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Symptomless LS but loss of parts

Posted , 34 users are following.

ChrissyC
ChrissyC

Is there ANY one else out there who has LS in the way that I do? I've taken part on several threads but have really ended up feeling more alone than ever. I have NO symptoms and I do know how lucky I am not to suffer the way most people do. My inner lips just turned white and despite diagnosis and being given Dermovate they completely disappeared in around 2 years. And now my clitoris is going too. No itching, no fusion or adhesion. It is horrific to have nothing I can do simply watch helplessly as it goes. Has anyone else experienced anything like me? I feel quite the freak and so alone.

4 likes, 156 replies

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  • Morrell1951
    Morrell1951 ChrissyC

    Posted

    Chrissy those are symptoms, and the same ones I've had. Dr. Goldstein says women who still have female hormones mostly don't experience itching and burning. When our clitoris disappears it's because the inner lips fuse together over it, hiding it. He also mentions what happened to me in the final stage of that process: a big abscess between the clitoris and the new covering scar. You ARE suffering, as you'll be very gratified to hear Dr. G. say over and over. It sucks to lose the sensitivity there. He shows a pretty simple surgery to expose the clitoris again, but only he and three other surgeons in the US perform it. He said it's no longer true that surgery just re-scars. His 1200 LS patients are on such a thorough treatment program he's confident the steroid ointment will prevent re-scarring.

    His big aha for me is we should soak in warm water 20 minutes (yaayyy! baths again!) and rub in the ointment for 90 seconds to make sure it penetrates deeply. We should stop worrying about thinning the skin being a side effect. It's actually part of the 'treatment strategy', because LS by its nature produces very thick skin with very few live skin cells in it and way in the 'basement layer' are all the inflammatory cells we need the meds to reach. So, 1. soften by soaking, 2. rub, rub. rub. This should improve the effectiveness of the treatment a lot. I'm very optimistic myself. He also says that the ointment penetrates better than the cream, so I'm putting aside a new tube of generic Colbetasol cream and getting a new tube of Dermovate (brand name) ointment.

    Alan, our moderator has said we can post this link to the thread that has a link to the presentation video.

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

    • ChrissyC
      ChrissyC Morrell1951

      Posted

      Morrell I swear to you I have no fusion of inner lips (well I haven't got any I'm just completely flat there) OR of the clitoral hood over my clitoris. It is still completely exposed, just getting smaller. My consultant confirms this and says some people ARE non symptomatic. As it happens at the moment I can still orgasm but I have NO idea what to expect in the future, whether it will just go like my lips. I have always used ointment not cream as she said right from the start that cream was no good. I have not had a period in nearly 3 years so I'm not sure where that leaves me in terms of remaining hormones but young women with masses of hormones itch badly
    • Morrell1951
      Morrell1951 ChrissyC

      Posted

      It sounds like you have both LS and post-menopausal atrophy.

      I Googled Post-menopausal clitoral atrophy and found a good page:

      Estrogens and androgens are required for genital tissue structure and function. These hormones act on estrogen and androgen receptors, respectively, which exist in high numbers in genital tissues, including the epithelial/endothelial cells and smooth muscle cells of the vagina, vulva, vestibule, labia, and urethra. Diminished estrogen production renders women’s genital tissues highly susceptible to atrophy (thin, fragile structure).

      Physical examination of the postmenopausal woman’s genitalia shows clitoral atrophy, phimosis (when the clitoral hood does not retract limiting exposure to the glans of the clitoris), and nearly absent labia minora. The appearance of a woman’s labia minora mirrors her level of estrogen (estradiol), because these labia are exquisitely sensitive to estrogen (estradiol).

    • ChrissyC
      ChrissyC Morrell1951

      Posted

      Thanks for all the info Morrell, it's so good of you and fascinating. I'm really not sure how much the menopause has to do with all this, well my particular experiences anyway as I've said to Sha further down. When I first went to my doctor and described what was happening to me she tried to fob me off, 'Oh it'll be the menopause dear.' The consultant said LS was more prominent among menopausal women which is a rather different thing to say. The consultant has always attributed the loss of my lips and the reduction of my clitoris to the work of the LS rather than menopausal atrophy. I'm not saying that doesn't happen, of course it does but this is rather more pronounced and speedy than would happen by the menopause. I really don't know what to think
  • sha1271
    sha1271 ChrissyC

    Posted

    Hi, are you premenopausal? Not everyone gets itching. The first thing to go was my inner labia. No  losss of clitoris,  I was diagnosed early and have been using Clob for ten years.
    • ChrissyC
      ChrissyC sha1271

