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.
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
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
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
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.
Stan , I think I may have responded to this in forum section.
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
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
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.
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
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
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 !
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.
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
I have met Dr Casabona, in Birmingham at the recent conference on l.s. A really nice guy and I send him my best wishes. Shame he doesnt move to uk……
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…………………
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.
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
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.
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
ok i ll like to update that i am from INDIA and its hard to find a doctor who is very well acquainted with this disease
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
should read option…not potion.
Pete
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?
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.
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.
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
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
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.
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……
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
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
Have a read of this! It’s quite encouraging!
http://sti.bmj.com/content/76/4/311.full
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
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.
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!
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.
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].
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?
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!
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.
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.
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
Any other worries or thoughts just ask, someone will answer in time.
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
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
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!
James, an after thought…where are you in uk? where about? and who is your dermatologist? Can you seek opinion of another?
Pete
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.
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.
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.
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.
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.
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
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?
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
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?