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Lichen sclerosus Clitoris disappearing

Posted , 24 users are following.

andi6406
andi6406

Hi, have been diagnosed with lichen sclerosus for a few years. The mad itching has stopped and I though it all better but to my horror, my labia minora and clitoris have practically disappeared. i know some folk have said the parts have fused rather than shrunk. Is this true even of the clitoris? I can't see how it can have fused?? There seems to be a lot less flesh there. Am thinking to use an oestrogen cream to plump it up. It also feels sore in the area after orgasm.

Any advice? Much appreciated

0 likes, 26 replies

26 Replies

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  • HesterBell
    HesterBell andi6406

    Edited

    It's an interesting article about fusing, but it doesn't explain how it can happen so quickly and, more importantly, how the fusing can occur with no symptoms of inflammation or irritation of the labial tissue. I had no symptoms at all but my labia have fused completely over my clitoris. Does anyone have any idea how this process can occur in such a hidden manner?

  • livingwithls
    livingwithls andi6406

    Posted

    Hi, completely new here. So excited to find this forum. I’ve had lichen Sclerosus for about 5 years. See a dermatologist with an interest in vulval disorders. Use clobetasol cream, once a week for maintenance, but daily when a flare up.  Noticing my labia minora is virtually all fused.  

    Currently, and the reason for googling support groups is that my cliteral area is stingy/itchy all the time at the moment. It’s like my hood is disappearing. I’m concerned this is going to be the norm and I can’t handle it. I’m putting clobetasol on daily on the cliterus at the moment, hoping it helps. Any ideas? Currently my sex life is fine (well it was pre hysterectomy 6 weeks ago, just waiting for clearance to restart), and I don’t want to lose this yet (if at all). I’m 42. 

    • Guppy007
      Guppy007 livingwithls

      Posted

      Hi there, try putting the Clob cream on twice a day for about a week to ten days in that area and hopefully that should do the trick.  When I have problems it is usually in that area and its horrible..thank goodness the clob cream does the job! 

      Quite a few of us have lost our labia minora and I always say that whilst it is upsetting  there are worst things, and some women are actually born without their labia minora and they do fine.  Remember to use dilators regularly which keeps things open as LS wants to shrink and reduce, and the dilators stop that from happening.  

  • pat_72618
    pat_72618 andi6406

    Posted

    Hi, I have been having the same problem (clitoris and labia minora disappearing) but today I checked it and it's so weird, but I think that the clitoris is reappearing.  Before it almost seemed like it was just gone but now it almost looks like it is emerging from under the fused part.  I haven't been putting anything new on it that I can think of, except to resume using my Terrasil (but that is for secondary infection).  The only new habit for me is eating and drinking copious amounts of buttermilk and organic cultured cottage cheese.  As I'm writing this, I'm also realizing that I started taking a vitamin D supplement this month. (The one i'm using is a liposomal Vit D supplement).  I read somewhere else on this forum that some people had success with vitamin D and acidophilus.... I think the buttermilk and cottage cheese have lactobacillus.  On the other hand, I still have the itch and so honestly, I don't know what's going on.  But I just thought I'd mention it because  several people have also mentioned that they had to quit dairy.  I am lactose intolerant and dairy give me sebborrheic dermatitis... but with the buttermilk and cultured cottage cheese I don't have a problem.  Since I have osteoporosis, I am going for it.  So basically I don't have any explanation but I thought maybe for some of us, the clitoris isn't gone but is hiding under the scar tissue.  Hope so!

    • 101reebok
      101reebok pat_72618

      Posted

      Stop eating all yeast, it took a couple of weeks but it stopped my itch. The relive is an amazing feeling. I’ve done a chat on it 😃

  • chris90983
    chris90983 andi6406

    Posted

    Labor for 4 years no labor or sign of clitoris having a current flare up just by the way crying doesn’t do anything except give me a headache
  • jennifer74029
    jennifer74029 andi6406

    Posted

    Some body please help me. I have severe itching and dryness. It's the vulva, anus and clitoris. I have been to the doctor for two years and they can't find what's wrong. I have gone to a GYN and he said I don't have LS but no one will test me for it I have talked to my doctor and she said it's something wrong with my nerves. I don't even have a anal twitch please I am desperate for help

    • Guppy007
      Guppy007 jennifer74029

      Posted

      Hi Jennifer, I would demand to be tested for LS. Not everybody has the obvious tell-tale signs (white plaques of skin) of LS and so you will have to insist on it because it sounds from your description that you have it.  Your best bet though is to find a Vulva clinic and go there, even if it means a journey.  Many doctors are clueless re LS but at a Vulva clinic you will find people that know about it.
    • 101reebok
      101reebok jennifer74029

      Posted

      Stop eating all yeast, it took a couple of weeks but it stopped my itch. The relive is an amazing feeling. I’ve done a chat on it 😃

  • MrsMartin
    MrsMartin andi6406

    Posted

    Hello, i am new to this community but am so grateful to have found it. about two months ago i began oral lichen planus symptoms, and now in my vulva/clit area. i have been using steroid creams, and it seems in the last three days that my entire clitoral hood has vanished. i have extreme it itchjng and pain and have gathered to try coconut oil to relieve pain and baking soda soaks. but i am 29 and so scared for my future. my gyno and dermatologist only offer steroids and no actual help. has anyone experienced this with oral lichen planus also? its completly taken over my mouth, lips, and now vagina and my selfesteem is next to none. ill take any advice i can get.

  • joyce98780
    joyce98780 andi6406

    Posted

    Do you need a prescription for the cream? If not, are there different strengths?

    I currently have been using an OTC cream called Emuaide, of which I had gotten the best results, so far. Due to a sinus infection, I was given a strong antibiotic which led to a serious yeast infection. Since, I have been unable to control the LS. I am feeling desperate!

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