything similar or got any advice?

    Thanks

    1. Post
      Author
      admin

      In 15 years of running this site, I have only heard of one other person with this problem, so your doctor is correct in saying its a rare side effect.

  59. AJ

    I had only applied steroid cream 2 days before i started msm and i am currently using the steroid cream just for a short time until i test it alone with msm! I have honestly never seen my condition this good before even after my first 8 weeks of steroid cream about a year ago it has always left me with red patches that got irritated easily flare ups all the time!
    I have just noticed today that the the skin that was infected has now returned to normal but has ever so slighlty tougher skin than the rest it looks as though what ever was causing the condition has now just vanished with in the space of a week to 10 days of msm and a little steroid cream!

    You can actualy buy msm cream aswell as oral intake but i havent bothered! Im honestly amazed i felt like shit about the state of my condition 2 weeks ago i believe im cured a little steroid cream to help the surface of skin and then some msm to deal with my immune system so it doesnt come back, i now have full blown sex life with not one problem never thought it would happen i continuously check it because i cant believe its happened :)

  60. Simon

    Chris – I believe you are correct to suspect a link between damage to your teeth and LS. Teeth generally are a good barometer of general health. Look up the studies of Weston A Price (or the WAP Foundaton). He was a dentist who set out (in the 1930′s) to establish the reasons why Americans had such poor dental health compared to indigenous populations that had not been exposed to the western diet. He had the unique opportunity to study many such populations from around the globe and he found very low incidence of dental caries. Not only that, these populations did not suffer with many of the maladies we accept as normal in the West – no cancer, obesity, diabetes, depression, crime – the list goes on. However, the first generation of these populations to be exposed to Westernised foods suffered with very poor health. I find it surprising that his book “Nutrition and Physical Degeneration” is not required reading for dentistry students.

    Celiac disease has a strong link with autoimmune disorders. Avoidance of gluten is mandatory for those with celiac disease but I would strongly recommend also following a “paleolithic diet” for optimum health. In my own case, I had a fairly strong clue that my LS was in some way related to my diet as I started with chronic diahorrea about a week after LS was diagnosed. Both continued unabated until I adopted a paleo diet approximately 12 months later. I tested negative for celiac but I believe now that it is possible to have a sub-clinical manifestation – a kind of “pre-celiac” if you will. I would be prepared to bet that almost anyone with LS or other autoimmune illness has the same thing.

    At the risk of ranting, it is not special to be allergic to gluten – as a species we simply aren’t adapted to it at this stage in our evolution.

    All the best.

    Simon

  61. Simon

    I should add that my dentition is also (somewhat unbelievably) much improved since eating this way. There has been a re-mineralisation of enamel on previously seriously worn teeth. Dr Price identified this phenomenon with Eskimos who had really badly worn teeth from chewing leather but no areas of exposed dentine. I believe that most dentists do not think this is possible – maybe because they have never observed it in practice.

  62. James

    Hello my name is James,

    I’m 23 and have recently been diagnosed with LS. I was given clobetasol propionate cream which, for the first few weeks worked incredibly well. My foreskin loosened and colour came back to the head of my penis nicely. Over the past few days I have noticed major deterioration. My foreskin has tightened again and my skin has become flakey. I also have a lot of pain with my frenulum. It seems to of shortened a lot and has began to tear. I wash regularly but have alose noticed a change in smell. Is there such thing as using the cream for too long or applying too much?

    James

  63. Glyn

    My Name is Glyn and i’m 38 and have been diagnosed with BXO. now i’m scared is the 1st thing i am asking does being overweight have any effects for this and or would losing weight help this condition.

  64. glyn

    My Name is Glyn
    I have been diagnosed with LS . I am scared just reading about it and guess the internet can make u worry more than maybe you should, I am under a urologist at the hospital, now i am wondering Does being overweight in anyway affect the LS, and if it does would weightloss help it . I am 38yrs old and dont feel like a man as there is no sex between myself and my wife due to the pain im in. thx

  65. leigh

    Hi there, I was diagnosed with LS about 10 years ago. It seemed to appear after some odds goings on with scarring and infection on the membrane of my penis. I get red blotches only, which spread around the membrane only. I use TRIMOVATE which seems to work brilliantly- If I do not use it for, say, four days the blotching will come and spread quite quickly. I feel thankful that i dont have it on my foreskin like some of you guys but I still worry about cancer. I try to keep on top of it as much as possible but of course my sex life can get in the way. I find semen really irriates the condition so have to make sure I shower and reapply after sex, (rather than falling asleep straight away!) I also have splittign aroudn teh anus and peramium- this is much more painful – I’m not actually sure if this is LS- does anyone else have it? I literally split along a line towards the anus and it takes longer to heal than the LS on my penis.

  66. BRIAN

    Hello, i have been reading all the posts on here today, and i was diagnosed with L.S. two years ago,but i dont have too many problems with my penis,just red blotches,and my foreskin can still be pulled back pain free. But, the location of the problems i have are the anal area,and right round to the groin and the top of both legs! And today at the Dermatology Clinic i got the result of my patch test, and told i have an allergy to METHYLCHLORO ISOTHIAZOLINONE + methyl isothiazolinones, which is present in many cosmetics,soaps, detergents,shampoos,glues and other products. Is there anyone else who can relate to my symptoms? I would welcome any feedback. Thank You!

  67. Sean Hayes

    Hi everyone,

    I am new to this site. I am a 28 year old male living in the UK. I was recently diagnosed with LS. The problem originally started when I had a tear in the frenulum, sex was painful. After a while I found the frenulum healed but the foreskin became tight and pinched, causing a white ring all the way around. I could and can still pull back the foreskin but it’s very tight and sex is fine but I do need lubricant. I was given steroid cream for the frenulum tear but I only ever applied it to the frenulum for about 2 weeks, I never applied it to the actual white patch because this wasn’t my cause of complaint at the time and I’m now wondering if I have been applying it wrong. I have been told by a Urologist that I need a circumcision and the operation is 3 weeks away but I really don’t want it done but feel I have no choices (I am not rich enough to travel to Italy to explore this stem cell treatment). I am worried about sex after circumcision and complications from the op. Any advice would be amazing.

    1. Post
      Author
      admin

      Really sorry to hear that you are in a dilemma about circumcision. It is a very difficult choice to make. One of the biggest problems seems to be that doctors are not able to explain fully enough, the benefits of taking this option. For example, does your doctor tell you why you NEED the circumcision. Doctors often advise patients in accordance with their beliefs, as well as any training they may have had. Your doctor may believe that this is the best course of action in the long term but he/she needs to tell you why. Mr Christopher Bunker, a leading dermatologist in male LS, told me that circumcision, improves sexual function and reduces the risk of penile cancer. Mr Bunker is very much in favour of circumcision in men. There have been men in the group who have managed to alleviate that tight ring of skin with potent steroid ointments and lots of massage – this can take many months of treatment. The medical profession advise WLSS, that the white areas of skin need to be treated as well because that is active LS. From a doctor’s point of view, circumcision will certainly help and possibly cure the tight skin issue, but the other symptoms of lichen sclerosus, itching, may return. If you need more time to think this through, then tell your Urologist that you need more time and if the stricture of the foreskin is not endangering either your penis or your life, it may be that you can take a little more time to think things through or even ask your Urologist for more information. Sadly, too many of us would like to try the treatment in Italy and do not have the financial ability. I notice you only used your steroid treatment for two weeks, often it takes longer to get things under control. It is really important that everyone follows their treatment regime through and that the doctor in charge of your care does give you sufficient information about using the treatment and the consequences of not using enough and follow up after an first consultation is essential with LS. Education is very badly needed for patients and for doctors who are not trained as rigorously in dermatology as a dermatologist. The other big problem is that men who have been circumcised hardly ever comment here, except one man, to say how successful circumcision was for them and how much better they are. Websites like this, tend to attract people who have had difficult experiences. I really wish the men would be more generous in sharing good outcomes (and the women too!) patients who visit this site are often seeking hopeful, positive outcomes. I do hope you will come back and let us know how you get on and good luck with making your choice.

      1. Sean Hayes

        To Admin,

        Thank you very much for your quick response.

        My Urologist is also a surgeon and he will be the same person performing the operation. This might be a stupid concern because he obviously knows what he’s talking about but the hospital website doesn’t actually state he is a doctor, it says ‘Mr’ and he is a consultant urologist, his profile does state he completed the FRCS in 1993 as well as many other things but no where does it state he is a doctor lol. It was a part private/part NHS hospital so I’m not too worried.

        The doctor I originally saw told me to only use the steriod cream for 2 weeks and apply once a day! The Urologist diagnosed my condition within seconds and did not force me into circumcision but he did explain that it was probably the best option because there was no guarantee the problem would go away if I went for a frenuloplasty. I must point out that I do not have any itching at all but the internal foreskin is very white and foreskin is tight which until a few months ago it never used to be.

        If I do decide to go through with it I will happily visit this website to provide a regular update.

        1. Post
          Author
          admin

          Hi Sean. When a doctor becomes a consultant, he is known by the title ‘Mr’ rather than ‘Dr’. It is a way of showing that he is a senior medical person, so that is why. It is a polite and honorary title that denotes his standing within the medical profession. I am really pleased to hear that everything was fully explained to you. LS is a very complex skin condition and while all the main information states that LS itches, there are a number of people who never, ever have itching but do have white skin. The white skin is more of a problem in women because, women do not see our genitals every day in the same way a man does, so women who do not have itching and never look, often end up with quite severe LS. Whatever choice you make about surgery, I do sincerely hope all will go well for you and will be very grateful to hear your feedback. Take care.

        2. Roger

          Hi Sean.

          I just found this site as I am suffering at the moment and am looking for the latest advice on breakthroughs in BXO (Balanitis Xerotica Obliterans).

          I suffered a torn frenulum as a teen and this lead to a condition called paraphimosis where the skin became so tight under the glans that it is unbearable. It was like a 1cm band of scarring all around the penis.

          Circumcision, at the time, was given as the only option for me.

          It was probably the best thing I ever did so I wouldn’t overly concerned with losing a little of yourself. The first time you have sex (around 1 month after the operation) will be the quickest sex you’ve ever had but the hyper-sensitivity goes away quickly and you will lead a healthy sex life.

          At some point, the consultant (which as admin have said correctly already are referred to as ‘Mr’) then said he thought it was BXO and the BXO was a term to describe male LS as LS was generally only used in female incidences. I do not know how correct this is and would appreciate clarification on this point.

          Unfortunately, my BXO gradually got worse until this lead to urethral strictures and discharge every morning which was diagnosed as commensural bacteria. It looked like yellow puss. I think this was because urine was lying stagnant overnight behind a stricture.

          Around 2006 (then aged 37) my strictures became so bad that I ended up having a urethrotomy to cut the strictures out. I am not sure if this was managed correctly from the NHS perspective as I ended up opting for a urethaplasty where they cut me open from top to bottom and cut out the bucosal tissue from the inside of my cheeks and stitched it into my penis.

          To this day, I am still open as the BXO really attacked my penile skin and scrotal sac and they are unable to stitch me back together until the BXO has settled.

          I am hoping someone can give me some advice on this site also as the condition is really getting me down.

          I used topical steroids such as clobetasol, eumovate, etc but the skin which has been attacked is now pure white for about 1 – 2 cm on each side of the surgical cut where the urethral replacement took place.

          The skin tears very easily and I have not been able to have penetrative sex for over 4 years now. Very depressing for a man – pretty damned depressing for my girlfriend too.

          1. Post
            Author
            admin

            Roger – this sounds very challenging to live with. I am not sure if I have anything to offer here but what comes to mind is maybe a second opinion with a female dermatologist and perhaps someone who can think outside the box. I understand that this sounds daunting. 4 years is a long time and this is a huge quality of life issue. If it would be helpful to talk to me one to one, do mail me. I know that on the internet BXO is a term that is still used but this term was abandoned many years ago in favour of just lichen sclerosus. Lichen sclerosus is the description now in men, women and children. Unfortunately many of the doctors who have been in practice for a number of years do not always accept new terminolgy but the terminology changed in 1995!! I am aware, that in female LS, there are more things on offer than eumovate and clobetasol but you do not seem to have been offered anything else. I guess my best shot here is for a second opinion. Please let us know if you are able to find help that will move you forward.

  68. pete

    sorry for being away for a while. I have the notorious white patches and yes they do spread. I keep my foreskin moiste and lubricate it daily and massage making sure the foreskin is moved whilst massaging. I keep it very moiste most of the day with oils, cheers
    Pete

  69. John

    Hello everybody…..Interesting to read about all guys who have been diagnosed with LS. I have the problem, that I don’t know whether I really have LS or something else.

    I’m 47 years old. Unlike most other men who get LS I got circumsized as a child. About three months ago I started to develop an infection on my glans. it was a red, wettening spot…looked scaring. My GP referred me to a dermatologist. As initial treatment with steroid cream didn’t help he recommended a biopsy to make sure it’s nothing malignant. The histological results showed a “partly lichenoid, partly spongiotic inflammatory reaction”.

    Neither my dermatologist nor my GP could translate that into a diagnosis. When I insisted and asked whether it might be LS or an other lichenlike disease, I got no clear answer, which was quite confusing My sister, who also is a doctor, said, that the histologic findings are very unspecific indicating a numeruous possible diagnosis.

    After continuing treatment with highly potent steroid creams the inflammatory process stopped. But I still have a reddish, discouloured area with a white spot in the middle on my glans. The dermatologist said, it would probably return to normal after a certain time as discoulorations after inflammations are common.

    I’m actually kind of worried about the whole thing, left without clear diagnosis and with symptoms which don’t subside and indicate it really could be LS which might flare up again.

    Anyody here who could help me?

    Thanks

    PS: I’m living abroad. My english is far from perfect…..

  70. Roger

    I might add that you are at a good position although it might not feel like it.

    In summary of the good points above, circumcision was a very positive experience for me. What followed obviously hasn’t been.

    Answers and understanding of LS and BXO were thin on the ground. This may be something to do with the fact that men are too embarrassed to get it treated. I was once told that BXO affected 1 in 1000 men. Since then, you find varying reports on how much of the population it affects.

    They are not sure of the cause either but I was advised that it is an auto-immune deficiency and a very special one at that as it only tends to attack the genitalia.

    I think this week’s news on the Encode Human Genome project is exciting and one day there will be an answer to why your body starts attacking itself in one particular region.

    I wish you all the best in your decision about the circumcision. No-one can really advise you on this.

    It sounds as though you are suffering from phimosis. If this becomes worsened through additional tearing and turns into paraphimosis. You will notice the difference for the worse.

    At least if you discuss this again with your consultant you can ask for his opinion as to whether it is phimosis and take a view again on whether to proceed. He will have formed his judgement, or at least should have, on what was presented to him.

    I think this site is an excellent resource and I look forward to scouring it for additional information and opinion on my own condition.

    I see Scott asked above whether there are any circumcised men with LS on their glans.

    I cannot recall if the LS (BXO) was there before they performed my circumcision but I am hoping for an appointment with my consultant in the very near future and I shall ask him if my records show this as I simply cannot recall.

  71. Sean

    Hi again,

    Sorry it’s been a few weeks, it took me a while to find this forum again.

    Well my op is tomorrow morning and I must say I feel very anxious about the whole thing but I am going to stick with it. I also think that the LS is attacking my frenulum now as it is getting a bit uncomfortable when I pull the skin back so I definitely do not have any 2nd thoughts.

    I will try and keep a blog, perhaps photos too (if anyone is interested).

    Sean

  72. Sean

    Hi it’s Sean again.

    I’ve had the op now! I have written a mini-blog on my phone and taken photos every now and then but I am yet to find somewhere to publish it.

    Anyways, I thought I would just quickly confirm that the operation went very well. It’s been nearly 2 weeks now and it’s healing very nicely with only a couple of stitches left in. Unbelievably I have not been in any pain and have not taken any of the painkillers provided! I was back to work (office job) within 6 days but easily could have returned a couple of days earlier. I’m yet to do anything sexual again but I am very eager to, just need the last stitches to drop out really.

    I will be happy to answer any questions as I have only given a brief update.

    1. Post
      Author
  73. Chris

    Hi folks,

    I have had LS for about 6 years now (37 years old). Going thru a flare up now, which prompted me to do a quick search for new information.

    My LS presented itself when I had a tightening stream of urine, and one day, a complete stricture that closed it up. Not a pleasant experience. I have had several surgeries, which I refer to as “pipe cleanings”. My last surgery was ~2.5 years ago.

    Minimal flare ups – I don’t have an issue with retraction of the foreskin, have had once or twice a slight tear on the side during “rough sex” with wife.

    A couple of things I have tried and have found over the years:

    In my experience, a definite linkage with gluten (I don’t drink beer every night, but if I drink more than a few over a week, I can feel it down there….) also, breads – eating a lot of bread kills me! So, I simply avoid as much as possible – having just the occasional beer, but sticking to wine now.

    Two treatments I have tried upon recommendation of my doctor – Dr Leonard Zinman, based in Boston (someone mentioned they were trying to keep list of experts – he has done a lot of research on this topic)

    1. Vitamin d3 – take large doses a few time a week (5000iu-10000iu) ~3x/week – this has seemed to work, and part of my flare up is that I have gone awry of doing this…
    2. This seemed the weirdest – but honestly, I noticed a huge improvement on the “look”, reducing the whiteness – soaking my penis in warm salty water for about 5 minutes everyday

    These two worked for, sure its sounds hokey though…

    One other item he had researched was low testosterone – when I went to the Endocrinologist, he tested me, and in fact I was quite low on testosterone (which my wife could hardly believe since I was chasing her around the house every night – never would have thought). So he issued me testrim cream to apply once a day. A definite connection, but not in a good way – it immediately cause my strictures to return, very painful – he said that was the first time he had heard that, but there was definitive link to the Testosterone and the LS.

    Lastly, one thing I have to do is my own preventative pipe cleanings – using a catheter and some clobetosal, I do my own clearing – right now, I am doing it every day due to the flare up – but usually, I have to do it 2x a month.

