Causes of Lichen Sclerosus?

Posted , 33 users are following.

What do you think caused your condition? 

Any ideas, theories, inklings? A complete brainstorm opportunity.... 

4 likes, 122 replies

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  • Posted

    I think it is genetic. My mother and I both got diagnosed at the same time. 
    • Posted

      thanks lilygirl....the list of causes is growing. 

      i also think it may be familial as my mother had hypothyroidism and some kind of issues...actually with a smell which i noticed. think my sisters itch too but we haven't discussed it much. 

  • Edited

    There was correspondence in the British Journal of Dermatology recently regarding the cause of LS, and DR Chris Bunker from University College Hospital in London, who is a dermatologist seemingly interested in male genital dermatology. He suggests that it is likely that LS may be due to " chronic occluded exposure of susceptible  epithelium to urine". This means  urine on sensitive areas may be affcetng the tissues and causing inflammation which leads in the longer term to the sclerosis, which then causes either itching , soreness and lack of the normal elasticity which leads to tearing.  The reason for this suggestion is that males circumcised at birth never get LS,males never get it around the anus, LS appears around surgical scars and genital piercings, and also around urostomies (where the urine tubes are brought out on the skin after bladder removal). Circumcision also seems to cure males with the condition.  It is suggested that some genetic predisposition of the skin "barrier" , such as occurs in eczema, allows it to occur in some women and not others. This genetic predisposition may explain the connection with autoimmune diseases.  

    Dermatologists advise care of the "barrier" as the basis for almost all skin diseases, and this includes generous use of emollients (greasy ointments) in moisturising and washing, and avoiding any irritants. I have found especially that bathing daily in BathE45 is vital, showers don't seem to gently lift off all "irritants" , which include urine and small traces of faeces (incidentally Arab societies always wash with water after the toilet and consider toilet paper unhygienic).

    I then always use a barrier ointment, it is vital this is as simple as possible as many creams contain additives and preservatives which cause sensitivity ( Morhulin is recommended by a dermatologist I know as it is a blend of cod liver oil and paraffin oil., but I find it too thick and prefer to avoid mineral oil, so now I use the Yes oil based lubricant. This can be used in a thin layer, inside and outside the vagina and around the vulva and anus. ) 

    Incidentally I discovered I had sensitivity to propylene glycol after noticing nasal/throat irritation when in the car for a long time, ( proplylene glycol is in air conditioning units), and also horrendous vaginal irritation with oestrogen pessaries, which also contain it. It is in many creams includng some steroid creams. I used Dermovate ointment when LS first discovered and it worked well, but now use Betnovate ointment as maintenance, because although it is weaker, it doesn't contain propylene glycol and dermovate does. This is something to look out for with steroid creams, and also ointments are more effective, and provide a barrier in themselves, as they are based on soft paraffin(like vaseline).

    The use of the steroids helps because they reduce inflammation, and hence can break the viscous cycle of itch , scratch, inflammation. It is important to note that steroids in occluded areas like the genitals can also lead to thrush, so any sudden flare up with a lot of itching and redness can be due to that and I would find id best treated with tablets (fluconazole, or Diflucan) because of the issue with creams and preservatives. 

    As a GP, I can comment on the post about educating doctors! LS seems to have as many different appearances as there are women, as you may have noticed on this forum, and many women have dermatitis(inflammation ) issues in the genital area, due to creams, soaps, thrush, condoms, lubricants and all the other stuff we come into contact with, that it can be hard to be definite about LS. A classic full picture of whiteness, would be easily recognised, but this is very rare. As someone said, it falls between dermatology and gynaecology. Gynaecologists are basically surgeons and can do any surgery necessary but don't have the experience with ointments etc. Dermatologists do the research, and it seems to be mostly men they look at! What does that say??

    Sorry for such a long post , but felt people may like the facts as they are. Probably people have different things causing their "barrier" disruption, but the treatment is the same.

    • Posted

      Heather, thanks, that all makes good sense. This enriches what we learned in Dr. Goldstein's presentation. I've been ignoring most of the posts here about taking so much care to avoid contact with urine, but now I'm going to take it more seriously. I have psoriasis. When I'm flared, my own sweat is like pouring acid on my skin. I think the key is to at least do the barrier and rinsing when we're flared and start regarding urine as gasoline on flames.
    • Posted

      Dear Heather,

      Thank you sooo much for your very detailed and informative post. I'm absolutely delighted to hear from you and for the benefit of your experience! Think you may have contributed elsewhere earlier so its great to have you back and thanks for keeping in touch. 

      Couldn't agree more about the bias towards male beneficiaries in research.

