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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

164 Replies

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  • christine12255
    christine12255 ChrissyC

    Posted

    Hello, ChrissyC

    I'm in Australia and went to my gp yesterday and she told me she thought I have Lichen Schlerosis - had no idea what that meant at all.  She referred me to a gynaecological clinic at a hospital about 3/4 hr away and apparently I won't get in to see a gyno for a couple of months. Currenty trying to find someone local that I can get in to see quicker.  I have atrophy too - big time.  I don't normally look down there and a friend of mine suggested to look in a mirror. Horrified to find my inner labia have disappeared and I think fused to outer labia. My vulva has been covered over by a layer of skin, just leaving a small hole for urination.  I'm stunned and shocked.  It stings and is excruciatingly painful when I wash myself in the shower and feels like the skin is raw.  I've read that LS is an autoimmune disease and I already have Sjogrens syndrome which is an inflammatory autoimmune disease where the white cells attack the body.  Yes, I can relate and wonder how much worse it will get.  A previous doctor obviously didn't know what she was doing and said its because I don't have enough oestrogen and gave me oestrogen cream which just made it more painful. She said the cream would separate the skin - it only made it worse it seems.  Trying to separate the skin flaps was excruciating and didn't work.  So need to get to a specialist urgently to find out more information and how I can be helped. I want my life back.  Is a good job I'm single at the moment is all I can say.  Do hope things are beginning to improve for you ChrissyC, I really do.

    • ChrissyC
      ChrissyC christine12255

      Posted

      Hello Christine. I'm sorry I've only just read your post to me as this is such an old thread. And of course I'm so sorry that you've joined us all with this condition. Thank you for asking, I can't say things are improving especially but I'm ok in my self. You've had such a shock, I completely understand that. Please try not to panic as it can make things worse. It does sound as if a lot has happened quite quickly for you and I think your GP needs to make the hospital clinic aware that your referral is urgent. I can't bear the thought of you going a couple of months without getting started on treatment. There is lots of help and support on this forum but I don't think I'm the right person as I tried to make my thread about the fact that I have atrophy WITHOUT fusion. No matter, that's not important right now to you. I see Morrell replied to you here and she is brilliant. I hope you listened to her diet advice and watched the suggested presentation. I suggest you start your own thread saying exactly what you've said here. More people will notice a new thread than this old one and people who suffer similarly to you who can give you the benefit of their experience. Hopefully Hanny will explain her bicarbonate of soda baths and sprays which I think may help you. You can probably find reference to this on other threads if you've managed to find this old one but I can completely understand that the word 'atrophy' probably stood out a mile to you on this one! You WILL get sorted Christine and I will look out for you these forums and hope to hear how you're getting along and chat with you again. I send you loads of good wishes!
    • ChrissyC
      ChrissyC

      Posted

      Hope you are doing ok Christine.
  • susan44003
    susan44003 ChrissyC

    Posted

    Hi, I am 69 years old and only just found this site. Relieved, and sorry, that there are so many other people with similar condition. I was diagnosed with LS nearly 20 years ago, but to be honest I think I had symptoms way longer than that, especially itching, thought it was thrush. Specialist gave me steroid, said you will itch if you don't use it, have it looked at regularly. Don't come back! 

    My right 'lip' is all but gone, and left is dark and thin, so expect it to follow. Earlier in year discovered clitorus has completely fused all way round, it happened very quickly. Went to another specialist who poked around with a cotton bud and said he saw no signs of LS! Prescribed steroid pessaries which obviously did not reach correct areas! Did not go back. Recently had intense itching and had no time to investigate until a few days later, next to clitorus there is a tiny hole in skin about 1/4 inch where the itching comes from. Used steroids intermittently, but now trying experiment with Gynest cream, Estriol 0.01%.

    Other symptoms - on inside of left remaining 'lip' there is a patch of raised dark blister like bumps which feels like an open wound most of the time. Plus outer area has a few black blood blisters.

    The white film like appearance can be scraped off with a damp cotton bud, which reduces the itching. I only was in Aqueous cream and Hydromol.

    Other problems caused by lack of skin is that I can pee in any direction so you never know where it will end up - on floor, down one leg or even your clothes, lovely!

    Feel like a freak. Unfortunately my lovely husband has had a stroke so not able to get in position for lovemaking, so we just cuddle also. Occasionally use a vibrator which could possibly be keeping vagina open, you never know.

  • Guest
    Guest ChrissyC

    Posted

    Hi Everyone, I to have receding vaninal lips, and a crack opened up where I pee, used hormone cream and is closing up now, this is  horrible desease and more and more women are getting it, it needs more research to be done to help everyone, maybe we could stard a fund, just an idea. take care all and have a happy christmas. Jo.
  • sharon61298
    sharon61298 ChrissyC

    Posted

    I have just been diagnosed by a nurse today. Am going back to see doc tomorrow. I have the same problem as you, worried about the atrophy part of it. I have on lip that is virtually gone, it is all puckered up. See what doc says tmr. I hope your situation improves.
  • bet28011
    bet28011 ChrissyC

    Posted

    Hi

    I'm a 41 yr old girl. I was diagnosed with lichen sclerosus 5 years ago, when I gave birth to my daughter. I suffered from tearing at the time of birth, and it got worse some weeks later. I was offered the same treatment as everyone: local steroids. I happen to be intolerant to gluten and dairy, and finally decided to follow a gluten and dairy free diet. The lichen simply disappeared. I just wanted to share this info, as someone might find it useful. Giving it a try is for free, and you can win so much if it works! 

    I'm a doctor, I'm not against conventional treatment. I just felt that steroids were not doing anything about the atrophy, and wanted to give it a try.

  • joan64786
    joan64786 ChrissyC

    Posted

    I to have atrophy. My inner lips have disappeared totally and also my vagina has narrowed. Has anyone else have this and can you stretch the vagina back to its normal size.
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