    Thats my experience – trying to avoid a urethral reconstruction – ….. so far so good.

    Cheers

  74. Jacob

    I am a man 28 years old and i was diagnosed with LSA before 7 months.

    I had symptoms only at the foreskin and my doctor gave me a cream (maybe clobatazol or something) for 10 days.

    Everything was ok after that. He also tell me to use testosterone cream once per day for ever. Things goes better from then but i still have some minor tears at my foreskin when i have sex.

    I also use moistirize cream 2-3 times per day beacuse if i dont i suffer from dry foreskin which leads to tears.

    Except this i dont have any other syptoms of LSA like white spots and because of this i am curious if i really have LSA or i misdiagnosed. My doctor said that the tearing will stop after 6 months top but i still have after sex. I am saying again that there are only small cuts after sex usually only one, but its still a problem.

    I also have a minor problem with tightening of the foreskin. The glans can come out at normal status but if i try when erect i take tear. I didnt had this problem until 7 months ago, when the LS started.

    So i believe that if i stretch enough the foreskin for about one month maybe i heal also the tearing. If i really have LS.

    Anyone else out there diagnosed with LS but the only symptom is small tears and treated for a period like 7 months and still have symptoms?

    I also want your opinion if my disease is LS or something else. And if it is LS how long until i stop having tears?

    I use moisturize cream before sex but the problem remains. Better than try sex without cream but still the problem remains.

    Thanks in advance.

  75. Allen

    I am kind of relieved but scared at the same time to find this site. I am a 16 year old male and have been searching for a while now, why my penis looks so… different from all the others i have seen. I was wondering if anyone could give me some advice on what to do. Talking to my parents about it wouldn’t be the best thing to do at this point in my life.

    I have no problem retracting my foreskin, aside from a little bit of tightness, and only experience pain every once in a while, only in the tip of my urethra. But my head is pale and wrinkly, and little white bits form where the gland and the foreskin meet. there is also occasionally itchiness on the inside of my foreskin.

    i haven’t had sex, but would like to try it with my boyfriend, although I am still afraid to tell him about my condition.

    some advice would be greatly appreciated. thanks.

  76. Mick

    I had an incident about 22 or 23 years ago where the little strip of tissue connecting my foreskin was torn. I was subsequently circumcised 10 years ago due to a ring forming at the end of my foreskin and I am sad to say that I now have a white patch of thickening skin around the opening in the glans of about 12 to 15mm or so across. It has been diagnosed as BXO by a consultant urologist and I am told that my circumstances are quite rare. I will admit to being more than a little concerned and quite frankly fearful of my future prospects.

    Essentially, the circumcision bought me a decade but obviously I now have trouble on the horizon. If I use the steroids, if I take Vitamin D3 or anything else anybody can suggest to me, is it certain that it is going to spread regardless or can it be controlled, or even regressed to such a degree that it will only flare up every so often? Should I request specific tests for certain conditions/allergies?

    Sorry for all the questions but I need to know what to do about it. It is getting to me to be perfectly honest and I want to do the best I can to fight it.

    Thanks,

    Mick

  77. pete

    i have white spots on the head of my penis and white bumps under my foreskin sometimes it is tight and is somewhat painful to retract in the morning from what ive researched this has to be lichen sclerosus> i recently tried terrasil max and it seems to be working for the ‘stiffness of my foreskin. although it is hard to tell whether the white bumps under foreskin or spots on penis are dissapearing just yet i am hopping this works out. i have had this for about a year now. does anyone have any opinions of helpful words?

  78. Rick

    Hello all, I am a 38 year old male and I have read a little about Lichen Sclerosus Et Atrophicus since being diagnosed in September 2012. My story is a little different, as I am circumsized and while I do not have the foreskin problems, many of you have, I still have problems. I would notice redness on the head of my penis for about a year prior to finally going to the doctor, but never did anything about it as I thought maybe it was irritated from my clothes, or too much masterbation. The redness would come and go, usually affecting the head of my penis and the skin near the head of my penis. It was not a huge issue (I thought). I then began to notice a white ring that would appear sometimes surrounding my peehole, usually with redness as well. This would come and go, so I still did not inquire about it, as modesty got the better of me and I was embarrassed to tell anybody. this went on for a few months, until I was no longer able to ejaculate as I normally did my whole life. I noticed that when I would have an orgasm, I would no longer “shoot”, as i once did. It felt like there was no force behind it anymore, and the sensation of orgasm became non existent at best. I had lower back surgery a year or two before, so I figured this might have effected me in this way. Next I began to have frequent bouts with urinating standing up, as I began to spray, rather than have a steady stream. This went on until I had to sit down to pee everytime I had to urinate as it began to get progressively worse. I (stupidly), still did not say anything to anybody, as the thought of going to a doctor and telling him all of this was just shameful to me. I also thought it might have something to do with the Prozac I was on at the time, as my libido was severely decreased from when I was not taking the medication. I stopped taking the Prozac, thinking this was the cause of all my problems. I continued to have all the same problems, not taking the Prozac. I was not experiencing most of the redness and irritation while I was taking the Prozac, (because my libido was gone), and I was not masterbating anymore. So my symptoms would come and go, or be covered up by things I was doing, or not doing…..for many months so I was not quite sure what the hell was going on with my body. Finally, I began to experience stinging when I was urinating, then pain shooting from my kidneys as I was urinating. I noticed that my peehole seemed to be closing on me. the whole top of my peehole seemed to be fused together, where they used to be seperate. Now I began to get scared. I knew something was definately wrong, but still continued to just live with it for a while. I was urinating frequently, and I would literally sit and urinate for 2 to 3 minutes straight, because it seemed I had all this pressure building up to urinate, but it just had so little of a passage to actually leave my body, I was left with stinging, and shooting pain from my sides throughout the day. The final straw came when I was trying to urinate in a public bathroom urinal, and because of my spraying issue, I was trying to urinate in the urinal, but ended up urinating on a man’s shoe who was sitting in a stall next to the urinal. i was so embarrassed and ahamed, I finally called the doctor, who had no answers for me, and sent me to a urologist. After waiting a few more months for that appointment, I told him what was going on, and I was scared I had cancer or something, as I lastly was experiencing pain in my testicles in the last months or two before my urologist appt. He told me I had BXO/LS. He said that my uretha was supposed to be pink in color, and when he looked at it himself, it was pure white inside. Also he said he was going to look inside with a camera at my prostate and take a biopsy of the white skin, and cut my peehole open again, as that was what happened with this disease. I had the operation and he told me in a follow up appt that he was giving me Clobetasol Emollient. He also told me that the LS had spread into my urethra deeper than he thought. I had to apply the Clobetasol to my urethra, by putting it on the end of a q-tip and sticking the q-tip in my penis at least 2 inches deep. It was the only way to get the cream in my urethra. I was thinking if I had a foreskin, as he explained this disease when it is found in men mainly affects their foreskins, and they get circumcised, I would have been better off, as I could have had the surgery and been done with this. My urethra at the time of surgery was 3/4 the way closed, this was why I was having all the pain. So for September and October I had to stick a q-tip with Clobetasol in my penis twice a day. This was not easy in the beginning as my penis was still healing from the doctor cutting my peehole back open, and the fact that my urethra had become significantly more narrow from the disease. It was too painful the first few times I tried to do this and I did not think I was going to be able to do it. Finally on day 4 or 5 of attempting this twice a day, I was able to get the end of the q-tip in my penis. Putting the q-tip with the Clobetasol in my penis not only treats the desease in my urethra, it keeps the urethra open, because the disease is constantly trying to close it up on me. My doctor told me it is either this, or if the disease spreads to my bladder, I will have to have a peehole reassigned at the base of my penis above my testacles. I went to see him for a follow up after 2 moths of treatment a few days ago and he siad I am doing great it seems. I still have to sit to pee, as every once in a while I will have a bad day and just end up spraying again, so rather than go back to cleaning up urine after using the bathroom, i just sit all the time now….I have been doing it for a year or so now and it has become second nature to me, so I dont mind. He also was pleased that the whiteness inside my urethra at the tip of my penis is returning to a normal color. It isnt fully returned, but I remember 2 months ago my urethra inside the tip of my penis was as white as a sheet of paper. So I am happy that it seems to be helping. He does have to put the camera back inside my penis in December to see if the Clobetasol is working as good inside my urethra as it is working inside the tip of my penis. I am hoping the disease has not spread any and I will be ok. The last thing i want is for this disease to spread further down my urethra because then I will be in huge trouble. I am hoping for the best and have accepted that I will always hve this disease, and I have to live with it. Some days are better then others, and I am hoping to just have more good days than bad ones at this point. I cant believe I am going to actually post this story, but if my words can help anybody going through the same thing, then it needs to be said. Also, it is a another perspective from someone who has this disease and is circumcised, as I was reading some of the posts and saw a few requests from some of you guys who wanted to hear some feedback from someone who was circumcised with BXO/LS.

  79. Chris

    Hi Everyone,

    I have just found this website I am 43 and have been diagnosed with LS although I am waiting to have a blood test. I must add that I am black so do not have the white spots just dark circles. I have only 1 on my penis on the shaft and 1 near my anus and a few areas all over my body even on my feet. I was circumcised when I was 11 which may be relevant. I do not seem to be having the problems some of the posts suggest but `this might be because this is quite new. My doctor has given me Betnovate (ointment) betamethasone to apply twice daily, he does not seem to have much information for me so that is why I found this site by surfing the net. I would appreciate any helpful tips.

    1. Rick

      Chris,

      I assume the dark spots maybe how the skin appears when it dries out on blackmen, as it turns the pinkness of the head of the penis on white men white. i have been using Clobetestol, and it seems to be working…

      Rick.

  80. pete

    thank you for that Rick, its not easy spilling ones inner most secrets, but I think you have given the guys another perspective on l.s. Good luck in your “containment” of it. I hope you mange. By the way can I ask how old you are?
    Cheers
    Pete [l.s. for nearly 30 years].

    1. Rick

      Hi Pete,

      Life caught up with me so I havent been able to sit down and read the site for a while. Thanks for the encouragement. It is extremely embarrassing for me as I have always been modest, and that unfortunately probably led to the spreading to inside of my urethra. I am 38 years old (for another week or so anyway). I finally have my appointment set up for the beginning of December for the urologist to put the camera in and see if I am clearing up inside the urethra. I really want to tell you I admire anybody who has dealt witht his for 30 years. I hope you are doing good with everything.

      Rick

  81. Rick

    Hi all, Just reading through some of the posts, and wanted to add that on my last appt with the urologist, I asked him about the redness I experience, on the head of my penis and around the circumference of my penis immediately below the head on the shaft of my penis. I told him I use as much of the Clobetasol as possible, because I want to make sure the effected areas are being treated. He told me I should use as little as possible, because it thins out the skin. So this is kind of embarrassing to ask, but I figure some of you guys have had this disease and know a lot more about it than me. I am not taking the Prozac anymore so my sex drive has returned, and masterbation is difficult because of the redness. I could just stop completely and I am sure all the redness would go away, but I do not wan to live the rest of my life without sexual release, so is there something as lubrication I could use that would help me not have all the redness and irritation near the head of my penis? I have tried astroglide, but that still leaves me with redness, and if I use it while my penis is still red and irritated, it stings too much when I apply it, so masterbation is not pleasurable. Is there anything else I could use or try that might have worked for you or do you have to wait a few daays after having sex or masterbating for the redness to clear up before you can perform again? Also for you guys who are using the Clobetasol, and have girlfriends or wives, does this have any adverse effect on your partner?

    1. Post
      Author
      admin

      Hi Rick. Reading your second message – I thought I would offer this, although not sure it will be helpful but it is food for thought.
      In general, the information I receive from the doctors that work with me is that urologists and gynaecologists do not receive training in skin disease (which LS is). Therefore, they do not undergo the training in skin and the use of creams and ointments that dermatologists do. The issues appear to be, that redness equals inflammation, clobetasol/potent steroids act to reduce inflammation. There is a published paper somewhere that states that steroids will thin normal skin but because LS skin is not normal it will not thin the skin if used carefully. Fear amongst doctors regarding skin thinning is rife and particularly in the USA. However, another published paper will say that if steroids are thinning the skin, then ceasing to use them will return the skin to normal status. My understanding is that the Clobetasol is absorbed into the skin within about 1 hour, so maybe using well before intercourse is the answer? Very, very difficult to evaluate this kind of information Rick. From a female LS viewpoint, sex or masturbation will make the vulva red as well, so we have similar issues. The next offering is to say that an amazing number of women (and some men) have found using the lubricant called YES to be helpful. http://www.yesyesyes.org This product is available in oil based form and seems to be less stingy than water based lubricants. If you phone or email them and tell them I suggested this, they may send you a sample to try. I shudder at the thought of anyone offering you advice to stop using steroids on a Forum, website or anywhere else because only your own doctor can do that, and given the information I posted above, even then, it would be difficult to know if stopping the steroid treamtment would cause more problems than continuing to use it. In my own case, (over 18 years now) I have used my steroid ointment (Dermovate aka Clobetasol) as prescribed and I have no thin skin and remain able to be a fully functioning woman. What doctors need to do is tell us how much to use of our treatment for our own individual needs! Please keep us posted if you find something that works well for you. Fabia @ Admin

      1. Rick

        Hi Fabia,

        Thanks for your reply. I am still new to this so it is tough for me to speak frankly about the sexual aspect when dealing with this. I figure the only way to help myself and hopefully many others (men or women) who have this skin disease, is to just try and not be ashamed of speaking the truth. The only way we can help ourselves is to have information, and my doctor doesn’t have this himself, so my only resource is to try and be open to others who do have LS. I have checked and there is not much info out there, and this is the only forum I have found where people who have LS actually discuss the disease and their experiences. The Clobetasol has so far been working good for me, so I have no complaints, and at least now I know not to use as much as I was. It seems to be going pretty good. Thank you for the suggestion about YES. The only problem I have since starting treatment is I sometimes have a dull pain or ache halfway down the shaft of my penis. This is not everyday, so I can live with it if doesn’t get worse. I know you are female so, I know I don’t know if females experience any aching on their labia or anything. I havent seen any posts about this in what I have been able to read, so if another male has experienced this, maybe they could tell me if it is a normal part of having the disease. My only other complaint is that I still have more redness than usual toward the head of my penis, but I am a little ashamed to admit, that I think it is because I masterbate too much. just a few months ago I thought I would never be able to function properly when having an orgasm, so I am just happy that I can actually have some pleasure again, and function like a normal male that I might be making up for the year or two I went without an actual orgasm that was slightly pleasurable. Also, I did assert myself to go and speak to someone in my area who has an adult oriented store. I asked about the astroglide, and she knew exactly what I was talking about as she had heard similar complaint from others who had tried using that lubricant. She suggested that I use a product called JO H20. She told me that with this lubricant all you need is a little, and it would actually last as long as you needed it. It is a water based lubricant that is not sticky like astroglide, and you dont need to keep putting it on every couple of minutes. So as I was completely embarrassed at this point, I bought the biggest container they had, so I wouldnt have to go back there…..Anyway, after using it for the last 2 weeks or so, I can say this lubricant is really good. I still have some redness as I said, but I think without this lubricant, I would not be able to enjoy masterbation again. I dont know if anybody else has tried this lubricant here but I can say it has been working for me so far. I want to thank you for running this forum, for us as like I said I don’t think there is anything else out there.

        Rick

  82. pete

    Rick high again. I have had l.s. for almost 30 years. I still can have an erection, good massage for over 2 hours at times. Sex. BUT I do take orally vitamin e oil capsules, 400 mg, omega triple 3 oils 1200mg, vitamin d tablets, vitamin b complex tablets and 1000 mg vitamin c every day. I also use vitamin e oil and emu oil to massage really well into my foreskin, which I believe keeps it supple and not splitting / scaring. I massage at least once a day. for as long as time permits. I use clob [steroid] now and again, maybe once every few weeks, [ thats my regime] in a really good covering all over head of glans , inside foreskin and leave on over night.
    I have just started accupuncture for Kidney yang defeicincy [ thyroid and plantar fascia] and its the first time I have ever had itchy willy. I believe its the accupuncture freeing up my energy zones.So I am putting clob on every few nights for a while. Unknown territory, but I am always prepared to experiment. I have also tried increasing my totesterone levels, but no real change and a few months ago I used horny goat weed [ a natural viagra] not that I need it, bit following on with the accupuncture theme , horny goats weed is a natural chineese tonic for boosting the kidney yang. So I have just ordered some more. My partner has said she gets excited by seeing the swollen REDNESS of an enlarged penis, and sadly as my glans is all white now, cannot offer this pleasure to her, BUT being positive I can still get and keep an erection for a few hours without any pain or discomfort. SO I always try to advise both females and males to make sure they keep masturbating, using good oils , keeping skin supple, remember use it or loose it. Its only a shame its too late for some. As for circumcission I have never considered it, and wouldnt, I have read far too many stories over the years of l.s. developing far worse in the scvarred tissue afterwards. BUT we are all differant , so each to their own and I respect their decisions.
    Best wishes
    Pete

    1. Rick

      Hi Pete,

      We seem to have the opposite problem. My hell is your heaven so to speak. My penis looks like it did again before I started the treatments, except the redness all around the underside of my penis, just below the head of my penis. I am glad that from using the Clobetasol, the my urethra is red, and not all pure white like it was. My doctor said it should appear pink, but I think I really need to cut back on my masterbation. I really do not know what it is, but I am actually feeling more horny now than I can remember feeliing for long time. I feel like I am 18 years old again. I do agree that masterbation and sex should be something that we should be able to enjoy despite our disease. My problem for almost two years was that I had trouble ejaculating. My urethra was so closed up that ejaculating was painful at times, as my semen just had no free passage to escape. I am in a place again where I am getting the volume of ejaculate I used to have before all this started, and I am able to “shoot” again. Not like I did before, but I will take what I can get. I feel more like a man again sexually, and it feels good to actually have “ejacualtions” that I cant seem to stop now. I never had any trouble getting hard myself, so lately I think I have been masterbating 3 to 4 times daily. I did read in a few posts that pre ejaculate will contribute to any redness on the penis with this disease. That might be some of the cause of my redness as I am wet a good part of the day. I might try to stop playing with myself all day and see if the redness clears up a little. I also might try some vitamins as well as I have noticed this more and more and it seems to be helping a lot of people. I am going to ask my urologist about vitamins when I go for the camera procedure in a few weeks. As far as any supplement that has “horny” in it, I clearly dont need. I think I need the prozac again, so I can have a minutes peace!!!!!!!!!! I am glad that you can still have pleasurable sex with your wife still. I am a little hesitant to get back into the dating/girlfriend world, as I don’t know how a woman will react if she knows I have a skin disease in my Urethra. I dont want to get to a place where I have feelings for a woman and she feels funny, about the disease I have, or worse if she asks me if she can catch it from me. I wouldnt know what to say to her. I would be so ashamed. As far as the itching, I only had it before I started the clobetasol. I would sometimes just get a horrible itching sensation mostly from the inside of the head of my penis and a little in the shaft of the penis itself. Looking back, I know now it was because my urethra was drying out from the disease. Maybe your itching is because your skin is dry and athrophied? In my experience since I have lost all the whiteness inside my urethra (at least what I can visually see), I have not had any itching. Like you said we are all different, and we are ultimately dealing with the same disease, but different symptoms.