      Posted

      I'm well into the menopause, nearly 3 years without a period, still having major hot flushes. I've used the ointment properly since being diagnosed, about 4 years now. It didn't stop my labia going, going, gone and it isn't stopping this either. Thanks for replying Sha
  • sha1271
    sha1271 ChrissyC

    Posted

    I know what your saying, like me, my inner labia just went flat instead of fusing together. But I can see the scarring where they were. It looks like they just fused into the vulva.
    • ChrissyC
      ChrissyC sha1271

      Posted

      I wouldn't really say I look scarred either. They just aren't there any more. It's quite bizzare really.
    • sha1271
      sha1271 ChrissyC

      Posted

      It does sound like your architecture loss may be due to menopause and you may have LS as well which would explain white skin. did you have a biopsy done, sorry not sure if you already said.
    • ChrissyC
      ChrissyC sha1271

      Posted

      I did have one yes. Definately have LS. Irony around the pain of the biopsy and the discomfort of stitches and now that biopsied area just doesn't exist any more! I'm really not convinced my loss is down to the menopause. When I first went to my GP she said the things I'd noticed about myself would be because of the menopause. I really had to push to get her to look because I knew it was more than that and she realised it really was more than that and I was referred. Yes post menopausal women can experience less plump inner labia (and outer if it comes to that) and maybe they'll look a bit smaller, shrunken but NOT disappear off the face of the earth! They vanished practically in front of my eyes. Each time I looked in the mirror there was less to see. I really appreciate the input Sha, I'm just not convinced that's all
    • sha1271
      sha1271 ChrissyC

      Posted

      I totally understand. We know our bodies. I pushed and pushed until I found a dx because I knew I had LS. It does get frustrating to see it all disapear, big hugs and hope the progression stops for you.
    • ChrissyC
      ChrissyC sha1271

      Posted

      Thanks for that Sha and for the hugs. Hugs back at ya and wishing you well too
  • tomsbestfriend
    tomsbestfriend ChrissyC

    Posted

    Hello ChrissyC

    First of all big hugs to you. I felt like a freak when I was first diagnosed (my symptoms aren't the same as yours). I am 70 and single (by choice) and it's many years since I have wanted penetrative sex, so the changes in vulval architecture haven't bothered me. Quite by chance I was chatting with my 34 year old music teacher and it transpires that she has the same as you. This is also true for one of my close friends (aged 50) - all white, loss of architecture and no other symptoms. Once I got over feeling a freak I have chatted openly about having LS - it is just a skin  condition which happens to have occurred in a private place. With some people I have to keep repeating that it is not a disease and it is not contagious or infectious. I guess that people with very visible psoriasis must experience the same reactions that I have sometimes had.

    I was having biopsies earlier today (ouch!) and was talking to the doctor about fasting. She told me that the man who invented the 5:2 diet had auto-immune conditions which disappeared when he went on the diet. There's now some proper research (UCLA I think it is) about 3-4 day fasting and reduction in autoimmune disorders. So I am going to try that as of tomorrow.

    Once again - you're not a freak, what about trying the fasting to see if it slows down the progression of your symptoms?

    • suzanne00
      suzanne00 tomsbestfriend

      Posted

      Hi--I would love to get a follow-up on the fasting!  That's supposed to sort of be a reset button for positive changes in the body (and likely something we would have encountered through the millenia).  I'm also reading that lowering insulin levels with a low carb diet can achieve some similar changes as fasting. Let us know how you do!   
    • ChrissyC
      ChrissyC tomsbestfriend

      Posted

      I'm 55 and up to all this I was having a full and happy sex life with my husband of 30 years. This has completely changed my whole personality around a physical relationship and my whole life really because I'm just not me anymore. I'm very sad about it. Of course I know there's more to life than sex and priority is love and life and health but the change has been so sudden and dramatic I'm still reeling. I DO talk openly to spread the word to other women. I almost feel a freak on here because the focus is on flare ups and itching or cracking or soreness (understandably) and I don't have them so I can't join in the conversations or DO anything to help myself. I can only watch helplessly in the mirror as I change. It was lovely to hear of your age 50 friend sounding like me. That sounds weird - of course I wish for her she didn't have it. You know what I mean. Curiously I have already tried the 5:2 diet once for weight loss. I didn't stick at it, I'm poor at dieting but I will think about it again. Thank you for replying and for the hug. Hugs back to you especially for your your biopsies. I had one for my diagnosis so 'ouch' yes.
    • suzanne00
      suzanne00 ChrissyC

