Picture collage: How to have sex with Lichen disease?

On clobetasol for 6 weeks. Condition for 8 months (various other ointments earlier when they thought it was yeast, etc.). During first 7 months of condition, I had sex 3 times (very brief). Felt better since taking clob so had it 3 times in the past month but very brief. (I used to enjoy long sessions).

From your description, the way to have sex is to not have sex for long periods of time? So sex is a very occasional thing?

You may be right: Having a sex life may be a thing of the past (or take so much work and be so rare that I will rarely think of it).

On a positive note: intercourse hurts but other types of sex do not hurt at all. (Only the tip of my penis is sore and painful). I love intercourse (wife does too) but that may be a thing of the past.

PS: I would love a forum for men but it seems with this and other conditions, men don't discuss their health issues, present company excepted.

PS If I go long and baby, the skin looks better but the very tip is tender no matter how it looks. The location at meatus is problematic.

Did you ever contemplate glans resurfacing?

I think your diagnosis time span is quite typical, Doctors and even specialists such as Dermatologists often look for the simple, more likely explanations first, then when treatment for that fails, actually start to look at what the condition really is. This time-span can quite literally have dire consequences for women, as what often occurs - with LS certainly - is that the external and natural ‘architecture’ of the genitalia is radically transformed due to different or separate layers of skin fusing together. In males complications of late diagnosis include Phimosis in uncircumcised males, and perhaps the most radical is the meatus fuses together making it difficult to urinate, eventually.

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No, it is not about going without sex per-se, what this gives the infected skin is the best opportunity to build resilience, and for you to recognise how you achieve the best possible level of heatlhy, infected skin. Essentially, the skin has a tough enough time trying to deal with a severe problem, then as is the case with both masturbation and sex for men, if you start or continue to add in a great deal of friction, which is fundamentally what the external skin experiences during sex and masturbation, this becomes too much to cope with and the level of severity of the infection will continue to worsen.

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The sequence therefore is - get the skin as healthy as possible, learn how to keep it that way, then, as many months down the line as you can, build back in your regular sexual activities. Easy and brief to start with, then again, learn how to keep the skin as healthy as possible while being sexually active, and build on frequency and duration from there onwards.

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Unfortunately, what I constantly experience is having to go back to a basic level again, building resilience and healthiness (or best achievable) and at the same time completely abstaining from sexual activity. And this can vary between a matter of 6 to 10 days, or certainly, even 3 or 4 months is quite typical. What I eventually learned was begin to eliminate was the lengthier periods of having to abstain, and this has meant using the Clobetasol more often.

And yes, the possibility of a male orientated LS Forum on this web site has been suggested several times in the last year, however I give most of the advice I have to pass on from my own experiences on the “Penis Disorders” section of this web site where most problems are associated with sexual activity and/or are of a contact dermatitis origin. I do get the occasional male LS sufferer on there, but perhaps as you have eluded to, two of the forum posts were from women wanting to sort their BF’s LS issues ASP so they get back to their regular sexual activities again. Unfortunately, one suggested that the BF had already gone through some quite radical surgery then found there was residual LS persisting and a Steroidal approach was the only option left.

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Fortunately, my meatus was not infected, ’simply’ (ha ha) my glans and foreskin were heavily scarred at the peak of infection, prior to any treatment. So, I have never heard of glans resurfacing. I would suggest that unless you have a specialist who has performed this 100’s of times, completely successfully, there will always be a large element of risk in such procedures. As some men would say, you only get one Di-k in life, why risk F- ing it up any further, as you cannot grow another one. Something to think about.

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Who has it told you of this possibility, has a specialist mentioned this to you? I am in the UK and on the NHS I have only seen one Dermatologist who carried out the Biopsy and confirmed the presence of LS at follow up, I was then given Clobetasol and no further options were ever discussed with me.

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This was at a relatively small hospital, where most of the practical knowledge of conditions such as LS would come from keeping females with such conditions as healthy as possible. To get a specialist with practical knowledge of male specific LS there will be relative few within the NHS in the UK.