      Rick.

  83. Chris

    Hi Rick. I have just read your long post detailing all the problems you were experiencing. I left a post on November the 5th stating that this was new to me but now I think I have had this for a very long time. I stated that I was circumcised when I was 11, this was because my foreskin
    could not go back and urinating was a problem with jets going at odd angles. Your post has opened my eyes and I think I need to talk to my mother about what was going on at that time.
    At the moment I have not been able to have a full conversation about this with my wife as I do not fully understand about this and I am reading as much as I can (although most of what I have read is directed towards women). She seems to think that I have something that can infect her, and where did I get it from.
    Hope things go well for you.
    Good Luck
    Chris

    1. Rick

      Hi Chris,

      I am so glad I helped somebody even in the smallest way. I am fairly new to this, and I went through everything you are talking about. I though I had Cancer or something. My first appointment with the urologist he listened as I told him my story, he saw that my peehole was clearly closing, and opened what he could and saw it was all white inside. I had noticed it before but was so embarrassed that he was looking at it that I acted a little surprised and then asked all the questions I could. He basically told me it was a skin disease. I was astonished as it was clearly all at the opening of my peehole. Then he found it had spread into my urethra. I could not believe I had a skin disease in my urethra!!!! Of all the places!!! When I got home from my initial appointment, knowing he was going to have to cut my peehole open again, stick a camera in me, and I had this disease with a weird sounding name. I googled it when I got home, (and finished crying), and all the info I could find was that it was something women normally would get. I looked at all the pictures, and it was horrible. I felt realy bad for any woman who had this, then my thoughts turned to the fact that I am a man, and I have a disease women get. I was so ashamed and thought I could never tell anyone, and my life at 38 years old was over. The worst part was that I knew it was something I would have for life. Then all I could find about the disease was that when men got it, it was something that uncircumcised men got. I remember reading about this, and just crying, as I was so scared, and extremely embarrassed. I told my closest 2 closest friends, as they knew of my problems, and asked how my appointment went. Well that was a hard conversation. After assuring them it was NOT A STD, and it was nothing that I did that caused this. I tried my best to explain. The whole q-tip thing, everything…..I just figured, I knew it was nothing I did, as I knew I hadnt been with anybody and “caught something”, so I figured the truth is was it is, and bit the bullet. I did have my uncle talk to a doctor he knows in Boston, who is supposed to be one of the leading doctors in my area. I gave him my result paper to show him and everything. He told my uncle that my doctor had it right and he was prescribing the exact treatment, that it is going to take to get it under control. I know what happens if this is not under control, and it spreads back to my bladder, so I REALLY need to handle this. You really need to talk to your wife about this and she really needs to listen. I have the same thoughts as i think you and your wife might have. I dont think it is something that she can catch from you, as if it were, this disease would have a lot more attention in the world. If it is any comfort to you, one of my “friends” iI had told a at the time was a woman, who I was kinda flirting with, and was my kinda girlfriend, but me never did anything sexual. That did not work out for totally unrealted issues. She had a few health problems of her own so I think, she could understand that it wasnt my fault, and I even told her all about the Q-tips…everything. It was hard for me to talk about my issues with a woman I was romantically interested in, but looking back it was no big deal. It is what it is. I have been though all the range of emotions…anger, denial…finally acceptance. It takes time. I have questions still about my treatment that I cant really ask my doctor, as I am to embarrassed to ask. I might just let it all out on the table when I see him next. I saw that one of the side effects of the cream I am using is Cushings Disease. I immediately asked him, when i saw him the next time about this, as I really do not want to be treating BXO/LS and end up with Cushings Disease. He assured me that even if my body absorbed all of the treatments it wouldnt be enough to trigger this. He said that is mostly a side effect when the agent in clobetasol is taken in a pill form, it might happen, and then the odds are rare. So I do have a few other questions, I dont know if it is kinda what you are thinking, but as we are both men, I am sure I cant be too far from the mark. I am 99% sure your wife cannot catch LS/BXO from you. Maybe someone else who has been dealing with this longer would give you a better answer. I worry about what the disease’s effect is on my ability to have children, as my urologist asked me while he had my peehole spread open in his office if I had any children. i was afraid to even ask at that point if I would not be able to or he was making small talk. I also worry about sex stuff concerning my treatment. I wonder about putting this Clobetasol in my uretha, and maybe in the future, I meet someone and me have sex, if I ejaculate inside of her, will it effect her at all? Also I worry about oral sex, and If a woman is performing oral sex on me will the fact that I might have a little Clobetasol remaining in my penis, effect her if I ejaculate in her mouth? Believe me I never thought I would be even be discussing the things I have discussed here, as I really do have questions, but how do you really ask them to somebody, without feeling like a degenerate or something. So I do really understand and if it helps at all, have your wife read my posts, and some of the other posts, to see that if it is LS, it is not your fault, and you cannot infect her. The effects of Clobetasol on a woman I am not positive of as you can see I have questions still myself. I assume if women use Clobetasol for their LS then it should not be a problem at all, vaginally at least. I dont know anything about oral sex and clobetasol. Maybe a woman who uses this treatment can tell us if, their husbands can still perform oral sex on them if they are using the clobetasol? I am not stupid, I know if a woman was treating her labia with medicine, she would surely wash the area, before her husband performed oral sex on her, but how do you ask someone that question? You know? I am sure you wife has questions as well. I think maybe she should go to the woman’s side and ask there. it would be easier for a woman to ask another woman, than a guy going over there and asking all these questions. I would love to feel comfortable enough with a woman who knows a lot about this, where i felt I could ask anything, without feeling like a pervert or something, but I am not fully at that point and/or have not had the opportunity. I am like you in a lot of ways and I am just trying to learn as much as I can about htis disease I have, but it is in many ways a sensitive issue. Chris I do understand about you not wanting to talk about it, as a the end of the day you want to know, that you are ok, and you want to feel like a man. If you had told me 4 months ago I would be on the internet talking about my penis, and other mens penises, and telling people about my masterbation habits, etc……Its all a liitle weird, but we need to realize we really need to discuss these things, as embarassing as they are, because we ultimately want the same things whether we are male or female. Please make an appointment right away and have it diagnosed, one way or the other. Learn from my mistakes, and see that I too didnt want to talk about it, and was extremely embarassed, but that only allowed it to spread into my urethra. I am stuck sticking Q-tips in my penis twice a day for probably the rest of my life. I thought at the time it was a death sentence,but now realize I can live with it, and just want to function like a normal man. If I can be of any help, or you have any questions please let me know. I wish you the best.

      Rick.

    1. Rick

      I never had blisters or scabs….I dont know exactly where on the penis you are referring to so I cant fully answer the question, but I do remember before I was diagnosed and started treatment I would have this horrible itching from inside the head of my penis. is that what you are referring to or something different? If it is the foreskin maybe someone who has one can help you with that?

  84. Lee U.K (isle of Wight)

    Hi all,
    I’ve been reading all the posts on this forum and would like to thank all who have written comments and stories of their LS experiences as there is no other site dedicated to this condition which appears to me to be growing amongst men. I have L.S and am withing two weeks of my advised (at the moment) course of treatment ie:- Circumcision etc… so decided to share my story from start to finish for anyone interested.

    (My Story) – About 10 months ago I noticed some small white patches on my foreskin, quite smooth but with no irritation and thought to myself that ambe it was just a bit of a reaction to maybe some washing powder change etc and forgot all about it…. suddenly after a few weeks of no other symptoms than the white patches, my foreskin went tight! so much so that I had to keep manipulating it till I could retract it over the glans, OUCH !… this I think caused some fissures to form around the white area and I also noticed, after I eventually got the foreskin back fully some discharge or something and quite a fishy smell which lasted about 3 days.

    After these few days had passed and with me all the time manipulating whilst in the shower I was left with a band (Phimmotic ring) and a retractable foreskin with no other symptoms for about the next four months and so again thought that I must of had some reaction…..and passed it off but kept an eye on things. The band was getting noticably tighter and after a few weeks of waking with the old term “Morning Glory ” which was being strangled by this band and what I also thought was causing my urine stream to be affected I sought the help of my G.P (with the aid of a few pic’s i’d taken in an erect state to explain things) and was reffered for a urology appointment at which I was told in seconds I had L.S and needed a circumcision and also a dilatation as my urethra exit was too small. Well I left feeling confused and felt i’d been rushed through an appointment with more and more questions popping up in my head from each day on and wanted answers…. answers I could not and still can not find!! ??

    Why is it so hard to get these answers….. So I asked at my pre addmission appointment for another consultation as I had found this site along with the ref on an earlier post to the BMJ report, which made for good reading, (Thank you) and in it, it stated that the first point of action should be a dermatologist and the use of dermovate and in which 60% of the men studied using it had reversed symptoms. It also stated that often men who were presenting to to a urologist would under go a circumcision as standard treatment………. Im confused again I thought…. how can these two areas of medical practice have completely different courses of treatment for the same condition???? more answers needed but where from? What do I do.. Ive never been given the option of seeing a dermatologist or the cream, hey… my doc didn’t even look at my penis … he just looked at the pic’s and reffered me to a urologist.

    SO, I had my second consultation. It was with the top Urologist at the hospital…great I thought a second opinion…. just what’s needed I thought…. But No… He asked “Why have you not had the circumcision yet”? .. “because I’ve read that Dermovate cream is the recommended course of action and I haven’t been given that choice and so I wanted to discuss it further with you” I said… “Hmmm” he winced and said… “I’m a Urologist so I would never recommend that !”

    What now I thought, so I said that i’d read that it can come back in the scar tissue after a circumcision and sometimes worse too… and it did what would the treatment be? He said
    “Dermovate” ! So I said that’s why I think I should try that first.. to which he said that in his experience nearly all patients will eventually need a circumcision so ….well I initially came out thinking that’s obviously what I need then, but now im again not convinced… I still want them to look inside and have the dilatation to enlarge to hole but what do I do about the circumcision?

    I’ve decided to see if I can see G.P this week to get some dermovate cream and explain my dilema and failing a good response to that may self admit to GUM clinic to see a dermatologist….

    I really do find this frustrating that their seems to be for me anyway a one way direction of treatment..

    Will keep you posted!

    Lee

  85. pete

    Hi Chris, please firstly confirm to your wife that l.s. cannot be passed on from one to another. I have over 30 years had several partners / wives and can confirm it is Not passed on by contact.
    As for a tight foreskin, it doesnt necessarily mean you had it from then, other symptoms cause that also. Any white patches, looks like thrush, to some less informed doctors may indicate you had it. But again whatever happened back then, you are where you are now. So please go and tell wife she wont get anything. If it helps I can talk to her , either on here or via the facebook sites where I chat to many women, and sadly few men. is your foreskin still tight to move? if so please use a good oil, vitamin e or emu oil and lubricate skin well , use it regularly and massage it in, remember an erection increases blood flow and helps remove toxins from region[ I am a qualified masseur] good luck

    Mark… Have you been diagnosed with l.s., seen a dermatologist?

    Out of interest I detail below my daily regime, from a post on facebook l.s. forums, may interest some of you guys.

    Update on Accupuncture and fascia plantar / thyroid problems.
    Well its into 3rd session now of accupuncture. and I must say for whatever reason I am improving. My legs dont ache anywhere near as much, my get up and go in me has 100% improved. AND what I cant believe is the white patches on my willy[ head of glans and inner foreskin] have amazingly shrunk in area. YES what an improvement.OH and the real reason I went for accupuncture in first instance was the plantar fascia , I can now walk without constant pain. Now sadly in one way I cant pinpoint the real reason for this improvement, because the accupuncture which was used to free up my energy channels may have freed up other parts aswell. I also have again started using horny goat weed, which is an ancient energy booster. So to outline my regime I have listed below what I use and do daily.
    First thing levothyroxine 25mg [for thyroid problems] from Doc
    2/. lansoprazole 15mg from doc for Hyatius hernia
    3/. Manuka honey
    4/. testosterone tablet
    5/.Horny goat weed.
    6/. vitamin c capsule
    7/. Complete vitamin e capsule
    8/. triple omega 3 capsule
    9/. vitamin e capsule
    10/. 1000 mg vitamin c capsule
    11/. Good massage [ 1/2 -2 hours ] using vitamin e oils and emu oil.Dependant upon time.
    12/. Accupuncture 6 week session.
    Wow when I write it down like that its costly and time consuming, But I can see benefits, the question is is it just short term or prolonged effect of treatment?

    Pete

  86. Lee U.K (isle of Wight)

    Hi again all,

    Following on from my last post, I tried to see my G.P however he is away so am booked in to see another doc this week so will see if I can get a different view and hopefully some help with this circumcision issue that I have as not long till the 30th Nov when im booked in to have it.

    My condition seems to be progressing to a different level, as over the last 24hrs i noticed a ring redish in colour appear around the tip / end where the urethra exits with a pale colour in the centre and wot appears to be a pale white , almost opaque blob protruding to one side of it? I’m guessing that this is the L.S now in a new place, but am not sure. Also … since I noticed this i’ve also noticed the hole is closing up and is now about 1 – 1 1/2mm in dia so im really quite a bit concerned as to wot is happening and how far its gone already and more so what the concequences will be .

    I mentioned before that the urologists said in his opinion circumcision was needed and that because the hole was too small that i needed a urinary dilatation (U.D) and that they will also do a look with the camera (cystoscopy) to see inside the urethra and bladder and that of these 3 procedures i am happy with the last two and especially after the new development. However, I feel that on both consultations that i’ve had and the comments a expressions made, that they didn’t really want to just do those last two procedures without the circumcision? I not sure why but I get the feeling that as its under general Anithstetic they’d rather do it all instead of part
    and the reason I feel this is because when I was talking about the internet and the dermovate etc the consultant said ” Dont believe all you read on the internet, most of it is so out date and Nobody regulates what is put on there” ,, to which I said ” But the stuff i’ve read which states about it coming back sometimes after circumcision and that dermovate should be the first course of action, unless in an extreem case is from the British Medical Journal!” to which he just looked at me in a strange way and stated that he has been doing his job for 30yrs and knows wot he’s talking about…… well……. after some more chat I had come to understand that the circumcision was the best route…. and the reason for my thoughts now or should I say doubts for it are because of what I have read… so what on earth do I do??????

    I hope someone with experience / similar circumstances to mine on here can help guide me as I just want to do the right thing for me and not end up in a worse state.

    I’ve read that it should be a dermatologist we should see but was sent to a Urologist ? I’ve read that Dermovate is the first course of action and has a high success rate but when I suggest this to Urologist I get negative vibes and told I can try if want to but in his experience i’ll end up having the circumcision at a later date anyway?

    When I ask what will they do if it comes back in the scare tissue after a circumcision (as theres no more to cut off) i’m told…. “we’ll give you dermovate to use”???????? I’m so lost.

    If there was a clinical trial going on … I’d rather join in on it as that way at least i’d feel like i’m dealing with people all wanting the same goal.

    Please can someone help guide me?

    To be Continued……

  87. Paul N

    This is the first time I’ve posted on the website, and I’m obviously only able to talk about my own experince of L.S. I tried Dermovate for some years with little benefit at all. In the end a coupe of years ago I had a circumcision – best decision ever. It was v uncomfortable for a few weeks but I have had no issues since (fingers crossed) – wish I’d gone in for the circumcision years ago. I’m sure there are sufferers that haven’t had the same positive experience as I have, but for me (and so far) it has been brilliant.

  88. Rick

    Hello all,

    Just a quick update. I went in and my urologist looked in my urethra witht he camera. He said it looks better and he is satisfied with my progress so far. I still have to insert the Clobetasol 2 times daily on a q-tip in my urethra, but I am relied that it has not spread. I have been getting bouts of balantitis lately, but this passes too. All in all so far I am living with this. I will see him in January and we will go from there. He thinks I might need something a little bigger than a q-tip to keep my Urethra open and this will help with the bouts of balantitis I have been getting. We will see what he says in January.

    Rick

  89. Frank

    Hi, anyone tried Protopic 0.1 ointment for the white/red patches?
    I was diagnosed 3 years ago, I used Dermovate (clobetasol) up until last November. Then I read about a study where the participants achieved fast improvement by the use of Protopic. I used it twice daily for 3 months but now I stopped because I do not see any improvement. The glans got little “foggier”, I somehow feel that I should give up using this ointment
    I am starting to use twice/three times weekly Dermovate again..

