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Hey I might have LS and I'm just it's 22

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hello74717
hello74717

I have this patch of Irritating hypopigmentation on my labia since three years and now they're planning to take a biopsy first they thought it's only eczema . I'm scared about biopsy cause the area is already so irritated and painful I have a feeling the  biopsy won't heal.

Those of you who had LS can you please help me is it treatable? I mean I know the itching subsides with creams and aloe honey etc but DOES THE PATCH EVER GO AWAY? Does the appearance ever go back to normal the way it was???? This thing is shattering my confidence . Please help. If anyone ever healed from it completely ie The appearance went back to normal then please tell me how and In what way  in what time?? Does anyone have an idea can I get a skin graft or something ? Will that help? Is there anyway of diagnosing LS without biopsy ???

0 likes, 16 replies

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  • Anonymous111
    Anonymous111 hello74717

    Posted

    LS often does get better.

    Usually LS can be diagnosed just on appearence. The purpose of the biopsy is to categorically rule out anything else.

    Have you tried steroid creams?

    • hello74717
      hello74717 Anonymous111

      Posted

      I have tried mild steroid creams as given by dermatologist for eczema . But it's not getting better the lesion increased in size. If anyone has had personally lichen and they completely resolved like the patch went away and skin was normal as surroundings please come forward and help me. It's like someone has given me a death sentence. I'm depressed beyond description.  

    • Guest
      Guest hello74717

      Posted

      I know this disease is scary but the symptoms can somewhat be controlled. The lesion like area on my labia minor cleared up with the use of estrogen directly on it. Specialist said it was atrophy and not the LS. I am past menopause age so some of irritation was from decreased estrogen but rest was LS. I have been able to keep symptoms under control with clobetasol and seeing my specialist twice a year. I have had some of the labia minor on the right "melt" away but so far rest of undercarriage is doing ok. The important  thing is to find the right doc and follow his/her instructions. The ladies on this forum have all gone thru and are still dealing with this disease. You must remember you are not alone. We are here for you. Please continue to read thru the posts. Many of the ladies have tried different things (borax,emuid cream etc) and have posted their results. Please keep faith, yes this is a terrible disease but it can be controlled to a certain degree and we must accept that as a positive.

    • hello74717
      hello74717 Guest

      Posted

      But I'm just 23! I haven't married yet I'm a complete virgin all my life was waiting for a marriage and everything and now how will anyone ever accept me ?? This way? No one would want a diseased woman 😭😭😭😭😭 please pray for me! 

    • Guest
      Guest hello74717

      Posted

      Yes, mine was diagnosed after biopsy. The first doc I went to treated me for yeast infection for about four months, but when white patches showed up a biopsy was done. As soon as I got the diagnosis I found a vulvar specialist and now go to her. As far as anyone accepting you, the right person will love you for who you are and please don't think of yourself as "diseased". This is an autoimmune disease that could affect anyone. It is not anything you did or didn't do that caused this disease. It is just something that can happen to anyone and we each have to find our own way t cope. I was extremely scared when I first got diagnosis but have learned that if I do what my specialist tells me to do it is manageable. As I said before everyone on this forum has gone through the scared phase but have managed to find ways to cope. I am sorry that you got this so young and yes, I will pray for you.

  • sandra01720
    sandra01720 hello74717

    Posted

    Initially, i was devastated about the LS diagnosis. But with time, I got perspective again. It is what it is. None of us want such a miserable condition but it can, in most cases, be managed acceptably.  I had extreme, crazy itching.  Steroids help control the itch but on this forum I received many tips that have made it very tolerable. I get sore occasionally and at times am frustrated with itching etc but mostly it's manageable. 

    I bath in baking soda or Borox. 

    Moisturize with emu oil, jojoba oil, olive oil... etc.   I find emuaid very very helpful. 

    Read through the threads and you should find encouragement and not feel alone in your pain. 

    My diet very much influences my health down there. Too much sugar, chocolate, clementines is asking for a flareup. 

    I went almost gluten free for awhile and my itching simply disappeared. 

    Stress and sweat are my enemies too. If I sweat, I need to rinse off almost immediately or I get itchy.  

    I will pray for you. Hang in there! This forum  helped me incredibly through my first panicky desperate stretch. 

    • hello74717
      hello74717 sandra01720

      Posted

      DOES your patch doesn't look abnormal at all now ? LIKe all skin is normal and same ? 

      I haven't had a biopsy yet. Gynaecologist is asking to get one done. Mine is increasing in size that's why otherwise it's just a pinkish patch nothing white. First they said it's eczema. On this forum I read a girl couldn't heal because of her biopsies she has extreme nerve pain since 8 months and can't have sex due to it. 

      That's why I don't want to get biopsy done. 

      I've been in itching remission on and off like eczema right?  comes and goes. But the patch itself like the appearance it never goes away! Yes itchiness sometimes goes away when I'm not stressed etc . But the appearance the pinkish patch on labia major is there since 3 years. Not going away. And the reason why I now sought help was because I wanted my normal appearance back. I thought I would get some plastic surgery or something done little did I know I have this LS surprise in store for me sad 

    • sandra01720
      sandra01720 hello74717

      Posted

      I sometimes have scarring around part of my clitorus and then I quickly get more diligent with steroid on it and it retreats again.  I think maybe my inner labia is shrinking very very slowly. 

      I had white crinkly skin but that resolved after steroid and natural treatment. Apparently the skin in my anal area looks crinkled like tissue paper. I can't see that but my gyno informed me of that. 

    • sandra01720
      sandra01720

      Posted

      I didn't ever have a biopsy.  Visual diagnosis. 

  • Guppy007
    Guppy007 hello74717

    Posted

    Hi, A competent specialist should be able to diagnose LS without a biopsy, especially as the symptoms of LS are so very clear.  Sometimes women will have a biopsy because their specialist is not as familiar with LS or the symptoms look VERY different from LS.  I had a visual diagnosis.

    LS can be managed, and there does appear to be a link between gluten and LS and so if you can try going GF you migh find that helps, especially for women that itch a lot.

    Thrush always brings on LS (the two go hand in hand) in my experience and so it is best to avoid too much sugary foods and beer.

    Once you are in a routine of maintaining your LS you will find it is not that terrible, and you will find that you will go into remission for months or even years.

    • hello74717
      hello74717

      Posted

      I have like a 2 inch long hypopigmented pinkish atrophied patch on labia majors that made it have a huge wrinkly fold that wasn't there before. It happened over 2 years. Anyway I can go back to normal ? sad 

    • hello74717
      hello74717 Guppy007

      Posted

      My itch controls when I'm stress free etc and I have remissions but what about the appareance of that pinkish patch with atrophy due to use of steroids? Does that thing ever revert?  Didn't yours go away after a while your appearance became perfectly normal?

    • Guppy007
      Guppy007 hello74717

      Posted

      I dont have the white plaques of skin that many women have, my Vjay looks normal and healthy but I have lost one side of my Labia minora and the other side looks like it is going too.  I am not worried about that anymore as it is what it is and I read recently that some women are born without their Labia Minora and it does not cause any problems, or impact their lives.

       

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