Male Genital (Penis) Lichen Sclerosus

Hi Matt, you are most welcome to whatever I can guide you on.  Just to confirm, I am in the UK AND can guide you in the all-round issues involved in the condition.  By all means PM me - but if you can bare in mind that, while you may not want to share your private issues with everyone online - there may be some stuff that everyone with the condition can potentially benefit from too.

We can go for it PM wise for starters .......

Hi Sandra, my LS / BXO was diagnosed almost 8 years ago.  The initial advice I was given (? perhaps the 'easy approach!) was to be circumcised - then I was referred to a Dermatologist (who also checked for the possibility of penile cancer) and the skin biopsy confirmed it was LS / BXO.

The second medication I was given was Clobetasol [0.05%] that I initially applied erratically - once I made it a regular application (usually everyday) and rubbed it in, AND stretched my foreskin at the same time, I found this worked very well and my skin took on a normal appearance.  While I do get the very occasional flare-up, this is because I got the balance of application, stretching and demands made of my penis (self-pleasuring / sexual) not quite right.

Essentially, I have heard from a number of men who would not recommend circumcision: from my perspective, if this did not achieve 100% cure, you can neither re-attach the foreskin (obviously) and those who have tried  stretching to try to 're-create' a foreskin (I have heard of a Doctor even trying this!) are unlikely to achieve good results.

*I would wonder whether there is any reliable medical research on this to show whether circumcision has been shown to provide a verifiable cure for LS / BXO - and whether those who have undergone circumcision have often needed to use medication afterwards.

Hi Wee Dugie.  I was diagnosed with LS around 3 years ago and the Urologist I went to see advised circumcision but said I could try steroid cream first.  He said it would probably not work as circumcision was the only way to overcome LS.  I tried the steroid cream for a few weeks and it didn't seem to help so I went ahead with the circumcision.  A few months after the op my glans remained sore and red, a small circular ring of scarring started to appear on the underside.  I didn't think this was LS though (I thought the circumcision would cure the condition) and went to the doctor who gave me an antifungal cream to try.  This did nothing  and it turns out the LS is also on my glans.  After several visits to different dermatologists I tried various steroid creams which just made things even more sore.  I tried tacrolimus which I was hopeful might really help as it suppresses parts of the immune system in that area.  It helped more than the steroid cream but dis not completely resolve the soreness or visible redness.  I only used this cream for 2 months so maybe I didn't give it a proper chance.

I've recently tried PRP which is quite expensive but will be worth it if it works!  This was only 3 weeks ago so it's early days.

So in answer to your question from my perspective at least, circumcision doesn't cure LS.  I sometimes think I'm in a worse place as my glans is now in the open and gets sore with contact. 

Hi John, I am both sorry for, and I have to say that I am not at all surprised by the experiences you have had.  While I have to emphasise the one person’s experience - that of my own - does not prove that every male with LS / BXO will experience exactly the same, and have the same outcomes, but my initial thoughts are that BXO in males predominately infects the glans and is only secondary to the skin of the foreskin.

I have become not only sceptical that the whole of formal westernised medicine works appropriately in the best interests of the majority of those it treats, but that there is a growing sizeable minority who do not receive the care and treatment they, often desperately, require.

Moreover, the way in which westernised medicine established itself historically, with an inbuilt hierarchy within the profession itself, and within society as a whole enables much of what they practice to go unchallenged.

In your case, trying 1 steroid for a few weeks was totally insufficient time to see whether a positive outcome could actually be achieved.  It could even be suggested that you wanted to believe what the Urologist had told you, they being an esteemed and knowledgable medical practitioner, so you ‘merely’ went along with what you had been told.

I am not criticising you in any way: however, I doubt whether instructions were given to you in a written format explaining in detail how to ensure applying a steroidal ointment would be affective for you and every patient using it.  Or, how frequently to apply the steroid, such as every day for a month, then if you had positive results from usage you could reduce the dose to every other day, then after 3 or 4 moths of continued success, try applying every forth day.

Then, probably for every  6 or 8 people out of 10 who get benefit from Clobetasol 1 or 2 people will need to use a different steroidal that is more suitable for their skin-type and severity of infection (i.e. Clobetasol is too potent for them and does more harm than good).

I would even suggest the Urologist was well-aware of their place in the medical hierarchy, that surgeons and surgery, if seen as the best option to go for, or the preferred option (of course, research controlled by the Surgical Profession states this) for a particular condition, dare not suggest anything otherwise, because if another treatment route is pursued by a patient and things go horrendously wrong, the legal profession may become involved and the first process they will check as to what should have occurred is the recommended treatment for the condition.

While Clobetasol is NOW becoming more of the accepted way in which to treat LS in females, I would suggest it will take quite some time before the majority of the medical profession across the westernised world will prefer this and may no-longer state that the preferred or ‘only way’ to ‘cure’ male LS / BXO is for circumcision to take place.  Sceptical I may be, but I am sure the predominant way in which most males are treat who have LS / BXO are along very similar lines to the experiences you have had …..