  90. carrie

    I need any information and help that I can get please. About 2 years ago my circumcised son, 11 years old at that time, could not urinate and was in extreme discomfort so we took him to the emergency room. The doctor said he appeared to have a urinary track infection even though the few drops of urine they tested did not show signs of infection. They sent us home with an antibiotic and some type of numbing medicine. Later that night he was able to urinate and things went back to normal. A few months later the same thing happened, could not urinate. Took him to the pediatrician who tried to catharize him and couldn’t. They asked him a bunch of questions like if he had put anything in his penis and if he mastrubated excessively. In the end they told us to follow up with a urologist and if things got worse to go to the emergency room. He had so much discomfort because he couldn’t urinate that I didn’t think we would make it home. We were about to head back to the ER when he said he had pulled a piece of skin out of the tip of his penis which allowed him to urinate. We followed up with a urologist who diagnosed him with miatitis. The doctor dialated him and later he had surgery, a miatotomy. This helped for awhile but about 9 months later, same problem, couldn’t urinate. It was about 10:00 pm so we went to the ER. Three different nurses tried to put a catheter in him but were unsuccessful. Finally they decided to call in a urologist but by this time he had gotten so bad because he couldn’t urinate that they had to give him morphine until the urologist got there. The urologist dialated him which immediately brought relief. The ER urologist said that he had BXO. We followed up with his normal urologist who said he needed another miatotomy. He had the second surgery but we only made it about 6 months this time until he started having problems again. We spent Christmas Eve in the ER where he was dialated again. Before we even made it to his follow up appoiintment he woke up one morning and said he couldn’t urinate again. Back for another dialation. He was given a self-dialator to use at home but it is extremely hard to get a 13 year old to do this to himself everyday. Today we went back for a follow up and were told he is going to need another surgery. The urologist said he was going to cut further up this time. I know this is a long post but I wanted to include as much info as I could. The reason I posted to this site is that today is the first time LS has been mentioned by the urologist. The big differenece in his condition and most of the other posts here is that he has no external problems with his penis, like I have been reading about on this site. The urologist said that the LS is on the inside tip of his penis and it is causing scar tissue to form which causes the urinary strictures. I am really worried about him having a 3rd surgery but I am also scared to death that he is going to get another urinary stricture and he ends up in another emergency situation again. At least now he knows if he can’t pee or if only dribbles are coming out to tell me right away so we can track down a urologist no matter what time of day it is. It does not seem like the pediatricians or the ER doctors are equiped to perofrm the dialation on him and when his urethra is blocked his self-dialator will not go up far enough. One other bit of info. when he was younger he always had trouble with the urge to urinate constantly and wetting the bed. We took him to a urologist when he was about 5 but were told they couldn’t fing anything wrong. Looking back I feel like he has always had this condition but it didn’t progress until he started reaching puberty. Again I apologize for the length of this post but any help/insight I can get relating to this type ot LS/BXO would be greatly appreciated.

    Thank you,
    Carrie

    1. Rick

      Hi Carrie,

      Please see my post on November 5th 2012, as it might help. I can only tell you what has worked for myself, as my BXO has caused urethal strictures from the scarring, and I intially had to have a meatotomy to open up the opening on my glans as the BXO has caused it to fuse together at the top. I was told my urethra was 3/4 of the way closed and I was in pain trying to urinate, as it would take up to 5 minutes to empty my bladder. The opening was cut back open, and I was told that if I do not keep my urethra “open”, it was just going to happen again. Therefore I was told to apply a dab of clobetasol to the end of a Q-tip and to put it in my urethra about 2 inches or so. This has allowed my urethra to stay open over the last 6 months or so. I do notice if I miss a day, how my urethra seems to want to close up again. It was difficult the first time or two dealing with the Q-tip as my urethra was closed a little by the time I was healed to be able to get it inside my urethra. I have found that it gets easier once you are able to initally get the Q-tip inside. I couldnt do it the first couple of times I tried, so I used a lubricant on the end of the Q-tip to initally get it inside. Once that was accomplished, using the Clobetasol with the Q-tip itself has become no problem. I am not a doctor so i surely do not want to advise you to do anything without a doctor, but as I read your son’s story, I had the exact diagnosis and the same problems, except for my urethra closing again, as I was told that if I didnt get the Q-tip in there, I was going to have the same issue again. If your son’s doctor agrees, then get precision tip Q-tips. They are tapered at the end and make the process easier, as well as extremely tightly wound to the Q-tip stick. Do not use any generic Q-tips, or as I found out regular Q-tips themselves, as the cotton is not as tightly wound to the Q-tip stick and one time as the was pulling the Q-tip out, the whole cotton end came off. I had almost had the whole Q-tip out when this happened, so I was ok, but it made me think, what if that happened as I had the whole thing in my urethra? Since I found the precision tips I have had no problem. I hope this helps, and I hope your son is feeling better.

      Rick.

    2. tara

      Hi my 9 year old son has LS,he had a circumcision age 8 due to phimosis .We tried the steroid cream paid privately for a dermatologist but had no option but to have him circumcised. He had a slight flare up post surgery and that his urethra was appearing smaller in size.He advised us to apply hydrocortisone cream and to re attend 3 months following treatment.I asked about a dermatologist appointment he felt this was unnecessary.We have had no experience of what a circumcised penis should appear like post surgery.We have applied the cream and the small plaque area has gone his urethral opening appears ok. My concern is that the whole of his glans is whitish in colour,there are no patches it is just very pale and there is a marked difference in colour with the rest of his penile skin.The condition of the skin is ok there are no more obvious white patches it is a uniform colour .I may appear ignorant as I do not have much experience with circumcision but is this part of the LS process and if so is it reversible?Would the skin appear this colour in a younger child? my son now being circumcised is very sensitive to even having a shower or bath,I think he is not used to the different sensation of not having a foreskin. He finds the whole issue of me checking him embarrasing.
      I have had an extremely long battle to get a suitable dermatologist appointment.This site and Fabia have been a god send.my GP thinks I am an overanxious mother,I doubt he knows anything about LS.Eventually I contacted the urologist and he has been persuaded by me that a dermatologist appointment is needed.He has stated that this will be the first child who he has referred.He is a senior consultant!!My son is being treated at a large city children’s hospital!!His urologist has asked me to check that my son can wee from start to finish in 30 seconds.He is due to see the dermatologist in 3 weeks.
      I hope that this dermatologist can educate my son and I on what is the best course of action to take if he should experience flare ups.I hoped that the circumcision would solve this issue,but I suppose time will tell.I do not want him to experience urethral strictures as this is a terrible condition especially for young boys to endure.I cannot see what is going on inside .He appears to be passing urine ok and I have stressed to him the need to tell me.I do not want to frighten him as he found the circumcision traumatic.His urologist mentioned that if the cream does not work he will need a further little operation.This was explained to him that out of every 10 boys the cream will not work in 2.He said I will be “one of the two” mom!!

  91. Seth

    Hello Guys,

    This is Seth from India. I had a kind of white coating formation under my penis head and around formation since April 2012. I visited a doc in Singapore and he advised me a cream and told me to left the fore skin pulled back. The more the moist, the greater the chances of getting infected and I did exactly similar and applied as he advised. After applying the cream for about 4 monhts, the white coating disappeared. But only for one month. And since then, I experience trouble in my pulling back my foreskin when erected. Its really tight. Apart from this, I do have a liquid formation around and under my penile head. I am washing my penis for 2-3 times a day. And after a day, I don’t see the white coating anymore. But it started gradually appearing from the next day. Considering all the symptoms of the LS, I feel I have been affected by LS.

    But I was stil able to retract my foresking when my penis erect with a little pressure. Please advise me. Is this is a non-curable disease? Do you guys think that I am in an advance stage? Is circumcission is the only treatment? I read so many articles on Circumssion. Most of them ain’t recommending the cission as the person looses the sexual pleasure.

    P.S : 1) No boils, No red spots, No inflammation while urinating. Able to pull back the foreskin when erected with little pressure.

    2) White liquid kind of coating formation around and under the penile head. No cut on the skin. a very very light white scar.

    Regards
    Seth.

  92. Seth

    I tried to purchase Dermavate cream here in India. But couldn’t find it in any store. Is there any other substitution for it with the same formula? Please advise.

    Regards
    Seth

  93. Post
    Author
    1. pete

      Hi Guys, been a wjile since I have been on here, it would seem, though I am no medical expert, just a l.s. expert of some 30 years that Rick and Carrie, you both have l.s or BXO as its used to be called 30 years ago for men.[ now most medics combine it all as l.s.] It has progressed with yourselves to the stage where it affects the urinary tract, and yes differant methods have been tried to keep it iopen. I am aware that on occassion it has been necessary to remove a certian portion of penis to overcome problem, but this is extreme cases. However as we now know more cases of l.s. are being published every day, more people coming forward confirming they have it. Especially the ladies, on facebook sites, many ladies chat about their condition and report on their way of coping. Sadly men dont do this, so we are left more in the dark as to what to do and how to do it to help. It would seem and I have a lot of support from ladies all over the world that massage, stimulation, increase of blood flow, [ masturbation] is indeed the best way of keeping things working. Using plenty of oil, as my other posts suggest, keeping moiste, will help prevent skin from drying out and cracking and loss of a retractable foreskin. The white patches physmosis of skin, may never go, mine hasnt, indeed it slowly spreads, in my case covering most of glans, foreskin and slowly working its way down shaft. BUT I can still retract foreskin, and have an erection / sex 30 yrs on. Seth , you sound like early stages so what I have achieved may well be possible for you.
      Again I highlight STRESS is a real key to the spread spread of l.s. DONT STRESS. its hard but I have seen my white patches multiply if I get stressed. As for circumcission, each to their own , and if there is no alternative due to stage of condition, you have to go for it. BUT majority of reports confirm l.s. will only come back on scar tissue.
      For those with money stem cell treatment is a possibility dependant upon stage of l.s. , presently a doctor in Italy has performed this on a few men, supposedly successfully[ i have spoken to the men and also the doctor about it] It is a possibility, but early days with males, however for females it seems to work well. Time will really tell.
      Sad to say no real magic cure, but a cure is a relative thing, to me to be able to live, enjoy life to some degree is good news. The future we dont know about, and maybe thats good news also.
      Fabia has asked me to comment on above posts to see if I can offer some support, so if anyone wants to know more please ask, may I aslo suggest reading / joining the facebook l.s. sites[ 2 off them] as the ladies points of view and their personal regimes may help us as males. We are all indeed in this together whatever sex we are. So lets fight it together. Dont be shy, dont be embarrassed,
      cheers all
      Pete

  94. carrie

    Thank you Rick and Pete for both your personal experiences and knowledge of this condition. It looks like my son will be getting his 3rd meatotomy in March, that is if he makes it that far.He told me a couple of days ago that urinating was becoming more difficult. He has had pain, bleeding and spraying when urinating for the past 2 years so he will usually only tell me or his dad when things are getting worse. I am trying to stay optimistic and will continue to hope that this next surgery will be the miracle cure even though realistically I know this will not be the case.

    Rick – I will mention to his urologist about the Q-tip and medication that you mentioned. I have brought up different types of medications to the urologist before but he said that he has not seen any success with using a topical type medication. He has told us numerous times that my son’s condition would be easier to treat if it were on the outside of his penis versus right inside the tip. He also keeps telling my son that this is basically something that will have to be managed for the rest of his life.

    Pete – do you think it would be appropriate to direct my son to this website, he is just 13. I know he probably has questions that he is too embarrassed to ask anyone but maybe it would be beneficial for him to read other people’s experiences. I will respect your opinion on this.

    Do you know of any place he can get information on L.S. that would be geared toward his age and males?

    Again, I appreciate both of your responses to my original post.

    Carrie

  95. Phil

    Hi
    My name’s Phil, I have had L.S. for 17 years and I’m now 56. I have been reading this website for a while and have found it to be very informative and supportive.

    I was diagnosed after a biopsy and the urology consultant at the gum clinic put me straight on to clob (Dermovate) which cleared the tearing up but I was left with a gradual whitening of the skin. I put some clob on it now and again if I notice a tearing.

    Thankyou Pete for your regime advice, I have started using triple refined emu oil and vit e oil and also taking similar oral supplements.

    I have just started a new relationship and its obviously going to become more intimate. Pete you say that you’ve had a few partners, so I was just wondering how you have explained to those partners about L.S. before you slept with them, as I’m completely at a loss how to explain it without putting them off before I even get going. I would appreciate your comments on it.

    I’m also wondering whether AJ had continual progress with sms and bee pollen. Did it show any improvement with you Pete when you used it?

    Stem cell procedure sounds interesting but can it take the whiteness away ?

    I also presume there must be older men out there who have had LS for many years, it would be interesting if they could come forward ?

    I have a consultant dermatologist now who I have a check up with periodically.

    Phil.

  96. pete

    hI pHIL, woops caps, not sure of older men, I`m 60 and had it for 30 yrs, most men dont talk as you know, the ladies on the facebook sites talk more and I often chat with them if you join you could ask them the question of explaining it, dont be shy , they`re a good bunch you can have a laugh with, they appreciate honesty and a giggle, we are all in this together. In my case the stem cell treatment is we think too late, the white physmosis has spread too far.
    I would just explain its an auto immune problem affecting your skin, tell them what is is, inform them its non contageous, and suggest they check it out, if initial sex is planned a condom is best and prevents any risk, from all sorts.
    maybe suggest if serious involvement they read up on facebook forums, chat with some ladies etc, indeed even Fabia on this site, though i know she is very busy. But take it steady, let relationship really develop first, make sure there is a serious connection before any sex, apart from kissing. Take time, build up her trust, assuming its not just sex, if latter, just sex, condom , dark lights and no one will know,
    be sure what you want. I know as men its sex sex sex, but if a genuine partnership is sought TAKE TIME….
    mms, bee pollen, and all the rest, who knows if it really makes a differance, I really dont, I wont give up trying, I can still pee normally and get an erection so something is working, maybe just being positive, I honestly dont know. MSM , increasing testosterone, suggests it can work, but against is heart problems/risks, I think most of all is erections, keeping blood flowing, oils for foreskin, and massage probably helps. As a masseur I know massage to any parts of body is beneficial, so why not penis or ladies bits….good luck.Pete.

  97. Daniel

    I was 19 at the time (in 2011) when I first noticed a white hard/patchy ring on the tip of my foreskin. I’ve listed some points as to what I believe were the main factors that contributed in me developing Lichen Sclerosus.

    Uncomfortable Sex
    Low Levels Of Vitamin D
    Stress/Depression/Loneliness

    It all started when I my first sexual experience. This was my very first time having sex (as well as getting naked) with someone however it was extremely uncomfortable. In addition to not really knowing her that well besides that she also goes to University and doing a degree within my faculty, she would have never been the type of person I would consider having sex with. However I was depressed and kind of lonely at the time in addition she was also nice so I reluctantly agreed to have sex with her. The sexual experience I must say for me was very nerve wracking.

    As students we both lived on campus and our room walls were very thin so she drove me to a secluded area in a park and that’s where all the action happened. Due to my inexperience we only gave each other oral and mutual masturbation.

    Despite it being uncomfortable I did produce an orgasm. After we had sex, she drove me back to my college accommodation. Once I got out of the car, as she droved away, I ran to a nearby tree and tried to throw up (spitting, coughing). I honestly felt very sick to my gut thinking “Oh my god, what have I done!”. Whilst freaking out I quickly went to the bathroom and had a long shower. I brushed my teeth, cleaned my tongue and inside around my mouth ‘very’ thoroughly. I’ve never felt so stressed and disgusted with myself and what I had done in my life! During my long shower I cleansed my body including my genitals with 2 different types of body cleansers (one was a generic antibacterial body wash and the other was a dove bar soap) with the emphasis on my penis, foreskin and surrounding areas.

    When I awoke the next morning, I noticed a hard white ring on my foreskin which turned out to be Lichen Sclerosis which was diagnosed a week later. This is why I believe that uncomfortable sex in addition to stress was a trigger in developing Lichen Sclerosus. I would also like to add that my Vitamin D levels were astonishing low at the time. According to many studies published online as well as in many journals, it suggests that low levels of vitamin D is a contributing factor in developing Lichen Sclerosus or any autoimmune disease. My Vitamin D3 test levels back then [in 2011] was10 nmol/L.

    Would also like to add that other than my severe lack of Vitamin D, everything else was in normal levels. I also don’t have any history of diseases running in my family.

    At present (26th of Feb 2013) my LS has significantly decreased (to almost cured) however it is still present. I will post some pics soon:

  98. Chris

    Hi all, I’m Chris. I live in Sydney, but am originally from the UK. I am 35-years-old and was recently ‘officially’ diagnosed with lichen sclerosus.

    I was circumcised back in 2004 following phimosis (tightening) of the foreskin. Since then I have had gradually thinning skin on the tip of my penis, lots of blood blisters and related scarring, and now narrowing of the urethra.

    I am due to have a meatotomy on Friday (15/3/13) to widen the urethra, and am quite frankly scared! I know a meatotomy is not as serious as being circumcised, but my worry is that this condition has persisted for almost 10 years.

    I really value this forum and being able to read about other peoples experiences and advice and hope i can help contribute.

    I would be very keen to hear from any guys on here that have effectively reversed the scarring on their glans and how they did it. I have recently started using Emu Oil four times a day after reading how it helped some people.

    My dermatologist has told me that it can’t be reversed and that I now must ‘manage’ this condition. For example with lubricants, eating a healthy diet etc.

    I am willing to try all of those things but I am hopeful that with prolonged use the emu oil may help regenerate some of the skin. I have also heard of a cream called ‘Perrins cream complete’ that i’m planning to try, if anyone has experience of this I’d love to hear about it.

    I am scared that my sex life is going to be permanently affected, and my biggest fear is the dermatologist’s warning that the condition is ‘pre-cancerous’, at 35-years-old and having just welcomed my first baby into the world this terrifies me and has pulled my life into sharp focus.

    I’m staying positive (just) but would welcome any advice/support!