      'Circumcision seems to cure males with the condition'....this is very interesting and I wonder if it might equate to the surgical proceedure being offered apparently in Italy ...known as stem cell surgery? Its not a vulvectomy but rather a transfer of fatty tissue to re-bulk the vulva but might involve excision of the inflammatory tissue in the same way that a circumcision might perhaps? Would value your comments.

      Lots of material here to reflect upon and thanks again.

    • Posted

      Marey, I just read the correspondence Heather quotes. (Search Dr. Chris Bunker Lichen Sclerosus.) The prepuce (foreskin) 'occludes' the urine between itself and the glans. Once circumcision removes the prepuce there's no pocket to hold any pee and the problem is solved. None of the surgeries available to women do anything about urine contacting our (genetically vulnerable) skin.

      I'm now appreciating whoever said she carries a small purse-sized spray bottle of water to use when she's out, after every pee. Especially if our treatment could get our skin cleared up – the article says the 'keratinized' (white) skin is super suceptible to irritation by urine – ha! hence the tear that appears in the middle of the white area.

    • Edited

      Hi Heather--Thanks for taking the time to share your knowledge and thoughts. Very interesting idea of barrier disruption.  I've been wondering for myself if my use these last few years of bioidentical creams could be irritating my vulval tissues.  I have used estrogen and testosterone cream there during the day and progesterone cream at night, so there was a lot of goop going on down there.  The creams are prepared in a base which supposedly allows them to penetrate the tissues (lipoderm and versabase).  Anyway, I now use all but the estrogen on other parts of my body, just in case they have been the cause of LS starting for me this year.  Any thoughts on whether these creams could have had a barrier disruption effect?  Thanks for any thoughts you might have on this.  --Suzanne
    • Posted

      I'm also wondering if anyone else has noticed a change in body odor since menopause or LS.  I went through menopause this last year and also just developed LS at about the same time.  I've been noticing a different smell than my usual--not bad, just different.  It's a bit more yeasty smelling (but I don't have any yeast infection symptoms).  I have heard that LS could be the body's way of dealing with a viral, bacterial, or fungal intruder (an overreaction), or could also be a response to the barrier disruption or traumas to the tissues.  Not sure.  Does anyone else notice a change in odor?  
    • Posted

      Yes..I 've noticed this...sometimes my daughter tells me I'm whiffy....eek....could just be my feet tho..I do like getting grubby!! Good and inviting for those friendly bacteria!

      Interesting theory!

    • Posted

      Seriously though I think you're on to something!

      I noticed my mother had a changed smell at some point...kind of intriguing..found myself sniffing around to try to work out what I was noticing. I wonder if it wasn't some kind of anti pheramone message...'not fertile' ...being sent?! 

    • Posted

      It would make sense that we are no longer sending the same signals after menopause.  Kinda sad!  sad  
    • Posted

      oh but it could be a completely 'other' signal...eg not fertile so available for uncomplicated highly elaborate sexual relations!!

      cept its the last thing i'm personally interested in at the mo!! but thats beside the point.

      the point is thats there s a difference and for some detectors...(!) it may be just the right message!!

    • Posted

      Oh, and I also wonder about all of the chemicals that our bodies sensitive tissues are exposed to, including toilet paper, minipads and other feminine products, lubricants, petroleum jelly, soap residues in our panties, etc. I've tried to reduce exposures and move to more natural or organic products, but it's nearly impossible to control all of these things.  As well as urine, there's a lot that could be irritating to our vulvas!
    • Posted

      Think it was hanny who deserves the credit for that innovation! Thanks hanny x
  • Posted

    Heather...I was wondering if we could impose upon you for a view point about 'Dr's apt' ?

    This is a new thread from sha.....we're all pitching in with contributions to suggest for modern testing. 

    The first thing is that I appreciate you will likely want to defend the limitations placed upon the NHS ...(or maybe you won't actually from your earlier perceptive observations about male bias in terms of research benefit...!? ie we're worth it!)

    Some of us have been following some of the front runners in health solutions from The States...ie MD's who have gone on to train in naturopathy ..(now a new and separate discipline described as functional medecine). With respect to thyroid testing it seems that if there's a clinical picture THS testing alone is insufficient. In fact THS may come back as being within normal limits whilst other unsought results are out of kilter...due for example to T3 not becoming available  adequately.....unrelated to TSH ....perhaps more an indicator of accurate signalling by the pituitary in any event than being directly indicative of thyroid competance . So now simultaneously checking for liver function and T1 and T2 as well as T3 and free T3 and reverse T3 as well as T4 is apparently indicated according to functional medecine practioners. Disconcertingly my GP told me there was no such thing as reverse T3 or free T3, at variance with the functional observations. Ok I need to quote the research....sorry I'll get back to you with attributions.

     

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