With regard to Johns case it sounds like he could have used a second opinion.  The one thing I will say is that with LS is it perhaps easier for a man that has circumcision  to keep on top of the LS without the forskin?

What makes my blood boil is that we are paying to see 'professionals'  and you would think that they would make the effort to keep up with the latest advancement on any issue presented to them.

Not only that in the face of ignorance how long does it take to google 'white plaques of skin on the vagina? and discover its LS?  instead, we (women and men) face ignorance, and guesswork. 

Where I live in latin America its even worse, you wouldnt believe the standing doctors have with their patients..they are regaled as God like creatures instead of the nitwits that they often are....its insane the level of male chauvinism out here and it makes me seethe.

I feel better for that! 

 

Hi Guppy, thanks for your thoughts on this.  As I am sure a Urologist who has had extremely severe consequences to being circumcised would no doubt likely suggest {“Penis Disorders” forum on this site} not having a foreskin presents less skin surface for LS/BXO to infect.  However, there are significant consequences for many men who are circumcised, not least of all, that it is a completely unnatural state for the glans (head) of the penis to be permanently exposed.

While here in the UK we are very fortunate to have a National Health Service [NHS] that means you do not pay anything to see a family doctor of for any hospital treatment, however, ignorance remains too commonplace here too.

I know what you mean by “God like creatures” and male chauvinism that still exists in parts of the NHS.  Although this is changing by increasing numbers of Female specialists, particularly in specialisms like Gynaecology which used to be a purely male profession in the UK, not that many years ago.

Unfortunately, here too many female Gyn specialists are also subject to ignorance and guesswork, according to many UK based women who have posted in this forum.

Keep challenging the ignorance Guppy within the Medical Profession wherever it exists …..

Hey.  Thanks for the responses.  You're right, I wasn't given any detailed information on how to apply the steroid cream, in fact the urologist pretty much wrote this option off but said I could try it if I wanted.  I of course trusted his expert opinion.

I wasn't happy about being circumcised but the prospect of being LS free was the deciding factor so went ahead.  It's worth mentioning the after care I received was non existent.  I was given paracetamol and not even a follow up appointment to check on the healing or indeed the LS.  When things got sore again the urologist said it would be best if I was referred to a dermatologist.

I actually don't mind the look of being circumcised and think if I had of had this op a few years ago then LS may not have developed.  They say it can be brought on by a reaction to urine build up under the foreskin and that did used to happen with me.

In hindsight though my treatment of choice would have been PRP (P Shot) and not to have been circumcised.  The PRP I've had is helping but the glans is now being irritated from not having a foreskin.  I'm having to be very careful with my underwear choice to try and help here. 

I plan to have another PRP session soon and hopefully this will help further.  The skin appearance isn't so bad after the PRP treatment and the LS doesn't seem to be spreading any further.

I obviously don't know how things would have been had I chose not to have the circumcision but several dermatologists have commented that it is easier to manage without it.

I guess I am where I am and I'm still determined to beat the LS.  I eat a healthy diet and keep fit, I'm in good overall health.  I've also started taking Vitamin C, D and salmon oil supplements as per the advice of others.  Have any of you heard of or tried the PRP P Shot?

Let me see if I have got this right: the Urologist recommended you get circumcised to 'cure' your LS but you still have the LS now - having gone through the op and had no follow-up?  Sounds to me like they were only interested in carrying out (another) operation to me .... even gave you some lame sounding excuse as why they additionally thought you needed it doing in historic urine build-up, which itself could have been addressed if you were aware of the correct penile hygiene regime to follow for uncircumcised Men, as, I certainly had not either ....

Are you in the UK or States?  Another tip, you need to get the amount of Vitamin D 3 right for you.  I have recently read if you were taking Cod Liver Oil, or potentially eat a lot of oily fish that has Vit D in it anyway, that you should additionally take Zinc mineral supplements.  Again it sounds like you need to discover the right amounts of D3 and Zinc that are helpful to you personally.

The PRP P Shot, which I have just looked-up is normally used - to enhance sexual arousal and treat erectile dysfunction - so I had not heard of this been useful for LS .....

My suggestion would be to start a New Discussion Forum, that way others who have shared your circumstance may have a better chance of reading it ......

I would suggest a title something like this: Male Lichen Sclerosus (BXO) after Circumcision

Mometasone Fuorate is NOT the recommended treatment for Genital Lichen Sclerosus, also known as BXO in males. Here is some details from the Patient Leaflet:

" Mometasone Furoate Cream is used to reduce redness and itchiness caused by certain skin problems such as psoriasis (excluding widespread plaque psoriasis) and some types of dermatitis.

This medicine is put on the surface of the skin to reduce the redness and itchiness caused by certain skin problems. "

.

As I understand it Cream cannot treat diseased skin, that is, LS is not a surface based skin issue - rather it is Disease internal to the skin itself and as such only ointment versions of a correct strength potent corticosteroid can manage and help control severe skin conditions such as LS.

Therefore, Mometasone Fuorate may reduce surface level symptoms for a period of time but is unlikely to control the underlying disease.

what were the early signs for you?