    Chris

  99. pete

    Hi Phil, where in uk? are you, ? When I met Dr.C at the first conference for l.s. in 2010 we discussed stem cell and he thought I may be too far gone for it to help. If I had the money [2000 euro a go] I would try 3-5 treatments if he would consider it. But alas unless I win lottery no chance. I am honest and show partners once intimacy is likely, explaining condition and giving web site details, this and the 2 facebook ones, as a female, they can get more info on them.
    Explain how it can tear, split, hurt hence plenty of oil.
    As for spread of white physmosis, it never stops, well at least with me, now covers whole of glans head, along frenum, and a few patches now on shaft below frenum.
    II`m 60 so all I hope is I can last out another 20-30 years before it spreads to urethea, hence my regime. Neen really busy lately so I have dropped from 2 to 1 massage a day, sometimes not even that, and my foreskin is A BIT TIGHTER.
    I wish more men would come forward and speak up. I only come on here every few weeks now but on both facebook sites every day. It is only females chatting but at least they experiment with vitamins, iols, treatments etc and talk, which at least does help in as much as you dont feel quite so alone with it. I`m Pete on there as well , nothing to hide and most know me well by now, Its good to have a good laugh about it also.
    Will keep coming back here for the mens sake, You can also private message on facebook for more intimate messages / questions. which you dont want the whole world to see. Lichen Sclerosis and Lichen Sclerosis-LS
    good luck
    Pete.
    good luck,

  100. Rick

    Hi All,

    I havent been on lately as sometimes there is not a lot of new messages here sometimes. I hope you all are doing well with your LS/BXO. I saw the urologist again and he is pleased with my progress. The whiteness inside the opening of my glans has disappeared. I do have scarring inside the urethra in a few spots that I cannot do anything with, but I have been dealing with it. I am concerned that if I miss a day with inserting the q-tip, my urethra is closing up again. This cannot be helped as it comes with what I am dealing with, but I wonder about the long term effects of this. I do know that stress and not getting enough sleep do aggravate my BXO. I am just taking it day by day for now. I wish you all continued success.

    Rick.

  101. AJ

    Hi
    I spoke on here about 1 year and a half ago and mentioned that i had started taking msm and knowone hard heard of it well i wish i hadnt stopped taking it to be honest

    About a year ago i started taking MSM or METHYLSULFONYLMETHANE which really really helped my condition i stopped taking it about 4 months ago and i have just started to have flair ups again.

    Im going to start taking it again it makes you quite tired for first couple of weeks but fine after that, the improvements after being on it for a month with controlling it with steroid cream then just taking MSM alone was great the skin colour on penis returned to normal.

    I have a link to website that contains an artical about the use of this product and people that suffer from other skin conditions im sharing this because it mentions the fact that long term use showed almost complete recovery in the 5 patients with Litchen Sclerosus which has restored my belief that i have found something that might work for others on here.

    Ive been quite down recently because of it reoccuring but i went 5 months without so definitely going to start my treatment again but this time long term

    Hope some of you find this useful i do go on a bit lol

    http://health.groups.yahoo.com/group/Granuloma_Annulare/message/5660

  102. Wayne

    Hi, I have read the whole of this forum before writing in. I am a 43 year old and approx 6 months ago noticed the odd red patch, followed by white patch on my penis head, this has all cleared up on its own but my foreskin has the white ring all around it.

    When I pull my foreskin back it is very tight ( head of penis looks fine). Been to doctors who just said tight foreskin needs circumcision.

    Read this site and think I need to see either a dermatologist or urologist.

    I am in the uk (east midlands) and do not know which way to turn, ask doc for cream, go to gum clinic for referral, go to docs for referral to derm or urologist ?

    Sex is fine with lots of lube but do not want this to get worse.

    Any help and/or advice.

    Thanks, Wayne

    1. AJ

      Depends on how much your foreskin is scarred Wayne, if its tight with little scarring it may well respond to steroid cream alone and i think this should always be your first choice.

      Mine also got tight but had plenty of scarring luckily for me i had a caring doctor that gave me 2 options

      Option 1 was an operation to loosen the foreskin

      Option 2 was circumcision

      I went with option 1 the op to loosen i cant remember the correct name for it, but it worked for me and you would never know i had anything done. A few months later i had the problems with the patches on the head of penis.

      The only downside of the first option is that my doctor told me there is no guarantee it wont return luckily for me it hasnt.

      1. AJ

        Option 1 was called a preputioplasty and it worked wonders they also gave me steroid cream after healing incase it reocurred so if you dont want to loose your foreskin ask about this procedure and then keep cream at hand incase it reoccures so you can catch it early

        1. Wayne

          Hi,
          Thanks for the reply. I have maybe 1.5 to 2cm of foreskin that is white (normally brown) and it is this that is tight.
          I can fully retract but use lube during sex.

          I will go for cream first, got docs appointment this week so will ask for some prior to visit to dermatologist.

          Did you go to dermatologist or urologist?

          If I have to go down the route of operation I would go for as little off as possible!

          Thanks.

          1. AJ

            Yes i understand, it was dermatolagist i went to just to confirm what my doctor had thought and then they gave me cream to put on religiously for 8 weeks but unforunatly i couldnt retract mine and there was to much scarring the sooner you get the steroid cream the better.

            And like you i wanted as little as possible done thats why i chose option one, just make a note of what its called if you end up referred to a surgeon because a lot will try and fob you off with circumcision being the only option when its not.

            Good luck i think the cream should do the trick fingers crossed you should be able to get prescription from standard doctor if not a dermatolagist should be fine

        2. Wayne

          Hi, my doctor was useless, never heard of Lichen or BXO, still got a referral to urologist in one month, no cream!
          May go private to speed things up.
          Thanks for advice.

      2. CM

        Hi AJ

        Thanks for your posts.
        I’ve followed them since 2012, but then you didn’t post anything for a year.
        So I was wondering if you are the same AJ that was trying MSM?

        I just wanted to know what happened next for you?
        Because it looked you were having great results with MSM, and now
        I read you had to do a preputioplasty.

        Please, could you make a short synopsis of your medical path from
        when you realized you had BXO until now?
        It will be very helpful for me and I’m sure to many men here.

        Thanks!

  103. scott

    I have posted on here a few times. I am one of the unlucky ones, 24 years old with the condition on my glans (I am circumsised and have white scarring which will never heal). The problem I have is when ever my glans touches anything, it irritates it causing pain. Sex therefore is impossible because any stimulation causes pain and therefore the erection does not sustain. Long shot but wondering if any guys had similar experiences and found any temporary solution for living daily and during sex.

    Rgds,
    S.

    1. Wayne

      Hi Scott,
      I am sorry to hear of your problems. I have never had similar issues so cannot really offer any advice other than, if not already, exploit every doctor, consultant that you can.

      If one doctor says they cannot offer any help, move on to another.

      If you are in the uk, go to different gp’s in your surgery, ask for different referrals.

      As a side note, you can get thicker condoms that may reduce sensitivity?

      Oral sex is generally softer (unless they use teeth !!)

      Ever tried foreskin recovery? Do not need it myself but a mate has done it following circumcision at a young age and now has a foreskin again.

      Well, sorry I cannot be of more help. Good luck!

  104. Dawson

    Glad to have found this site. Official diagnosis of bxo/ls has been for only under 6 mos. I find it very difficult accepting the diagnosis. My glans have become paler and mostly white, without ulcerating spots however. I have just undergone partial glans resurfacing for the 2nd time.

    My main concerns are why does the whitening take place? Would stemcell therapy bring back “pink pigment”?

    I cry whenever I feel the need to do so. I feel cheated in a lot of ways. I used to be a tough guy. Not much got me down but this condition is very emotionally draining for me. I will probably never have a mesningful relationship due to the embarasment and issues around intimacy.

    All help and suggestions are appreciated.

  105. dave L

    I was diagnosed with lichen sclerosis on my glans when I was 21. it gradualy spread to the inside of the forskin and this made retracting it increasingly difficult.. i was prescribed all types of creams but to be honest they made no difference and I opted for a circumcision when I was 26 and have no regrets. The disease stopped on the glans and has not reoccured. i know how many people worry about a circumcision but it was actually a painless procedure, healed up over a few weeks. My advice is have a circumcision and the whole problem goes away and you can get on with life.

    1. frank picton

      I have just been told I have bxo and going for a circumcision, I would like to know after removing foreskin will it stay a bay aged 56

      Thank you frank

  106. p mutu

    hello , i have been suffering fm LC for 1 year , i circumcised my penis because of lc ,in biopsy its conformed as lc ,doctor told its benign nothing to worry , even after i have white patch in the junction between penis head and shaft .. there i am having pricking sensation over the area . i consulted dermatologist and std specialist , he told me its due to friction so apply some coconut oil ans tacrolimus liquid .. after some days i relieved my symptoms much . but it persisting often and the white patch is spreading , i am totally fed up of my life , i am 23 yrs old un married , , now i am afraid of my sexual life , totally depressed , now i decided not to marry anyone in future , pz suggest any advise or any medication to stop spreading of the white patch

  107. dawson

    I was only advised of having bxo since Jan 2013. I underwent circumcision at 26 for phimosis but looking back and knowing more I have more reason to believe it was the onset of bxo. After circumcision I noticed hyper pigmented areas (brown/dark) on my glans as well as white areas and more noticeably I had shaft skin adherence to my glans. I seen well over 10 specialists seeking treatment and answers for what went wrong during circ. and if any of this was reversible. Finally in July 2012 I met a Dr in the US who performed a glans/penile full thickness skin graft. This was tragic. I later learned through my own research and meeting with other specialists that for such a region only a split thickness graft should have been used. It led to difficulty urinating, lack of sensation when needing to urinate, and pain both being flaccid and erect.

  108. Kesh

    Hiya there.

    I have been diagnosed with BXO last year and have seen my urologist twice since then. There are number of white patches on the glans. Occasionally symptomatic and i can retract almost fully. Symptoms are mainly burning and itching. Urologist said i dont need a circumscion as its rarely symptomatic and nothing we are actually achieving in terms of relief after surgery – he said cosmetically it may be worse after surgery. I have started using dermovate ointment and symptoms are much better now – very rarely get it now and i hope the disease gets into remission.

    Pete/Admin, can you share with us on your experience on using clobetasol and how long it took initially before you saw improvement in symptoms and how often do you all use the steroids now?

  109. Ben

    Hi dave

    Please can you tell me did all the discolouration on the penis gland go back to normal after the circumcision?because my penis head is almost completly white now. Many thanks.

  110. Terry

    Hi ,

    I am 47 and I was circumcised when I was at primary school age for what I can only suspect was the onset of Lichen Sclerosis.
    I was having trouble with going to the toilet and tight foreskin. My parents never really spoke about it and haven’t since. (the dark ages!)
    I seemed to have had no problems other than the scarring always looked visually ugly to me.
    Throughout my late teens and twenties I had noticed a redness in the scarring which appeared inflamed at times particularly after friction. I didn’t think anything of it as it never caused any pain or itching.
    However, last year I noticed the redness more pronounced and the skin scaly and went to my G.P who referred me to a dermatologist. She was unsure at first and initially prescribed a steroid cream, emollient and dermol.
    On my second visit she thought the steroid cream was making no difference and she seemed to think the Lichen Sclerosis was ‘ burned out’. I continue to use the Dermol and emollient and the skin seems better in condition although still appears visually red and scaly. I have never had pain or itching.
    My own research has suggested that it is rare in circumcised men.. is this true? or has it re-appeared? Also what is meant by ‘burned out’ Lichen Sclerosis ?
    I was also recommended a ‘Yes’ lubricant which is great but also very expensive!
    Appreciate any advice.

    Terry

    1. Rick

      Terry,

      I have found that it is more rare in circumsized men as well, I being one of them. My LS/BXO mainly caused scarring in my urethra, which in turn led to the almost complete closing of the opening in my glans, which had to be surgically opened again. The scarring in the urethra causes the urethra to “dry out” so to speak and that causes it to constrict. I have to make sure my urethra stays open so the opening in my glans does not close again. I have never heard of “burned out LS” myself. Is it impossible for you to use no lubricant? I have noticed that since I have been diagnosed that all of the lubricants I have tried make me very red and raw within minutes, although I have never tried “yes” myself. I hear nothing but good about that product. I know this is kind of gross but have you tried saliva “spit”, as a lubricant?

      Rick.

  111. Dave l

    Hi Ben, no the affected part of the glans did not fully return to normal but it did fade and is not very noticeable. The important thing is that circumcision stopped the progress of the disease as soon as my for skin was removed. I can only go by my own experience but the sooner you have a circumcision the sooner the disease stops.

    1. Rob

      Hi Dave,

      Did you have negative affects from the circumcision? Was it a ‘tight’ or ‘lose’ cut?

      There seems to be a lot of stuff on the internet regards circumcision. Some people say it’s the best thing they ever done, some say it’s been the worse. Some people (adults) do it, who don’t have BXO or foreskin problems, because the prefer the look….my concern and I guess one for a lot of people is…does it make the old boy look smaller? You must lose some girth right?

      I have mild BXO which seemed to have cleared up on the foreskin…but is now spreading to the glans. Just slight but definite fading around the frenulum and underside of glans. I am 40 years old and very fit and healthy so finding the whole thing very bizarre. I am thinking about just getting the chop…just to get it sorted. However worried about above. I don’t want to replace a disease (which might be manageable with steroid creams) with having a smaller nob….it’s a bid decision.

      Thanks for advice.

      1. George

        I did it as an adult a year ago. Best decision of my life. I love the look, no more skin discoloration(it was only an inche wide on the shaft not the glans) they did a high semi lose. But when I’m erected its a completely cut penis. Do it ASAP if you doctor thinks is the best.

  112. Robert

    Hello Guys,

    I am 40 years old. I came across this site and I would like to impart some useful information to those that have just started on the BXO journey. There is a shocking lack of knowledge out there and hopefully the following will give you some guidance and save you some time, worry, stress, paranoia etc . My particular experience has been a two year journey culminating in a trip one month ago, to see at the Birmingham Prostate clinic:
    Before I start I might add I am a totally normal healthy, rugby, football playing bloke that has spent the last 20 + happily playing with my penis, masturbating having sex etc.

    – Summer 2011 – Tear in frenulum appeared. Thought nothing of it. Didn’t go away, didn’t want to heal, continued to masturbate.
    – Late 2011 – Slight tightness of foreskin. Thought nothing of it. Continued to masturbate. Noticed red thin tears appearing on the foreskin and also whitening of skin on tip of foreskin. Also a small scaly scab (very small) by frenulum. I still didn’t suspect anything other than a bit of thrush from my other half. So I blamed her!
    – Early 2012 – Symptoms above not going, scaring appearing from tears and also the appearance of a white ring….which was slightly scabby. Suspected something not right, began the process of many hours of researching on the internet/forums etc. Stumbled across BXO pictures….looked like what I had..started to worry/get paranoid…lots of staring at my penis. Booked appointment with GP.
    – Spring 2012 – Went to see GP. Usual incompetence…thought it was a thrush infection that caused damage. Recommended light steroid cream anyway…I think this is the standard procedure for anything involving skin problems on the penis or elsewhere on the body. Applied cream and yes symptoms did improve. However I was convinced I had an ‘incurable, progressive disease’ and was worrying myself sick about it. So I went back to GP and insisted on a referral to a Derm consultant.

    – Summer 2012 – Scabs gone and scaring fading and frenulum tear healing. Went to meet Derm consultant. He whipped off my pants and within 20 seconds said yes I had ‘mild changes of BXO’. However he told me not to worry, keep on the cream and in fact go up to the stronger Dermovate to really nuke it for a couple of weeks. Told me not to worry about it and there are plenty of worse things out there etc. No mention of circumcision. I felt much better and applied new cream for a couple of weeks. I can say that after a few months things really did improve and I can also say it does take a few months for scarring to start to fade. Steriod cream is not a quick fix. It seems to have an affect after you have stopped the cream. You also need to be doing lots of foreskin stretching, The two things seem to work together to reduce tightness and reduce whiteness on foreskin. I still have a slight white scar/ring on foreskin, however two years on it has nearly gone.

    – Jan 2013 – Thinking I was cured. I looked down one morning in the shower and noticed that there was light spot on my actual glans. Very light, very small but definite skin lightening around my frenulum. This created a new period of intense penis staring, paranoia and anxiety. So I got to work on the internet again and came across Mr Anderson above. I wanted to get to the bottom of this. Was this thing going to get worse and was my penis going to end up like a horror show. Went back to GP and insisted on a referral. I resisted but I insisted.

    – Summer 2013 (after several cancellations do to work commitment etc) – Drove to hospital and met doctor. Again there was no messing about, I whipped off my trousers he had a quick look at the old boy and within 5 – 10 seconds he just matter of factly said yes you have BXO. Even though in my mind the scarring had mainly gone and white spots on glans not that bad he immediately spotted all the symptoms. He told me that quite simply if I had gone to see him when the symptoms first appeared he would have recommended a circumcision, period. He said that a small % of people will naturally reverse and be cured of the disease but the majority will need a C. As it happens as my symptoms have now mainly gone, he said just to keep an eye on things but if they come back then I am to book in an appointment for the big C. He told me that the infection is caused by urine getting into the moist fold under the foreskins and causing an infection.

    CONCLUSION/NEXT ACTIONS:

    I am going to adopt a wait and see approach for 3 months. I am holding out hope I will be one of the few that will get completely cured. I am going to make sure that every time I go for a piss, I will pull back my foreskin and dab with a bit of tissue and just be ultra, ultra clean. I am going to see if that makes a difference. In other words replicate having a C by keeping the penis clean from things like urine. The main concern for me is the glans…I don’t want the lightening of the skin to spread…at the moment it is contained to a tiny area. The scarring on the foreskin has now pretty much gone as mentioned above.

    If it doesn’t go from my glans or if it makes a reappearance on my foreskin I am going for the chop and that’s it. I shall report back in 3 months.

    So I think don’t delay insist on seeing a derm consultant as a minimum if you have any worries.

    I hope this helps!

    Rob

  113. Rob

    Chaps,

    40 years old. I have mild changes of LS/BXO. Similar story of not knowing what it is was , followed by trips to GP, misdiagnosis etc, etc. In the end I went to see a Derm who recommended Betnovate, which was followed by Dermovate. The symptoms totally seemed to clear up after a while on the foreskin. However I have started to notice a very slight but definite lightening of skin on glans. This is after a period of two years.

    QUESTION: Will circumcision actually prevent these symptoms on the glans from getting worse? It is the most strange disease to have. I don’t understand how a piece of skin on the end of my penis, that I have happily had for 40 years can cause this problem. Just doesn’t make sense.