      Posted

      Hi Chrissy--You have a similar story as mine, too.  I wouldn't have known that I have LS if intercourse hadn't become suddenly very difficult and unpleasant.  I thought that it was the new changes of menopause (and so did my doctors) for about a year even though I am on bioidentical estrogen (applied to my vulva).  I now can see the white plaques all around in that figure 8 area that Dr. Goldstein says is common for women with LS.  I am hopeful that the steroid (just started this past week) will put this into remission before I have too many other physical changes.  My partner is understandably worried for our love life and so am I.  I hope that you are able to stop the progression of this.  --Suzanne
    • ChrissyC
      ChrissyC suzanne00

      Posted

      Hi Suzanne thanks for replying and for your wishes. I don't have any problems with my vagina at all at the moment and am still well lubricated. I don't seem to fit in with any one else. Not that I wish for additional symptoms of course but I do seem to be the odd one out. Lots of people on here have LOTS of success with steroid ointment relieving their discomforts and preventing physical change so I think you should be very positive and optimistic. I really wish you well.
    • suzanne00
      suzanne00 ChrissyC

      Posted

      Thanks for the good wishes, Chrissy.  So you have LS and disappearing areas? Would you be comfortable saying more about how that has impacted your sex life?  I think that you mentioned that there have been changes there.  Otherwise, no discomforts besides physical changes to the tissues?  Thanks for the clarification.  --Suzanne
    • ChrissyC
      ChrissyC suzanne00

      Posted

      To be honest its all in my head that I look so different to how I used to I just want to keep it all hidden which is not conducive to feeling sexy. I KNOW it's silly but as yet I haven't managed to overcome the embarrassment. So as I was always a flirty person who loved sex (I'm not embarrassed to say that) I now don't want to acknowledge that sex even exists. And so I've changed personality completely which then makes me sad that I'm just not me any more
    • suzanne00
      suzanne00 ChrissyC

      Posted

      Oh, I'm sorry to hear how hard that's been.  LS has such a terrible impact on our sex lives--which doesn't affect just us, but also our partners!  --Suzanne
    • ChrissyC
      ChrissyC suzanne00

      Posted

      Yes indeed. He's been wonderful and of course there is a lot more to 'us' than that but still... it's changed me, it's changed us, no question. I feel a bit embarrassed saying all this simply because I know there are a lot of people on here who wish they could have sex but their physical symptoms make it too difficult. I probably physically could and so people may well think me very silly especially as I miss it. So I haven't talked about it. Thank you
    • Roselee
      Roselee ChrissyC

      Posted

      Hugs for you Chrissy, I understand where you are coming from, I also I have lost some on my fun factor. I am though going to work on getting it back.

       

    • ChrissyC
      ChrissyC Roselee

      Posted

      Good for you! You're right of course - really wish you success with that. And again just thank you for the support. It really really helps. Maybe if I can feel even a little bit stronger with all your help I can decide to work on getting it back too.
    • suzanne00
      suzanne00 ChrissyC

      Posted

      As they say, "You go girl!" I fully intend to fight this thing and get my mojo back!  --Suzanne
    • sha1271
      sha1271 suzanne00

      Posted

      Agreed! Thankfully I have a loving understanding husband. He has sexual disfunction of his own and we both gave up on intercouse for years. This past year we both have been fighting back and are determined to get back what we once had. I can say that the more we try the better it gets, dont give up. I do still have those moments where I just dont feel sexy and want to avoid. For the most part I do still have sexual enjoyment. I feel I need to enjoy it while I still can. Good luck to all us.
    • annabel01635
      annabel01635 ChrissyC

      Posted

      Hi Chrissy, (and all you others with disappearing bits) I suffer the same way. So hard to understand how my clitoris has become hidden. I have been very doubtful it actually was LS because I had no symptoms other than the change in architecture. (or not much to speak of) I am concerned by my loss of sensation in the clitoral area. I thought if it was still there, i.e. underneath, it would be basically the same.  But am finding it harder to get sensation from it. Perhaps should think about a vibrator to help. Is this a solution? Don't really discuss it with my husband for fear of putting him off me! I don't discuss LS with anyone outside the forum, so this is a great lifeline. Annabel
    • Morrell1951
      Morrell1951 annabel01635

      Posted

      Hi Annabel,

      The period around menopause was when my clitoris got covered. Looking back, I had this feeling of being aroused for no reason – I'd be walking through a shopping mall and be overcome with the desire to buy a lacy push-up bra (not my style at all, normally). I hadn't been diagnosed and I never used a mirror except for the odd boil in the crook of my panty line. I believe now that as my labia minora 'zipped together over my clitoris, they put pressure on it which my libido interpreted as pleasant. At that point if I'd known, surger might have been an option, as long as I used the steroid ointment to keep it from re-sticking. Oh, well. I was already single again by then.

      The other thing was there was this tight band across my vagina below the clitoris, so I couldn't get that lovely smooth slide from inside out. Why didn't I ask questions about that?

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