Picture collage: How to have sex with Lichen disease?

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A biopsy of the top of the glans came back Lichen Planus or Lichen sclerosus.

How do these pictures compare to your cases of LP or LS?

NOTE: All pics taken in May. Currently on clobetasol. Feels better but appearance has not improved. The swollen pics (5, 7 and 8) were taken after sexual intercourse. The swelling died down by morning.

Is this typical? The tip started to hurt during intercourse so I came early (after 15 minutes). Does lidocaine on sore spots help?image

Does lidocaine on sorest spot help during intercourse?

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  • Posted

    Hello jj, I think we have 'spoken' before about your issue. Just as a reminder to locate potential others who may respond to you:

    How long have you been taking any medication for this?

    If different to this, how long have you been using the Clobetasol?

    What I think you need to come to terms with is that if you have LS, it is an incurable condition and is quite literally further aggravated by applying almost anything to it, with the further annoyance that, what may work for one LS sufferer can cause further damage or intense irritation to another sufferer.

    One fundamental that I discovered is that to retain a sex life I had to first of all get my infected skin as healthy as possible, and then learn how to keep it that way without the added issues of being sexually active.

    Once I discovered all this I tried 'adding back in' the first steps back to being sexually active and what I was able to eventually achieve was a balance of not irritating the LS too much by using the Clobetasol every morning, and on some occasions, early evening as well. On the occasions when the LS is aggravated simply abstain for as many days as required until the skin looked healthy enough to recommence sex.

    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? I would suggest that unless you are prepared to do this then you are always going to be in the situation where your infected skin remains in the aggravated state it is now .....

    Perhaps other readers have something else to add to this - unfortunately I have yet to be made aware of a online forum where Men in the early stages of LP / LS can discuss the issues you have and say how they dealt with their situation successfully ......

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    • Posted

      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.

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    • Posted

      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?

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    • Posted

      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.

      .

      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.

      .

      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.

      .

      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.

      .

      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.

      .

      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.

      .

      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.

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    • Posted

      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. 😦

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    • Posted

      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?

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    • Posted

      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.

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    • Posted

      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).

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    • Posted

      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."

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    • Posted

      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. ....

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    • Posted

      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.

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  • Posted

    it looks more like L P to me and sore. i would try to let it heal

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    • Posted

      I am seeing a specialist for a followup correlation of the diagnosis. I am not sure what LS looks like in very early stage. I have some white but it is not advanced. It may be LP or it may be very early LS - hopefully I have an answer when I see new doctor.

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    • Posted

      Ha! I have no sex down pat. Even if I go weeks or months, it seems to make no difference.

      I am doubling down on amount of oral my wife gets, so my loss is her gain although we do miss intercourse.

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