I have found that if you discover relevant medical research articles and contact the authors, they will respond. Some of the literature is on dermatology but other articles deal with the urological impact. I read of glans resurfacing and asked my urologist. He has done it many times for other conditions. Essentially, it is used to remove malignant or premalignant tissue, for example.

Because my meatus and very tip of glans is the only part involved, I can masturbate without any irritation or pain. From what I see on videos, uncircumcised men roll their foreskin over the glans? My hand never touches the top of my glans.

PS: Perhaps I am less scared of surgery because nearly all the sensitive tissue (including the entire frenulum and foreskin) was removed with circumcision. 😦

Also - I did not find a derm who works with male LS or LP but I did find one at a university hospital (he is on med school faculty) who works with female derms at their Vulvavaginal disorders clinic. They have experience with treating genital LP and LS.

Can you go to a doctor at a university hospital? Does NHS cover that?

Thanks for the further detail above.

The term 'University Hospital' is a little confusing, for my local one where I saw the Dermatologist at, this means little more than the hospital itself takes part in the practical training of nurses and allied technical staff. Whereas some have a long tradition of being research led 'centres of excellence' and have more recently had the tag university hospital attached to them. These, more or less, train a broader range of medical staff, and of course, many both teach specialists and have academic led knowledge and technique development that is also published in peer-reviewed academic journals (I did go to a Medical School myself for 1 year).

So there will be an NHS regional centre in my area where there will be a 'greater' knowledge base among the Dermatologists of LS and LP, mainly as they are dealing with a greater case load of Lichen based disorders, and of course the majority of these are female (did you read the forum post on the 4 year old girl that has confirmed LS?, horrendous!). This may also coincide with trainee Dermatologists being based on the same site.

One further detail, yes, in theory you can ask to see any NHS registered Specialist anywhere in the UK, you still need to get your regular GP to refer you to one, but if you find out where they are based you can contact them to see if they will take self-referrals. There was actually an NHS web site that listed all the centres of excellence and the contact details of these, but, mysteriously, that was done away with.

Thanks for the update.

What I meant was a medical school (training of M.D.'s) with the faculty serving at both the affiliated hospital and a separate group practice (all med school faculty). I had to change insurance but it only cost me $20/month more to have these choices across the states.

I am reaching the age where friends have hip and knee replacements and they go to the top doctors in the USA - for a price. My 62 year buddy, a retired teacher, just got back from Chicago where he paid $22,000 (he will get some back from insurance) to have his knees done by the same doctor who did GW Bush's knees and Lady Gaga's hips.

In short, I am willing to cross the country if need be. There is some amazing cutting edge medicine that hasn't yet trickled down to the masses (and given skill level it may never).

One source online said these were the best medical schools in UK:

"HE has found the best institutions that allow you to study medicine in the UK, based on teaching, research, international outlook and knowledge transfer.

University of Oxford, ranked 1st worldwide, 15 Masters in Medicine. About studying in Oxford.

University of Cambridge, ranked 2nd worldwide, 14 Masters in Medicine. About studying in Cambridge.

Imperial College London, ranked 9th worldwide, 32 Masters in Medicine.

University College London, ranked 14th worldwide, 10 Masters in Medicine. About studying in London.

University of Edinburgh, ranked 29th worldwide, 73 Masters in Medicine. About studying in Edinburgh.

King’s College London, ranked 38th worldwide, 106 Masters in Medicine.

University of Manchester, ranked 57th worldwide, 56 Masters in Medicine. About studying in Manchester.

University of Bristol, ranked 78th worldwide, 10 Masters in Medicine. About studying in Bristol.

University of Warwick, ranked 79th worldwide, 12 Masters in Medicine.

University of Glasgow, ranked 93rd worldwide, 37 Masters in Medicine. About studying in Glasgow."

It was actually the University of Edinburgh Medical School I attended, I did Public Health there, rather than being medical or physician related. The Old Lecture Theatre that is associated both with the development of the study of Anatomy, and the Burke and Hare Scandal of the early 1800's is still there and I have visited it.