    So my concern now is the glans. If it carries on (only faint at the moment) I am going for the chop and that’s it. Going to give it 3 more months.

    Rob

  114. Rick

    Hello all,

    Hope everybody has been doing good and in good health. My urologist is satisfied with how I am coming along. There are no more signs on the outside that I have LS/BXO. He says the color is good and I have been doing ok. I asked about the long term effects of using the Clobetesol, and I need not worry as the amount on the end of the Q-tip is not enough to cause problems. I asked about about treating every two days instead of every day. My body is reacting nicely to the new schedule. I do know I am not cured completely, as if I do not insert the Q-tip with Clobetesol at least once within a three or four day period, that my urethra seems to be constricting and closing again. So I must stay on the Clobetesol and do the treatments at a minimum of twice a week. If I can maintain life like this, it will only be a minor inconvenience at this point. Because of the scarring inside my urethra, I will most likely have to continue sitting down to urinate. It is hit or miss. Sometimes I urinate in a steady stream, and other times, I urinate in every direction other than the toilet. This is hard when I am in public and have to use a urinal, but I accept this as what I have to live with and thats it. It has been a year since I have been diagnosed and treating this. The only difference in my life now vs. when I was “healthy”, is the sitting down to urinate, and I sometimes have a stinging sensation in my penis from time to time.I do notice I have lost a small amount of sensitivity in my glans. I can still function normally sexually, but when I overdo it, I feel some burning and more severe stinging for a while. So I accept the fact that I cannot act like I am 18 years old again and just try to do the right thing for my health. I just take everyday as it comes. That’s all for now.

    Rick.

  115. Miles

    Hi all, hope the following “story so far” helps. 40 year old male in the UK.

    I’d had a longstanding tight foreskin which was easy to retract except when erect. A pretty dismissive urologist told me about 15 years ago that the only solution was circumcision – steroid creams were no good, he said. Not liking that idea, I just left it. But about 5 yrs ago I developed a milky white discharge which appeared under my foreskin every morning. No pain, or other redness or inflammation. Great sex life. No white spots either, which seems to be the key characteristic of LS.

    Suspecting a sexually transmitted infection I went to a GUM clinic, but tests produced a negative result on STIs. I was initially prescribed Daktacort steroid cream as this has an anti-fungal ingredient – a fungal infection was expected. No real effect. A swab of the inside of my urethra resulted in the (rather pointless!) diagnosis of “non-specific urethritis” (NSU) – ie an inflamed urethra for which no particular cause is clear.

    I persisted and eventually saw a GUM consultant who suspected LS/BXO. She referred me to another GUM consultant who agreed, and prescribed Dermovate cream (clobetasol propionate) on a declining dosage, ie daily for 1 month, every second day for 1 month, twice a week for 1 month. This was effective very quickly in clearing up the liquid discharge, but no real effect on my skin or foreskin. And shortly after stopping the use of Dermovate the symptoms returned.

    This led to an onward referral to a dermatologist who was more doubtful about the diagnosis and wants to do a “punch biopsy” under local anaesthetic. I am pretty doubtful about the diagnosis too given that not one of these consultants has yet been able to explain what the discharge is and why it is an indicator of LS (other than it might indicate inflammation). The biopsy has yet to come, but in the meantime an extensive “patch test” (dobs of cream taped to your back for a few days) has ruled out allergies.

    So, from my experience, and despite having seen 3 consultants all of whom were familiar with LS, the advice I would give would be:

    1. Only senior clinicians seem able to imagine the possibility of LS, so be persistent and ask to be referred upwards for them to consider it if you suspect it.

    2. Conversely, do not allow “groupthink” among clinicians to conclude that it is LS when it might not be. I think my consultants might simply have been being polite to each other at my expense. Hence the biopsy to let the scientific evidence speak!

    3. Do not allow embarrassment to stop you from asking the questions you want to ask. For example, I realised when I got home that the consultant who’d just prescribed Dermovate hadn’t actually told me where to spread it! Outside the foreskin, inside, just on the frenulum, everywhere, or what? How much to use?

    4. Learn the anatomical terms. The more precise you can be in describing the problem, the more precise they will be.

    5. Have huge sympathy for those suffering from severe phimosis etc, but don’t panic if your symptoms are mild, as mine are. Steroids can manage it.

  116. arf

    Hi, im 49 yrs, I’ve just received my biopsy results, Lichen Sclerosus under my foreskin.It was painfull when erect having sex about 4 mnths ago, had gone away. I noticed it returned about 2.5 mnths ago, really red but no pain, no white spots. Went to the STD clinic gave me some anti-fugal cream, applied it for about 3 weeks only minor improvement, went to my Gp, started me on kenacomb ointment, was starting to clear had cleared all happy, kept using the ointment about 2 weeks went by red spots appeared on 1 side then it just flared rite up, only painful stinging when washing with water, went back to Gp, gave me fucidin, syalic acid, clamydia anitbiotics, no improvement, asked for a referral for specialist, dermatologist, he gave me the biopsy, prescribed Betamethasone dipropionate, apply twice per day for a month…….. I had no tight foreskin, no pain only on second outbreak and only when washing, seeing doc November, reading the blogs is scaring the shit out of me,il keep updating, see how it goes, thanks…

    1. pete

      Hi guys, been a while since I have been on here. Its almost 30 years now and though my end is almost white all over I can still function very well. I resisted the big C at all costs as I believe and have spoken to others that the scar tissue afterwards is prone to more attacks of L.S. So I just stretch foreskin as much as possible, plenty of oils, I mix vitamin e oil with coconut oil and emu oil. Once daily application at least. Clob cream as and when I feel it necessary. AND most importantly live life to the full, being positive all the time, as hard as that might be at times. Good healthy diet, vitamin e oil, omega 3 oils vitamin d, daily.
      Good luck.
      Pete.

  117. james

    Hi everyone

    So i too have been diagnosed with LS, not sure if it’s the correct diagnosis though.

    First thought it may have been a bacterial…got a strong antibiotic treatment with no result. Then the doctor thought it may have been fungal…did a double length course of antifungals tablets…no result.

    I’m uncircumsized. Since mid twenties(now 33) every time i urinate there was a drop or two of urine left on the tip of my penis, coming out after johnny has been put back in my trousers. My foreskin is such that about 25% of my penis is exposed IE it does not cover the entire glans. It’s always been this way.

    I have never had any red marks, lumps, bumps, blisters or any of that stuff luckily. Also no trouble retracting foreskin. What i think has happened is urine damage to the penis head. The part of my penis under the foreskin has gone white, for a few years now. The exposed part is still the normal color.

    The plaques are not raised nor itchy. But my problem : It’s rather unsightly…obviously could be mistaken for an STD. Have been to the dermatologist and he prescribed Dermovate(steroid cream thingy), not really paying attention when i told him i had none of the other symptoms of LS, just the scarring and it’s not really that bad. He did say that the cream would break down the collagen in the scar tissue.

    I don’t think i have LS, but the scar tissue/plaques are very similar or actually the same.

    My questions?

    1) Will the steroid cream take it away completely and if so how long should it take to start seeing results…i know everyone is different but a general answer will do just fine.

    2) If the steroid cream is a pointless venture, does anyone know of other remedies that work for scar tissue reduction on the glans, no i don’t wanna fly to Italy unless i have to?

    I really want a normal looking penis, like everyone else on here.

    I’ve found a few sites with natural remedies etc but i don’t wanna be applying random ointments to my little friend unless someone out there has had some positive results with it.

    Thanks in advance guys and good luck to all of you on here.

    Regards
    James

  118. Anon

    I’m a 29 year old male. Had the diagnosis about 2 years ago I guess. I’ve got great healthcare on the NHS, but the consultant wants me to have a circumcision. I don’t think it will help.

    I’ve had a few social issues in my life, I find it hard to meet women. Never had a girlfriend. At 27 I finally got into a relationship, only the second in my life but was unable to have sex on a regular basis due to the pain from LS so she dumped my ass. This is very upsetting and obviously I cannot talk about it to anyone.

    I treat the condition with steroid creams. It works fine for normal life like walking around and sleeping, by that I mean without a sex life. So if I stay single I can cope. i don’t know why I’m writing but the condition has convinced me that I will never be in another relationship in my life. I don’t really care about the physical symptoms per se, but the impact it’s had on my personal life has been absolutely devastating. Since the diagnosis I’ve given up hope on relationships and spend mostly every weekend self medicating with alcohol and dream of a normal life.

    I wish there was a cure. What terrifies me the most is that I’m 29 and have the rest of my life to live. What the hell is it going to be like when I’m 60? It already hurts when I move in bed or run!

  119. Nick

    To be… outside the norm. To be… outside the gene pool. To be… different. Less. Outcast. Alone. To carry the devastation of this disease alone is a torment I have found no one yet in my life able to relate to, let alone understand. I can tell close friends and family, and they are temporarily sympathetic to a point, but then they go on about their normal lives as if my suffering was somehow lessened by their convenient forgetfulness. I take care of them, helping whenever and wherever I can, acting as if nothing was wrong. I have been dealing with BXO for almost 30 years now, and if I really think about it the disease has not just detoured my life… it has dominated it. I walk around like a normal human, laughing and carrying on as if nothing was wrong because it’s easier than the truth. Rather, it was easier. Nothing is easy in my life anymore. I can blame being single on being fat. I can blame being alone on my moodiness and depression. I can assign any meaning or excuse to my behavior and/or attitudes in life on anything I want to, but when the 100% truth is told this disease has destroyed any semblance of a normal life, or whatever that’s supposed to be.

    Physically = the growing white patches turn normal skin into non-elastic, tearing, itching matter. To make matters worse my penis is also concealed. I suffer from severe phimosis; paraphimosis I believe it’s called. I was circumcised as a baby like most other Midwest American white males were in 1979, but as far as I can tell the doctor was a butcher and I had complications all through my early years because of his shaky scalpel. Eventually those complications forced me to sit down to pee, something I’ve been forced to do since around age 7 or 8. My alcoholic chain-smoking mentally-abusive father was less than sympathetic to my pain, only begrudgingly agreeing to my second circumcision at the age of 13. I have had 2 other circumcisions since then in an attempt to correct the problem, but the most relief I’ve ever seen is a 2 week period of elation I could never adequately describe to anyone. All too soon after the last operation things were back to “normal.” I saw a physician a few years ago, a urologist who had only seen half a dozen or so cases of LS/BXO in his 30+ year career, and mine was “by far the worst he had ever seen.” He asked another doctor to come into the exam room and take a look, a female doctor from Brazil. It was so bad in fact he asked if I would be willing to let a few students come in to see, and having shouldered the embarrassment of the beautiful Brazilian woman I thought it could get no worse; I was wrong. 5 other students came into the room, all women, all devastatingly beautiful. At this point I am reduced to excruciating pain whenever I urinate, and if I don’t masturbate once or twice a day every day I am awoken at night by the most excruciating pain I have ever felt in the form of uncontrollable nocturnal erections. Zero sexual function with a partner, zero penetration. I’m no Steve Carell, but I am a 34 year old virgin.

    Mentally = as if these few paragraphs could ever adequately describe the mental torment that is this disease. I can accept being cast out for being fat, for being too friendly, too eager, for being the only swan in a world full of ducklings. I can handle rejection fairly well at this old age of 34 – I was ALWAYS the fat kid. I’ve always been overlooked by all women except those needing a crying shoulder/brother/friend type. I’ve been in so many friend zones for so long I should have passport stickers by the thousands racked up by now. I was once married to… an abusive, unsympathetic woman who could not understand that stress and climate change are the giant aggravators of this nightmarish condition, and I moved across country to be with her in a cold New England climate from the Midwest and then back to the Midwest with her again. The marriage, mercifully, didn’t last long. She needed something I literally could not give her, and the surgery that was supposed to cure everything only made things worse. At the end I was working 3 jobs and she was punching me closed-fist in the face on New Year’s Day, so I said even with the BXO bullshit I must be worth more than that, so my 30th birthday present was a finalized divorce. I have dated a couple of women in the past 4 years, but none that could tolerate my condition with any semblance of patience and/or understanding. The desert of loneliness of hard enough to walk though, trudging step by step towards the next mirage of a lonely miracle suffering like me, only to look down at the anchor of BXO dragging me down further into the quicksands of hopeless despair.

    Even now I can’t even type this message out without an interruption from yet another family member tapping me on the shoulder for food money. It’s as if I was saddled with this unconquerable burden for the purpose of bearing it alone no matter what else is going on in the world with everyone else in some sort of sick cosmic experiment in frustration and futility. I have considered with great frequency the ultimate solution of castration. It would forever seal my fate and I could live the rest of my life concentrating on the other supposed ultimate purpose of humanity – the accumulation of as much wealth as possible before I die and leave it to a family I don’t have. I have taken out an accidental death and dismemberment insurance policy through my employer in the hopes that an errant drunk driver or some other joke of fate takes me out and provides the extended family I have now with at least a little bit of money to replace everything I do for them.

    Why am I posting here? Maybe to offer my fellow sufferers the knowledge that they are not alone and that yes, there is someone out there who has it worse than they do, and it’s probably me. I have lost all hope of living any whisper of a normal life. I have lost all hope in the medical community and its butchers and their bloody knives. I have lost all hope in any loving deity that only wants what’s best for me if only I would give everything I am to him/her/it. My only hope is that this twelve-hundred words or so of regurgitated desperation can convince someone reluctant to seek help for a questionable spot on their “manhood” to find a doctor they trust and get some help NOW. I have a good heart – but nearly 3 decades of suffering have finally taken their toll and it’s all I can do to keep from Thelma & Louise-ing my dream car into the local river I drive next to every day to and from a good job that will not cure me any more than anything/anyone else in this life will. Don’t wait! I wouldn’t wish this putrid existence on my worst enemy.

  120. Fred

    Hi there guys

    1) Has anyone been treated with antibiotics?

    2) Is anyone driving this site able to make this section (mens only) a bit more organised into a forum setup, so that it’s not one long page?

    3) Has anyone been treated with Tacrolimus, used with Honokiol?

  121. Guy in CA

    Hi all and wow finally a place for a discussion about BXO/LS . I did not even know the terminology had changed and looking for information on BXO was difficult unless you had paid subscriptions to journals more aimed at the medical community.

    I am 50 and have had this condition at least 27 years and probably longer. I had one situation of phimosis at 23 and I went to the hospital , gave me a local and corrected but it did split the skin on my foreskin. This has not reoccurred for me but I had surgery to clear my urethral constriction about 8 years ago. Urologist gave me betamethasone and it does control it to a degree.

    I have been treated with anti fungal , done STD tests more than a few times , always negative but funny how even many medical professionals assume an STD is the cause of what they see and are not aware of the condition. Finally got some treatment with corticosteriods and its treatment not cure. Be interested to see if the stem cell treatments become more widely available and within reach in terms of price if not covered by a health plan. Be nice if someone offered the treatment in Canada where I live as it would likely be fully or partially covered.

    I accept now this is a life long condition. I also know this is not something caused by something I did but a condition within my body and its my immune system. I really got back to looking at what news things might be out on the Internet as a small patch of psoriasis cropped up on one of my fingers out of nowhere. While not quite the same thing, treatment is similar , so I ended up looking around again on the Internet and found this site via a woman’s site on LS.

    To say this has affected me emotionally and psychologically would kind of be an understatement. The condition was misdiagnosed a long time and while I have had partners , even was married and fathered twins , its not easy to be intimate at times, with a feeling of self consciousness about the appearance of your penis especially when a flare up is occurring. Moving toward intimacy with anyone has been difficult. I went as far as to cut off plaques when this whole thing started which is not totally not recommended but that was 27 plus years ago and I knew very little and was deeply ashamed. Its not an easy subject for me to discuss still to be honest.

    I would say I am lucky in that everything works and I do not experience pain. My foreskin retracts normally and generally my physical health is good. I have suffered depression for a long time but its more than just this particular situation with LS involved and depression is very common on my dad’s side of the family.

    I kind of expect , even if using a sound , I will likely face urethral problems down the road but I am fine with the surgery and there is no serious progression at this time. Sounds are a temporary treatment it seems ( or was the treatment before steroidal treatments and advancements in surgical procedures). Last time I waited till I was at nearly completely constricted due to a lot of embarrassment over the situation. I certainly won’t wait this time if there is any issue.

    Its been good to read what others have experienced and some of what has worked and not worked for them. Its been a lonely feeling and thinking I was some kind of rare case of what appears to be more common than I ever thought and simply hidden due to the nature of it being a skin condition of the penis. Years of wondering what I had done , was doing or what was causing this was difficult but once it was clear , there were treatment options and I knew more I began to accept things as they are which was actually a huge relief.

    Glad this forum was started and many thanks to the Admin and ladies for getting this forum together. I was so struck but what I have read already and hope we can support each other as best one can across the Internet.

    1. Stevo

      Hi Guy. Yeah I can fully understand the cutting off plaques part. I even bought a plumice stone and eroded them off at one point. Trouble was then that it was that sore I couldn’t get hard!

      I was only diagnosed today and as I told the specialist “I don’t care what it takes I will do it, I just want pain free erections back and for my penis to not look like I dipped it in milk!”

      1. Gallo

        I now have had 8 doses (1 every other week) of Humira® for my BXO. The first 5 injections were intralesional; the last 3 have been intramuscular.
        The lesions on the glans penis began to clear immediately after the first injection and substantially had disappeared after 10 weeks.
        Based on the relative ease with which I can pass a catheter, I believe the urethral strictures also substantially have disappeared.
        My voiding has improved somewhat; however, not to the extent that I would like.

  122. pete

    Hi Guys and thanks for posting ….all I can say is read my posts, be positive try and reduce stress and at moment go with the flow. Steroid creams are really all we have unless you can afford stem treatment, and that is really in its infancy with males, even females only 12 years or so, so we don’t know long term effects yet. There is hope for all in relationships, sex doesent have to be part of it. Though its nice. Keep moisturising it, keep skin flexible and don’t let it dry out, keep massaging. keep blood flowing. it helps remove toxins.
    accept it and live with it, fighting it, etc causes more stress.
    Pete.

