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
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
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