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Atrophy in Lichen Sclerosis

Posted , 37 users are following.

ChrissyC
ChrissyC

I've had LS about 2 years. I'm really lucky when I read the experiences of others as I don't have any irritation and don't really know I've got it on a day to day basis. My inner labia simply developed white edges. Consequently I haven't bothered with the cream I was prescribed. What is worrying me is how my inner lips are receding. Everything I can find on line seems to be about coping and soothing the itch which is understandable as it must be horrific. But I can find nothing about the atrophy part of LS and I'm really freaking out now. What happens if it keeps going until there is nothing left? Will my body continue to atrophise (if there is such a word) into me if you see what I mean?! I'd just be grateful to hear of someone else that this has happened or is happening to.

4 likes, 164 replies

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  • ChrissyC
    ChrissyC

    Posted

    Thanks Jo and Morrell. I'd tried both spellings anyway and at first little came up but when I tried again later there they all were. No idea why. Anyhow after reading both your postings I have found two different ones that I think you are talking about. The sclerosUS-LS with 576 members is one and sclerosIS with 9 hundred and odd is another - both closed groups. Incidently Jo - I'm UK too. You and I talk about 'mum' and with others it's 'mom'. smile I think its brilliant that we're all in touch from all over.
  • jane46246
    jane46246 ChrissyC

    Posted

    Hi all,

    for some reason my reply to vicki won't post. Yes, I too have those patches on my chest and under my breasts and they itch sometimes. My GP thinks it's tenea versicolour, but it won't wont respond to any treatments for that. I'm horrified as to what's happening to my fanny, I was only diagnosed a few months ago as for years my GP thought it was excema. Now i have no inner labia and virtually no clitoris, it's really sore round my anus the dermovate isn't working and i have to have an operation to remove a VIN growth. God, what a nightmare.......... but it is a relief to see I'm not alone. This is the fisrt sensible information I've found. Thanks girls. It's had me really tearful a few times, and i too wonder where itn will end as my vulva is dissappearing so quickley!

    • Morrell1951
      Morrell1951 jane46246

      Posted

      Hi Jane, most of your experience is similar to mine. One thing I've discovered in the last month is two things that stopped the red, sore area around my anus: no more big servings of sugary stuff (like gasoline on flames); coffee, because it makes my BMs loose and urgent, that runny poo is caustic! I'm all healed back there after only a few weeks. That was the thing that most consistently caused discomfort.

      The disappearing parts – no thanks to a GP who doesn't know what LS looks like – welcome to the club. Can you imagine the stink if men were losing their whole penises? (No slight on men who actually have LS – it's not good. But it's way more curable than women's.) Nobody would be keeping that under wraps.

      Have you watched Dr. Goldsteins' presentation? The big news was take a 20 minute bath before applying the dermovate and rub the ointment in for 90 seconds ( along time!) He swears that the women for whom the treatment isn't working just need to fine-tune how they're using it.

      https://patient.info/forums/discuss/dr-goldstein-lecture-271556

      Removing a VIN growth is exactly why we see our doctors twice a year, to catch it at that stage. That's good news.

    • vicki04
      vicki04 jane46246

      Posted

      Hi Jane, i have just seem your message i am so sorry you also have these patches on other parts of your body as well it is so hard to deal with and as my dermotolagist said are very unsightly!! well that made me feel a lot better!!! im very interested to read about Tenea versicolour the symptoms are the same i will deffo mention that to my dr as no creams etc seem to have any affect, all my patches are in areas that get hot. neck, shoulders, breasts,i also have some on the top of my legs and at the front from when i use to wear tight jeans also on my tummy (i wear linen now) it does seem to be taking over my bodysad  the dermovate does help heal the splits etc that i get down below but has no affect on the other areas. i use e45 oil in the bath as my skin is very dry. ive tried emu oil on the patches which helps a little but nothing really helps. the very first patches under my breast and on my side are noe brown which also makes it sound like tenea versicolour. my dermo at the hospital has never mentioned that it maybe something other than the LS causing these patches but i will be going to my dr with this new informations. it is good to find someone else that i can relate to . thankyou for this informations, good luck to you and all the other ladies on this site.. we are deffo not alone in our battle against LS .