It is also interesting to contrast the health system in the States with the free NHS system in the UK - although we have a Private healthcare system as well, it is the relatively well off proportion of the UK population who opt for this. And much of their more routine care such as Dentistry and Eye Care they will receive NHS provided or funded care, rather than every aspect of healthcare being delivered privately. ....

Yes, there is a distinct difference. Of course, I am middle class and can afford the "rich" private option. Thankfully, my health insurance is platinum class. My siblings is mixed.

You wrote:

"The other most pertinent question is that what is it you are prepared to do to achieve the best possible health for your infected skin? Abstain from sex? For 2 weeks, 7 weeks, 3 months, six months?"

The problem is that whether I do nothing (and bandage/lotion) or do something, there is no difference in the skin. It is always just as aggravated. How do you know when the skin is good enough to attempt sex? What would it look like?

Sadly, they are leaning toward erosive LP with early LS. As the New York Times writes:

"A related disorder, lichen planus, more often affects the skin and inside of the mouth but can also affect genital membranes, where it can be more challenging to treat than lichen sclerosus.

Lichen planus generally has broader targets, but an erosive form can affect the anal-genital region and other body parts and be as destructive as lichen sclerosus."

So it is as destructive as LS (which I also have) but "challenging" to treat. "Challenging" is the word all the studies use for erosive LP.

What is your current treatment regime? How long ago did you first start treatment? How regularly do you apply it? If it is 9 or 10 weeks you have been actually treating it then I would suggest you are still in the early stages of building up resilience and strength - and that is presuming the medication you have is suitable for the severity of your infection, that it is then being applied sufficiently frequently enough, and to all the infected areas. If any of these factors are wrong then the skin simply will not develop resilience and strength or become as healthy as possible.

What you need to realise is that the healthiness of the skin has been severely compromised, what my own experiences would suggest is that if you damage infected skin you do not start the process of building strength and resilience part way through the process, you start almost from the beginning at best, or from zero at worst and start the whole process over again.

Unfortunately, in terms of what would 'good enough' strength in the skin look like this becomes something only you can learn for yourself. For me, my infected skin looks almost healed, that is there is still a faint but clear outline between infected and non-infected skin but it looks nowhere near what it would look like if I stopped using the Clobetasol for 5 or 6 days, for example. I can go almost 3 days without applying if my skin is healthy enough and I am not sexually active. Add the sexual activity back in then applying the Clobetasol has to be a daily occurrence, and on some occasions, twice daily application. Again unfortunately, this is something you learn to judge for yourself.

If you are actually dealing with the presence of LP and LS this could have an additive effect, in that your skin could be more greatly weakened if you were dealing with LS only. There are no clear cut rules and the medical specialists who know the most about treating these conditions in practical terms are very few and far between, and I doubt whether any would state a specific time-span for your skin to be 'healthy enough' to resume sexual activities. Yes, not very clear cut, and not much certainly around, but that is certainly the world as I know it from a male LS perspective .......

Thanks for sharing your experience.

"For me, my infected skin looks almost healed, that is there is still a faint but clear outline between infected and non-infected skin"

I doubt I will ever get to that point. After 11 weeks of clob, there is no difference in the look of the skin. I have hundreds of pictures - taken daily - but I can't discern any positive trend, only fluctuations.

My local derm said having the disease at the meatus makes sex difficult. If the skin felt like it did on the shaft, or even lower on the glans, it would not bother me. But it is on the very tip where the skin on both sides of the meatus can be twisted and pushed in different directions during intercourse. The next time I try, I may switch to doggy where I can limit the different ways it moves. Do you find a certain position is easier for you? Or, when your skin is clear you don't feel any pain so it doesn't matter?

From what I have read, clobetasol is effective with LS but LP is more "challenging." From what I have read on vulvar LP the prognosis is very poor and there is no evidence-based effective treatment. Clob enables 1/8th of vulvar LP patients to have pain-free intercourse and Protopic (tacrolimus) enables another 1/8 to have pain-free intercourse. 3/4 never get enough relief to have pain-free intercourse. 😦

Regimen: For first 9 weeks, I used clob twice daily (morning and before bedtime) and made sure to keep it applied to all areas. Since week 9, I take clob at night, then Elidel during the day (after applying Eucerin moisturizer).