  123. George

    Hello everyone,

    I just wanted to shared my experience. I am 27, I suffered this since I was 15 and started to masturbate. I was uncut and im didn’t suffer any phimosis, I was normal as a function uncut man. However 3 to 4 times a year I had this irritation and sometimes cracking on my foreskin that started to cause me hypopigmentation and light scarring. I had a normal sex life since 20, but the color change and this cracking irritating events started to increase, they were annoying and I didn’t want to live like that. At 23 I went to see a doctor, he told me it was just a skin discoloration complete normal and the dryness needed to be control with a mosturizer. 3 years later nothing change and I went to see another doctor who told me it could be BXO and a skin test was needed and circumsicion was the best alternative cause I was in a medium stage of this chronical disease. He told me this could get worse over time if not controlled, it could affect you urine track and the glans. I decided to do it. I got circumsiced a year ago as an adult and sexually active. The surgery was simple painless and very quick recovery. After 1 month I could start masturbanting and after 3 I was having sex normally. There were no big changes (pleasure or sensitivity) and everything looks way better. I love my penis now. I haven’t had any of the episodes again and as far as skin discoloration, just the normal change of color of a cut man. This was the single best decision of my life and I would do it again tomorrow. Now I lowered the risk for the disease to spread along my penis as well as gave me so much more confidence than before.

  124. Simon

    I’m new to this scene but I’m just wondering why nobody has been discussing polydeoxyribonucloides (PDRN) for the treatment of lichen sclerosis? There was a small study done on it but all of the patients had clinical improvement and 9 patients had complete clinical healing. I know it’s not exactly something thats been studied a lot, but it’s frustrating to think that there is something out there besides steroids that could help but is unavailable. Thoughts?

    http://www.jle.com/en/revues/medecine/ejd/e-docs/00/04/78/FA/article.phtml

  125. Stevo

    Hi Everyone…Just been diagnosed today after years of doctors saying it was fungal and Canestean cream would clear. Often it would go away and I thought “ahhh they were right” but then it would come back and I would just put up with the painful sex and erections.

    So glad to finally know what it is and they have given me Trimovate…a moderate steroid cream. I can withdraw my foreskin when flaccid and even when erect but it is tight when erect. I have a white ring around the end of my penis that acts like a constrictor during erection. Hence they have started me on a moderate steroid cream. My frenellum is a white mess to be honest and that is the main reason I went to genito urine clinic. I was sick of painful erection but also hate the white scaly stuff on the back of my penis.

    After reading more on here it appears I am not as bad as I thought. I salute you guys for what you have and are going through.

    I am hopeful that now I have been brave and drooped my drawers for the specialist docs I can at least get it to withdraw a bit and give me back my frenellum and pain free erections.

    All the Very Best guys…

    1. Doesn't Matter

      Hello All,

      I read a lot of the posts on this site and felt I should share my story. I am from and live in America, but have a European background (fathers side) – which led to why I was not circumcised at birth (generally babies will match the father). I never really put much thought into it as I regularly had doctors visits growing up and appeared to be very healthy in general. But into my later teen years, I noticed my foreskin was tightening. It took a little effort (leading to discomfort/hypersensitivity) to pull the foreskin back as well as return it to the normal position. After a period of deliberation, I decided personally that I wanted to be circumcised. In America most people have it done at birth and after the discomfort/hypersensitivity/occasional skin cracks and pain/occasional difficultly beginning urination; I finally brought the issue up to my parents. After a quick call with my pediatrician at the time, he quickly referred me to a nearby urologist (all I said was my foreskin was tight). Finally, I got to the urologist and after about a 5-10 second inspection I was diagnosed with BXO at age 19. Going in there with the intention of being circumcised made that seem like the perfect option (also the BXO was farther along than normal for my age and I would have needed it later in life regardless). Once I found out about the condition, all the pieces came together so to speak. Then I had my surgery scheduled a few months down the road.

      I had my surgery done 4 1/2 years ago. I have to say it was hands down the best decision I ever made – I have absolutely no regrets. I have not had any side effects. Ryan’s experience has been very similar to mine. Although I’m not posting pictures of myself online, I can say I look better than him.The doctor told me I looked ‘clinically excellent’ following the procedure; which was quite a relief. Fortunately, I live in a region of the country where the medical practice in general is quite good (Mass). It is definitely different after the surgery, but not bad by any means. Can last longer, its SOOO much cleaner, smells better, no smegma, more comfortable, the hypersensitivity dissipates quickly, looks way better, but jerking it can require a bit more lube. I know every ones situation is different with this, but I would say man up and go through with the procedure if your doctor recommends it – especially since it seems like many people require it later anyways (its safer the younger you are). I’m lucky to have had this done when I was still relatively young.

      As far as the surgery goes – no pain whatsoever. A little soreness, but I took Advil – not even the weak Vicodin I was prescribed. You will get the bruising and swelling, but it subsided by the end of 2 weeks. I think the worst part is the stitches pulling on your underwear. I found it better to wrap carefully with gauze. I also took the baths to help dissolve the stitches. They start coming out around 7 days and I too employed the method to help out the ones that were close to ready. Most of them came out with the daily bandaging routine I utilized.

      After a couple follow ups the doctor said I was good to go and I would not need anything further unless I had recurrent symptoms – which I have not yet (fingers crossed). I think anyone contemplating it should go for it, but my opinion may be bias as my experience was purely positive. It seems there is a heavy European presence on this site, which I guess makes sense based on cultural norms. Personally, if I ever have a son, my decision is already made. While it seems to be trending towards not being snipped at birth, I don’t think its worth the risk based on my experience and it seems while foreskin may not cause all the problems – it appears to make them worse. While I can’t conclude if I’m ‘cured’ by definition – things are MUCH better. I honestly can’t really remember what my ding-a-ling used to look like, but I like it better now.

      I am a bit of a worrier from time to time and can have more of a mental lapse than physical one. Every now and then I look around online to see if any improvements in treatments have been made – which is how I stumbled on this site. I can’t guarantee I’ll be back on here, but if anyone has questions for me about my experience with it – feel free to reply to this thread. I wish you all the best with this and I feel your pain. It can be a bit overwhelming to find something like this out about yourself. No man deserves this pain.

      Best,
      Just a regular guy

  126. Brad A

    I am a 21 year old male. For the past 10 years, there’s been progressing white patches on my glans, frenulum and foreskin. A semi-hard lump of dry skin near the opening, and other weird symptoms. Then a couple years ago, a random cut opened up. Nothing major, it went away after a few awkward days. It’s happened on at least 3-5 month intervals after that, with increasing tightness of the foreskin over time. Now, it’s constant. For the past 6 months masturbating at all led to 4, 5, or 7 or 8 cuts opening up which made it too painful to touch for days. The tightness is also getting too much to retract the foreskin fully. I never really noticed these symptoms happening all together, and never knew what to do. I’ve never sought doctors help with this, although am heavily debating it now, reading what I most likely have, since every critical symptom is apparent and progressing.

    I know it’s foolish to avoid medical help, but the idea torments me. Yes, I’m a coward with this. I don’t want to face a doctor and say all this. I have immense issues with ridicule, and other things which torments me endlessly. Even if it’s just perceived ridicule that is only apparent in my head. It’s terrifying, and more so to have to rely on immediate family to even get me to that medical help.

    The other thing that strikes me is the similarities to something I’ve already gone through, the roundabout of clueless doctors and a poorly understood illness. For a couple years prior to this developing, I contracted Lyme disease. I figure at the time I was diagnosed medically, it had been developing for close to three years. The last year of that was when I was actively trying to get help, because those little symptoms I was having were getting terrible. Excruciating pain which moved from an inch of my body to the next with no apparent cause or relation, immense fatigue and pretty much every random symptom you can imagine, I had. This led to doctors telling me the same things over and over again- ‘You’re making it up.” “You’re making it up.” Every day. Every appointment. Every emergency room visit, unable to walk more than a slow limp. “You’re making it up.”

    I’m absolutely mortified at the idea of going through that again. I can’t. That year killed me. I already feel close to death, in my actual physical state. It seems what many with BXO go through, being told it’s something else or just refused to be given treatment. It took over a year to diagnose me before. Emergency room and doctors every other day, literally. Then when I was diagnosed, I was given an inefficient treatment and told there’s nothing more they can do. It’s been chronically progressing since then. It really terrifies me the striking similarities between the stories I’ve read about treatments falling short, particularly in later stages which mine seems to be in both cases. As well as diagnosing and the lack thereof. Not to mention, having to go through all sorts of hoops and support groups just trying to find a doctor who understands such illnesses.

    I honestly don’t know what to do. As it stands, I have no choice right now. I can’t seek anything, especially not diagnosing and extended treatment with different doctors and specialists, as I don’t have insurance, I cannot afford insurance, I’ve been completely unable to work because of Lyme progression, and I’ve been repeatedly ignored in applying for free government insurance that I qualify for with my state. I don’t know where to turn. Where the hell do I go from here?!

    Does anyone know of doctors in the Massachusetts area? General practitioners particularly where I’d probably have to start, specialists and otherwise? Things I can do in the time until I CAN seek treatment to help stem the issues? I’ve read about stretching the foreskin and similar specifically to help the most obstructive issue right now- The tightness and cuts (which, thankfully, have not gotten to anywhere near the extreme that a lot of people I’ve read here have! Don’t get me wrong and think I mean anything like that.) I mean, if I do finally hear back from the insurance I’ve applied for that’ll probably be 1-2 months away, minimum. THEN I’d have to seek out the actual help. Which, realistically, with my mental state means about 4-6 more months of getting the courage and then going to see a GP. Yes, I know I’m only hurting myself further with this.

    Anyways, this rant and ramble has gone on way too long- You get the picture. Can anybody cut through this incoherent wall of text and offer any kind of advice, help, suggestions, names, links, support? Thank you, so much, if you’re still reading at this point.

    -Brad

  127. mark

    Hi
    This is my first time on this site

    I am a 53 year old guy that has had recurring balanitis for many years – originally I kept treating it as thrush and eventually the symptoms would disappear but eventually it would reappear with the usual redness and slightly raised red bumps

    I have some slight scarring / white patches on my glands – but don’t have any tightening of the foreskin and able to perform normally

    I agree the appearance does sometimes looks very fierce / inflamed and together with the red lumps – not the best

    My GP seems quite blasé about my condition and has only just referred me to a specialist

    its “good” to know that there are other guys out there with the condition and even more reassuring to know some are even self managing the complaint well

  128. Ed

    Hi all

    40 year old (worried sick) male from NL here.
    Just wanted to share my story here, I found a lot of useful information on this site and also hope to find some comforting words in reply to my story and worries.

    As they say, hindsight is always 20/20 and I should have been more alert in the past.
    Rewind to august 2012, while on summer holiday.The missus and myself were feeling frivolous and had some nice sex. Afterwards I had a slight itch at the foreskin, so peeled it back to find some yellow, not-so-fresh smelling discharge. Cleaned it all up and thought nothing of it, other than it might have been some smegma due the warmth (it was 34 out there)

    After the summer also experienced some pain in the foreskin while ejaculating, again…the alarm bells should be ringing loud as hell, but thought nothing of it. Didn’t find any blood, cracks or tears so I though all was ok!

    Some weeks later the itching began, but thought it would go away if I kept things ultimately clean.

    As it didn’t clear up, I went to my GP (this is now March 2013 and I explained I thought it would be candida and asked for prescription meconazolnitrate, which I got. My GP (bless him) noticed that there was phimosis and suggested I have a look at it at the urologist’s. Lucky for me I could go the very same day and was told that this was scar tissue, which would progress and not get any better. Only available option would be a radical circumcision. No mention of LS or BXO for that matter, did explain the itching and discomfort, but he told me to keep on using the miconazolnitrate.

    I then told the urologist that I would need some time to let this sink in. Biggest mistake of my life. Should have decided then and there to chop it off. But, I didn’t and went home under the impression that it was merely some scar tissue, accompanied still by candida.

    Fast forward to December 2013. U normally try not to google to much for symptoms (if you google any symptoms, the outcome in most cases, even with an overgrown toenail, will be that you are in mortal danger)
    Fed up with the constant itching I decided to google for scar tissue, itching and foreskin. This lead me to my first encounter with LS, something I had never heard of before. Naturally I became quite scared and decided to not wait any longer. Rang the urologist’s and eventually after a short waiting period I was up for a radical circ on January 30th.

    The operation itself was easy and without any discomfort or pain (epidural FTW) Had loads of fun with the crew and the urologist performing surgery.
    She did note that the phimosis was quite severe and also noted the scarring inside the foreskin, she also announced that she would send it for pathology as she suspected lichen sclerosus. I explained the story (about the same as above, but shorter) to her and asked for prognosis and treatment, to which she explained about corticosteroids.

    She also noted that my glans was also affected and pointed out a white line developing from just under my urethra to where my frenulum was.

    Now 9 days ago, the wounds are starting to heal, I have no real over sensitivity on my glans, except for where the white-ish spot is, just below the urethra. If I touch there, or when it accidentally rubs against a seam of my underwear it irritates quite much.

    I am due back at the urologist’s for a check on the 13th and also the result from the pathologist will be discussed. I am quite sure it will be LS or BXO for that matter and be sent to the dermatologist’s

    At this point my condition is getting to me quite heavily I sometimes wonder if my fella will ever work as it should and I can have a normal, healthy sex life again. I know that my wife likes the idea of me being circumcised and naturally sees the advantages of that.

    Can someone share with me a little about the rate of success that us guys with LS on the glans have after circumcision? I know that it varies per person and there are no real statistics available, but any comforting words are more than welcome. As I said I have been worried sick, get little sleep and am trying to prevent myself from obsessing over this.

    My apologies for ranting on like this, it also helps to write the full story, so thanks for reading and again, more thanks for taking the time and effort to reply.

  129. Rood

    Ed … Looking forward to learning the results of your checkup on 13 February, and trust the results were positive. And don’t worry about ranting on. The disease is so rare that every bit of information is helpful.

    As for the effect of LS on the glans … I’m afraid that men circumcised as infants can have LS. Some men have even reported it affecting their circumcision scars. Apparently it’s a disease that usually affects the genitals, but I’m told it can appear almost anywhere on the body, even (rather rarely) in the mouth, if you can believe that.
    Several women have reported some success with stem cell treatments … others with a combination of an Estrogen and Testosterone cream.

  130. Ed

    Hi Rood,
    Thanks for your reply.

    Well, I went to the urologist’s for the results a little earlier, due to a stitch breaking, which made for an opening where the skin should be held togethar.
    They told me that “there were indeed cells of a lichenous nature found in the specimen, there were absolutely no malignant cells, but follow-up by dermatologist would be needed in order to ensure it will be treated best as possible. I love the pro-active attitude of my hospital.

    My urologist initially wanted me to wait for 5-6 weeks before I went to the derm in order for the circumcision to properly heal, but I didn’t want to wait that long, so now my appointment with the dermatoligist is Tuesday the 25th.

    The circ is now 3,5 weeks ago, almost all the sutures are out, the spot where my frenulum used to be has healed up nicely and irritation is way less than earlier. I have some reddish/yellowish spots on my glans where the affected foreskin was in contact, believe it to be Zoon’s plasmacel balanitis, that spot has shed skin 2 or 3 times now, so I think that will clear up by itself.

    I will make sure to post the findings of the derm on Tuesday.

    Thanks again

  131. Jamie

    Hello everyone!!

    It’s nice to find this website, wish I had found it years ago when I was having such anxiety and worry over my LS. Figure I’ll start with sharing my story.

    So I always suffered from a tight foreskin as a kid and nearly had an op when I was still in primary school that was cancelled last minute when I was forcibly able to pull it back. As i grew older I started masturbating and cracked my foreskin up a fair bit and tore the frenulum a couple of times but aside from one doctor’s visit I tended to keep quiet being absolutely terrified of discussing the issue much with my parents. I’m never really sure when the actual onset of Lichen Sclerosus happened, it seemed to be something I was only vaguely aware of until it had spread over a decent part of the head of my penis in my mid to late teens. I eventually went to a urologist with the problem and was given dermovate after adamantly deciding I didn’t want a circumcision but after months of using that it didn’t really seem to have made much of a difference.

    So I was then circumcised, something I was extremely nervous about but afterwards the LS definitely spread no further and I was free of the tight foreskin that had been a bit of a pain. Shortly afterwards I also had a procedure to stretch the urethra out and was given little devices to stick down it to stop it from scarring up at all but I haven’t used them or needed to for like 2 years as luckily there seems to be no progression in the inflammation for me. That was all done when I was 18. I’m 21 now and I’m happy I think on the whole with the circumcision decision, there is a lack of sensitivity concern on the areas affected by LS but I presume that would very much be a concern with or without a foreskin.

    After sweeping it under the rug a while certain concerns have bubbled over about it recently and figured I’d put forward a few questions and join in on the discussion here. Apologies if what I ask has been addressed here already but there’s a lot to read and I have only read a fraction.

    Has anybody found that use of dermovate or anything else has been able to increase the sensitivity of areas affected by LS? I was thinking about trying dermovate again on the affected area as it has been a couple of years since I tried using it. The area is discoloured and slightly raised compared to the surrounding area but honestly the sensitivity is what I’d like back more than the appearance.

    Also my biggest concern really has to do with what is likely an unrelated issue but has anyone suffered any erectile dysfunction they would associate with the condition? It’s likely a psychological issue for me and I plan on going to the doctors soon about all this but thought I’d ask.

    Thanks for your help and sorry for the long post but figured my story might be helpful and I could then answer any questions people might have about my experience with circumcision etc.