       

    • jane46246
      jane46246 vicki04

      Posted

      Hi Vicki,

      my geany seems convinced my patches are tenea versicolour too, but that it's a treatment resistant variety so I'm now waiting for a referral for a dermatologist to look at it as everything my GP has tried hasn't worked (pills, creams, shampoo stuff). I felt so down today about all this. I'm still adjusting to this diagnosis as it's recent. You may well have tenea versicolour, it's really common apparantly. Do you know if there's side effects to the dermovate? I watched the medical thing by Dr Goldstein (thanks Morrell) and it worried me how strong it is. So far it's made no difference, in fact it's got worse, now getting very sore and red rather than itchy and my clitoris continues to disappear. I'm single, but what if i meet someone? How do you girls deal with the sex issue? I feel like such an unatractive proposition with all this lot and bi polar disorder as well I can't imagine anyone wanting to take this lot on........... oh god. Sorry, I'm having a bad day about all this.

    • jane46246
      jane46246 Morrell1951

      Posted

      sorry Morrell, I replied but it didn't post, i'm having problems getting my replies to post................. I think my computer's buggered. Thankas for your reply, i watched the video, bit of a horror story! I will try the 90 second thing tho, as the cream's not working at all so far, but it's only been 3 weeks so maybe i'm expecting too much.........
    • Morrell1951
      Morrell1951 jane46246

      Posted

      Oh, yes, Jane, three weeks is no time at all. After six months I had a calm spell and thought I was good to go. Sex gave me a great yeast infection immediatley. Soon after that I saw my gynae and she assured me it takes a long time.
    • margaret289
      margaret289 jane46246

      Posted

      Hi Jane,

      I find that the cream has much less effect than does the ointment.  The difference is so great that I actually asked them to redo a presciption for the the ointment when the hospital gave me Clobestasol cream.  Maybe this is the difference.

      All the best

      Margaret

    • Morrell1951
      Morrell1951 margaret289

      Posted

      I switched to ointment, too. Dr. Goldstein sid in his presentaion that something about the lipids in the cream keeping it near the surface. The ointment penetrates deeper. My gynae said to be careful with the ointment, when it melts it can bleed over to good, healthy skin, which it will thin. But I use my small pea-size dose in three tint tidbits and rub each one for thirty seconds. There's none left to bleed.
  • jane46246
    jane46246 ChrissyC

    Posted

    Hi Chrissy,

    I just recently got diagnosed and I'm freaking out too. I do have the sore itchy thing, but I'm horrified evrytime i look down there more has disappeared and i just think, where will it end. In just a matter of weeks my clitoris has virtually gone........... buried. It's awful. But thank god for this site! xxx

    • Morrell1951
      Morrell1951 jane46246

      Posted

      Jane, depending how old you are, I've had that partial burying reverse twice, once at age 38 and once at age 53. I may have been lucky – having a stretch of remission coincide with resuming sex. (I wasn't diagnosed till last year.) It's competely covered now though, flat as a pancake at age 62.
    • jane46246
      jane46246 Morrell1951

      Posted

      Hi Morrell,

      will check if i have cream or ointment, not sure. It's thick and greasy. Did your clitoris reverse all by itself? How? Poor you, I think mine's heading the same way tho. I'm 50 now.

    • Morrell1951
      Morrell1951 jane46246

      Posted

      I think it reversed after periods of celibacy. In my thirties my marriage had been mostly sexless and I recall accusing my rotten ex of turning me off sex and causing my atrophy. But in my forties I had lots of wild orgasms, so the hood must have un-fused. I had one fast partial fusing around 50 or 52 (no diagnosis, and I started a regime of soapy scrubbing, like an idiot) and I guess I was really more like 57 when I started having sex after 7 years. The final fusing happened at 61.
    • jane46246
      jane46246 Morrell1951

      Posted

      oh poor you. Do you still get any sensation? That's what worries me.......... that once it's completely buried it will be sort of numb.........
    • Morrell1951
      Morrell1951 jane46246

      Posted

      That's what made it easy to give up sex a year ago. I was kind of snowing myself. I don't think I'd felt the earth move for about fifteen years. I made do with feeling aroused. Better than nothing. But now I don't miss it at all and my husband is really good about being affectionated without sex.
    • ChrissyC
      ChrissyC jane46246

      Posted

      Hi Jane. Just to say I'm not ignoring you but that as my clitoris isn't buried as such but reducing then I think Morrell here is more useful for you to talk with. However 'where will it all end' is exactly how I feel so I'm with you there completely. I'm sure we all are on here but it certainly helps to know we're part of this large community. Hug! X
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