If clob fails (and it seems to be failing), then I will ask about PROTOPIC but it is really a close cousin of Elidel, correct?

?One last question: Do you find that you applied too much clobetasol early in your attempts at recovery? Some times, when I worried that urine washed away the clobetasol, I would reapply several times during the day. I wonder if too much can weaken the skin because it often gets redder and the skin looks qualitatively different. There was a period when the local derm thought it was contact dermatitis (he still does) and I went without any applications. It did improve.

Clob is the only drug mentioned by LS and LP sufferers. Have you heard of any other drug that has worked for people?

My fundamental is 11 weeks is not long enough to build strength in your infected skin. So no, Clob has not failed, you have failed to give it long enough in my opinion.

I would certainly say I did not apply the Clob correctly in the beginning, I was given no direction whatsoever on how to apply it and I had to work the best regime to keep my skin as healthy as possible. The leaflet that comes with a tube of Clob certainly makes no specific mention of LS or LP for that matter.

In terms of applying it yourself I would suggest you do your breakfast toilet visits then get a shower just before you leave for work in the morning (for example) - you need a light application (I use about 8mm) and work this well into the skin - this is the critical element, if you simply apply a coat of the Clob without working it into the skin you risk having very little impact or benefit from it. In effect, this alone will prevent healing. Once I found the all-round what worked for me the infected skin became much more healtier and resiliant to things like sexual activity.

My guess would be this process took me in excess of 5 months, then I had to find how to keep a level of consistency about the 'healthy as possible' infected skin. In all honesty, I would suggest this took me way over 2 years so that I could prevent any flare ups with any level of certainty.

Not familiar with Protopic or Elidel at all - this would not seem to be a replacement streiodal treatment to Clob - this is where having contact with a Dermatologist who deals with genital skin disorders specifically is really helpful.

It is interesting that you mention contact dermatitis as the long-term presence of the conditions, I believe, CAN be one of the conditions necessary for a severe skin condition such as LS to take hold of severely weakened skin.

You do know that you MUST prevent soap and all forms of body wash, such as shower gel from EVER getting anywhere near your infected skin? ONLY EVER wash the head (and foreskin area for those uncircumcised) with water only and then make sure the entire area is 100% dry otherwise the infected skin may never sufficiently recover.

Thanks again for the advice.

"work this well into the skin "

Since you mentioned this many weeks ago, I have been religious about doing that.

I have also avoided any soap down there for 9 months now, even before I knew it was LS and LP.

Hopefully the specialist derm can help me know if it is LS or LP or both. Clob works very well for LS but not for LP.

The danger, from what I have read, is going way too long - 5 months or 2 years with a medicine that isn't effective. Early treatment of either condition is highly recommended and adjusting constantly with one med precludes using the other.

Hopefully I have answers July 19. I really hope it is LS and not LP but the total lack of clob progress suggests it is probably LP (or mostly LP). I will continue to work in the clob well but I suspect it is irritating the red areas.

Okay, agree entirely with what you have said here. Are you waiting for Biopsy results or something from the specialist?

Can you please update on what the specialist says on the 19th, I have never any contact with male LP sufferers, so this is a learning process for me too, and hopefully have it confirmed one way or another what you actually have. This is the only way we learn from one another on an ongoing basis ........

I am not sure if the next specialist with order a biopsy on the 19th. The biopsy specimens were sent to his university pathology lab and they wrote the report stating lichen planus and/or early stage LS.

I will let you know. I am so grateful I found you on here!

About friction : uncircumcised men don't need much friction (certainly not for masturbation). Sadly, I am VERY tightly circumcised and I have to jerk the entire shaft and head up and down very violently to feel anything. I had a European girlfriend who never had a circumcised man until me. She was afraid I was going to harm myself but that's just "normal" when you have no frenulum or foreskin or any loose skin. I on another forum, male LS victims who are cut describe the same dilemmas. There is no such thing as gentle sex for us cut men 😦

update, you have ls or lp ?