  132. John P

    Hi guys,

    I am 33 years old and I have LS for nearly a decade. All this years I manage to control it with dermovate. Then, 2 years ago I found some red spots on my glans, they were aprox. 3 mm in diameter. I must add that my affect foreskin remained pretty stable all this years. I went to the dermatologist and she told me that probably the rash was created by dermovate. She replaced the dermovate with some light-weight steroid cream, but the spots continued to spread.
    I went to another dermatologist and he put me back on dermovate (1 month 2 times/day). Last summer everything was looking very nice. The dermatologist and I were delighted with the results. I had a very nice holiday (which I think now that was the last happy holiday).
    Soon after September came and my glans eczema erupted ferocious and surrounded my urethral orifice. The burning sensation was something I had never experience during all these years. I got very scared… I start to read about it, the dermatologist gave ma a number of other disease that could do this. He mentioned Queyrat Erythroplasy/Bowen, Zoon balanitis. I was terrified.

    I searched for another opinion and I met a prof. dr. dermatologist. He told me that my “house was on fire” and I have to make a circumcision (about the rash he said that it could be Zoon), which I did 5 months ago. Painless operation and after 6 weeks I could make sex again without any pain + new extra pleasure sensation.

    After the operation my red spots became normal color and began to dry and fall several times. I went back to the prof. dr. and he told me that everything will be ok and he stated that he was wrong about Zoon. For the next 4 month after the operation I had no itching or burning sensation and I never used Dermovate and more important for me was the fact that the expansion of the red spots stopped… or so I hoped…. Now 5 months after the operation I’m very sad because although I have no burning nor itching sensation and the color of the spots is very similar with the rest of the glans (only the color, not the texture) my glans eczema started to expand and the spots are like a little crater.

    Topical corticosteroids are highly effective, and remain the first-line treatment for LS … but they are not healing your LS. For all the “junior” sufferers (affected by LS recently) my advice is to make a circumcision. You have nothing to loose. Consider this advice from a LS “semi-veteran”. Things go only worst over time if you keep your glans covered by the foreskin as foreskin tend to become adherent to the glans.
    Please see what Enzo Palminteri or Guido Barbagli (one of the best European urologist) have to say about LS.
    http://www.urethralsurgery.com/lichen_sclerosus_penile.asp

    Only if I had been more clever 5-6 years ago and I had the affected foreskin cut off…….I mean, what’s the point to have the glans covered by a sick skin………. think about this….

    Salutem
    P.S. please excuse my English.

  133. Brasil

    Olá Pessoal!

    Muitos depoimentos para ler. Concordo que deveria ser mais organizado quanto à disposição dos assuntos, mas enfim: vamos ao que interessa! O pior efeito que essa doença pode trazer é o psicológico, que fica devastado pela incapacidade decorrente da fragilidade que a pele passa a ter. Também tive tudo isso, mas não em grau tão elevado como alguns colegas que aqui registraram seu sofrimento. Levo uma vida relativamente normal, logo, vejam:
    - fui contaminado por HPV tipo I, doença esta que possui ciclo ativo de 1 ano e meio e recidivas mais espaçadas/distantes a contar do transcurso desse tempo. A manifestação dos sinais do HPV foi posterior ao problema com o líquen escleroso e atrófico. A literatura técnica fala da possível relação entre essas duas afecções;
    - A manifestação dos sinais e sintomas do líquen foi precedida de intensos traumatismos penianos decorrentes de relação sexual desmedida;
    - O líquen surgiu em mim em um período de poucas horas de sono, muito estresse e pouca diversão, juntamente com outros problemas de pele de origem desconhecida;
    - Fiquei oito meses até diagnosticá-lo, sofrendo muito psicologicamente. Fiz tratamento com corticóide tópico, que só diminuiu a resistência do tecido, para piorar a minha situação, e anti fungos. Depois desse tempo, encontrei uma médica que prescreveu proprionato de testosterona, o que me ajudou a restabelecer consideravelmente a pele afetada;
    - Contudo, as recidivas eram constantes, logo, começei a traçar algumas relações a partir de comportamentos passados: dormir pouco e me estressar eram coisas que acentuavam o potencial da lesão;
    - Já desesperado, fui recomendado a uma médica especialista em dermatologia clínica (difícil de encontrar), que resumiu o tratamento à hidratação do local lesado.

    Então, ficam as dicas da minha experiência:
    - Eu uso diariamente um creme hidratante, à base de karité, em abundância na região. É da Johnson e Johnson e custa aproximadamente R$ 8,00 o frasco;
    - Começei a regular a quantidade de horas dormidas, bem como a forma de administrar problemas e situações estressantes, inclusive a existência desse doença em mim, logo, as recidivas diminuíram sensivelmente;
    - Minha vida sexual ficou relativamente normal depois das medidas acima adotadas. Fiz circuncisão, mas a menor quantidade de pele não parece ser boa para casos como o nosso, bem como a má ou excessiva higiene no local prejudica a pele frágil em função do líquen.

    Neste momento, estou em crise, mas porque venho dormindo pouco, muito estressado com problemas da vida e me divertindo quase nada. Entrei na internet para ler mais sobre o assunto e vejo, pelas experiências aqui relatadas, que o caminho que percorro é interessante. Por isso, sugiro que os colegas atentem para o meu relato, haja vista que tenho tudo sobre controle apenas com creme, sono em dia e pela ciência da necessidade de esperar que o organismo reverta o quadro.

    Sucesso a todos!

    Um abraço!

    1. Post
      Author
      admin

      Translation to English of this message.

      Many testimonials to read. I agree that it should be more organized in the disposition of the issues , but anyway , let’s get to it ! The worst effect that this disease can bring is psychological, that is devastated by the disability due to the fragility that skin happens to have. I also had this, but not in so great a degree as some colleagues here who registered their suffering. I live a relatively normal life , so take a look :
      - I was infected by HPV type I , a disease that has active cycle of 1 year and a half and far more spaced / relapses following the expiration of that time . The onset of signs of HPV was after the problem with lichen sclerosus et atrophicus . The literature speaks of a possible relationship between these two conditions ;
      - The onset of signs and symptoms of lichen was preceded by intense penile injuries caused by excessive sexual intercourse ;
      - Lichen arose in me in a period of a few hours of sleep , too much stress and no play , along with other skin problems of unknown origin;
      - I was eight months to diagnose it , much suffering psychologically . Did treatment with topical steroids , which only decreased tissue resistance to worsen my situation , and anti fungal . After that time , I found a doctor who prescribed testosterone propionate , which helped me considerably restore the affected skin ;
      - However , recurrences were constant , so I started to draw some relationships from past behaviors : some sleep and stress me were things that accentuate the potential injury ;
      - Have desperate, I recommend a medical specialist in dermatology ( hard to find ) , who summarized the treatment of the injured site to hydration .

      So are the tips from my experience :
      - I use a daily moisturizer based on Shea , abundant in the region . Is Johnson and Johnson and costs about R $ 8.00 bottle ;
      - I began to regulate the amount of hours slept , as well as how to manage stressful situations and problems , including the existence of this disease in me , so relapses decreased significantly ;
      - My sex life was relatively normal after the above measures adopted . Did circumcision, but the least amount of skin seems to be good for cases like ours , as well as poor hygiene or excessive onsite harms fragile skin due to the lichen.

      I am currently in crisis , but because I’ve been sleeping too little , too stressed with life’s problems and enjoying myself almost nothing . I went online to read more about it and see , the experiments reported here , the way I walk is interesting. So I suggest that colleagues pay attention to my story , considering that I have everything under control with just cream , sleeping in the day and science need to wait for the body to reverse the box .

      Success to all !

  134. Dan

    Hello everyone,

    I too have been recently diagnosed with BXO. Feb 27/2014. I also have phimosis and I’m unable to retract my foreskin. My urologist has recommended a circumcision. So I have my surgery scheduled this coming Wednesday. Currently only my right glan has been affected by the BXO, it gets quite inflamed periodically so circumcision is my only option. I also have leakage in my urethra and the urine gets trapped between the foreskin and the penis glan which leads to inflamation and pain. The past fews weeks now I have been experiencing pain and discomfort with 5 -15mins whenever I ly down, either flat on my back or on my side. Specifically a shooting pain in the right glan begins and then it becomes a throbbing pain, then the right glan becomes all swollen and hard. I have to stand up to relieve the swelling & pain in the right penis glan. Within 10-15mins the swelling and throbbing will subside. Also, I’ve recently been experiencing a pressure sensation not pain in my urethra by the bottom of my scrotum. My urologist said due my leakage, urine is building up in my urethra that’s the sensation I’m feeling when I sit longer than 30mins. The doctor said that would corrected when they scope my urethra, they’ll laser any leakage in urethra. So I’m hoping for the best once I’ve had my procedure. Has anyone experienced pains in the penis glan when they ly down flat, on their side or their stomach? My doctor isn’t sure why I’m experiencing pain when I ly down, thinks it may be in my head, but I know that the swelling and pain is real and not in my head. Has anyone heard of this occurance? I would greatly appreciate any feedback you may have regarding my pains whenever I try to ly down. Can’t do it for any longer than 15mins till the swelling and throbbing in the penis glan begins. I now have to sleep in a seated position but now sitting for long duration leads to the pains as well. Your feedback is greatly appreciated.

    Thanks so much, I glad there is a forum for people like us to talk about what they are experiencing. It’s certainly helpful. Thank you creating this forum. I’ll get you update on how my circumcision works. Wish me luck!
    Dan

    1. Tyler

      Hello Pete,

      I am new to this site, so I would like to introduce myself. I am living with LS for 10 years by now (since I was 17). It all started with a little cut at the frenulum. Then there was a little change of colour over the years, mainly affecting the frenulum. I didn`t think that this could be a problem. It was hardly visible. Then 2 years ago more parts got affected and the itching and the “loosing of the old skin” began. So I went to the dermatologist and had an biopsy. LS was confirmed. He told me that he wants to try ointments first before circumcision. I am using Protopic once a day. If it seems to get worse, I am always applying it twice a day. The symptoms totally vanished and I have a normal sex life since 2 years now.
      I still dont have any problems retracting the foreskin, so nothing changed much.
      The only problem is that it seems that the white color is affecting my glans and it is going further and further, affecting ca. one quarter of the glans now. But I dont have any problem in my daily life and when erected, one cannot see the white color anymore.

      I hope we can share our cases here, in pursuit of finding better treatments in future.

      1. Bob

        That is great to hear!

        Tacrolimus has shown to be a very promising treatment, but doesn’t get the recognition like Potent Steroid Creams, because it is much more recent onto the market and the testing of it for treating Lichen Sclerosus has only recently started.

        Nevertheless, studies that have been done found it very effective and testimonials like yours only reinforce that, so i would encourage anyone to ask for it from your Dermatologist if Potent Steroids are not working past 2 months, for whatever unlucky reason.

        +1 about waiting for better treatments, for those who seem to be struggling with the disease in a more progressed stage.

        I have personally found Steroid Creams hold back the disease well enough, because i had caught the disease at a fairly early stage, but i do worry for the future.

        That said, i may be wrong, but i don’t think the disease gets more aggressive over time, the rate of progression generally fluctuates through out your life but if you can keep it at bay at an early stage, it seems to never progress much for years, maybe for life.

        I do hope that is the case, for those managing the disease well at the moment!

  135. cole

    Hi everyone! This blog is so important! Not only for informational use but to let people know your not the only one! Im twenty five years old and was diagnosed when I was twenty. Started as a white spot on the frenulum, then turned into a hole in the frenulum. My frenulum snapped. Then it spread slowly across the first inch of my foreskin. It wasnt always sore but after a bad breakk out I went to get diagnosed. I was given clobetasol propionate. Over a couple months it has made all the sores go away but the skin is still pretty tight. I’m hoping over time the skin will go back to normal taughtness. Anyways good luck to everyone!

  136. petar ilijovski

    Hi.I was diagnosed with ls in januari .At that thime only one third of my glance was coved with white spots bat now it’s starting to spread to the other parts of my glance.I realy think that circumcision will stop the further spread of the disease and stop the further progress .i use testosterone propionate 2% cream every night and coconut oil during day time,i have no simptoms of itching ,burning or bleading (simptom free) and i can pull back my scin normally.All the medical reports i’ve read say that cicumcision stops the disease in 96% of the cases ,and i dont’t think that doctors would lie about this statistics.

  137. Neil Wines

    Hi group. I was diagnosed with LS yesterday. I have had periods of discomfort and pain for over 30 years which I put down to poor diabetic control and shrugged it off as something that happens. Many visits to GP and courses of antibiotics lotions and potions later. Recently I have been suffering more with cracking and bleeding from my foreskin and it being very tight. A visit to my local GUM clinic to prove to myself and my partner that it wasn’t an STI was an odd experience. Tests done and all ok. Was sent home with antibiotics emollient cream and canestan to swallow rub on and rub in. Then visit to urology department at University Hospital London for follow up after penile implant last year. Nurse said circumcision would be best for me. This was confirmed by consultant. Said the LS was caused by urine being trapped between foreskin and head of penis. So even tho I’m quite attached to my foreskin it seems it has to go. If this stops the problem I will be one happy man. It has proven to me that if you want a definitive answer to a health problem. Seek advice from a professional who specialises in their field.

    1. gitch

      I’ve been aware of my condition for almost two months, after a multi-year battle to correct penile issues that have totally killed my sex life. I haven’t been to a doctor, as I don’t want to become reliant on potent topical steroids to manage this condition and would rather manage it myself. In the last two months, I’ve made some massive progress treating it naturally. The biggest thing I’ve found is simply to keep it dry. It’s interesting you mention that the doctors said yours was being caused by urine being trapped beneath the foreskin – that’s exactly what mine is being aggravated by too, I’m sure.

      I’ve tried a range of treatments from nappy rash powder (helps to keep the area dry and encourages peeling), 3% hydrogen peroxide, tea tree oil, Manuka honey and my latest, Perrin Creme Complete. I’ve only had that for the last day, so it’s too soon to tell how effective it is, but the first four treatments all help in one way or another.

      If it’s being caused by urine being trapped under the foreskin, then to be blunt, circumcision feels like a real cop-out from the doctors. Urine only gets there when we urinate, unless you have an incontinence problem. To me, there are FAR easier ways to solve that problem than removing your foreskin, particularly when you actually want to keep your foreskin.

      What have you tried that keeps the area dry?

  138. gitch

    Hi all

    I thought I’d post my experience with LS thus far, as I thought people could probably do with a good news story.

    I’ve had issues with my penile skin for an unknown period, but I’d estimate it to be about two years. I didn’t realise what it was until June 2014. I made the decision to try and treat it naturally, rather than go straight to the doctor and be told I’d need a circumcision. My LS was quite progressed. Most of my glans was covered, as was the majority of the inner foreskin. I had a tight phimotic ring that allowed me to retract the foreskin fully, but I couldn’t pull it back to straighten the inner skin on top as the underside was so tight. I certainly couldn’t do any motion of sliding the foreskin back and forth over the glans. The white skin was very thick and the affected skin had absolutely no elasticity. Sex was out of the question as I would have torn that skin.

    It’s now three and a half months since I started consciously treating it (I did some stuff before that helped it, but it was by accident), and the phimotic ring is still visible but barely indents at all. The underside skin is gradually coming back to normal and giving me much more elasticity, and I can straighten out my inner skin everywhere. I estimate I’ve gained another cm of inner skin length since relieving the tightness. The inner skin and the glans are the slowest to heal, but are both making progress nonetheless.

    The first thing that I’ve found, and I’ve read others saying the same thing, is that keeping the affected area dry is key. I shower in the mornings and take care to wash everywhere on my penis. I then pat the area dry with a towel and keep the foreskin back until it dries. After urination I always use toilet paper to keep everything dry. After sexual activity, I make sure I wash thoroughly and dry. While not a controlled study, I haven’t read posts by anyone who says they have done all that stuff and hasn’t noticed an improvement. Something that also helps with dryness is to apply nappy rash powder to the entire glans and inner foreskin. Leave it on all day, and by the end of a couple of days you should notice some small remnants of peeling skin. The powder will also make it easier to see where the peeling is happening.

    I had been applying various topicals. Tea tree oil, Manuka Honey, 3% Hydrogen Peroxide, and Perrin Creme Complete for about 3 months and seeing slow but steady progress. However, I got a little ahead of myself with some… err.. ‘playing’ (due to the fact that I now had skin elasticity I never used to have) and gave myself a tear which became infected, necessitating medical attention. While I was there for it i discussed my LS with doctor, who gave me some Clobetasol, which I have been using once daily for the past week and a half. He also mentioned circumcision as an option, which is most definitely not one I will be pursuing given the progress I have been making.

    Clobetasol helps. There’s no doubt about that. But I’m not stopping everything else I was doing. I am still keeping the area dry and applying Creme Complete at times when I’m not using Clobetasol. What’s most interesting is how anticlimactic the Clobetasol has been. Sure, it makes things progress faster than the natural alternatives, but the healing mechanism from my body is exactly the same. I think this shows the effectiveness of everything else I’ve been doing. The skin peels away very slowly, starting at the areas bordering on healthy skin but never in the middle of the white skin. I use the analogy of rising sea levels. The beaches will get wet first, and the mountaintops last. The skin that peels off first is the skin that the ‘water’ touches. Because of this, it feels like the recovery may be accelerating. As more skin heals back to normal and patches of healthy skin appear, the amount of LS skin in contact with good skin increases, as does the rate of progress.

    I don’t believe western medicine understands this disorder at all well. The advice you get will vary depending on the doctor, and even on their background (a dermatologist versus a urologist, for examples). My doctor suggested circumcision due to the tightness of my underside skin, while I have read other suggestions that circumcision is a last resort when the foreskin can’t be retracted or urniation becomes difficult. I noticed something interesting about a month ago. I injured myself several times during the early stages of this recovery, but each time I did, the area healed up as much more healthy looking skin. Lots of literature I have read from medical industry sources talks about ‘scarring’ and says ‘the affected skin may not return to normal’. In virtually all cases where my injuries have healed, I’ve seen perfectly normal skin underneath. So I believe the body possesses the ability to heal fully from this.

    I think my LS was being caused by urine trapped under the foreskin. I truly believe that if I did absolutely nothing except keeping the area dry, I would eventually recover. The topicals all seem to be helping accelerate things along, but are by no means the only reason I am progressing.

    I hope this helps others.

Leave a Reply