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Strange cause for celebration

Posted , 9 users are following.

margaret289
margaret289

Hi everyone!  Strangely, I feel like celebrating because, having been told that my 4 biopsies over 5 years all were negative for Lichen Sclerosus, I have at last had the condition confirmed by a gynaecologist who seems to know what he is talking about without a further biopsy (which I would have refused).  It may seem strange to celebrate, but at least now I am not being shown the door  by the medical profession, because nobody could understand what I needed and I feel that somebody with an understanding of what is going on is keeping an eye on things.   Once again I feel like a fully paid up member of this forum - hello!  :-)

 

6 likes, 21 replies

21 Replies

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  • hanny32508
    hanny32508 margaret289

    Posted

    Hello Margaret,

    Indeed a strange celebration.  But at least now you know what to do and how to battle LS.  Plus doctors will be willing to keep a watchful eye on the progress.  

    I hope that with treatment you will at least put a halt to the progressing of your LS.

    Wishing you well!

    • hanny32508
      hanny32508

      Posted

      And please let all of us here know about the questions you no doubt will have. We, the people on this forum, will most likely try to answer them to the best of our abilities, I'm sure.
  • Morrell1951
    Morrell1951 margaret289

    Posted

    That's as you say strangely good news. I don't have too extreme a case of LS, but a long one and I have zero doubt that the gynaecologist who diagnosed me on sight was correct, finally after forty years. We really don't need more trauma to our vulva triggering yet another flare-up. I guess there are cases where the symptoms are confusing, but yours shows that biopsies are often done when a knowledgeable eye is what's needed.
    • margaret289
      margaret289 Morrell1951

      Posted

      From what I read of your posts on various threads, I think that my experience of LS has been very similar to yours.

       

    • Morrell1951
      Morrell1951 margaret289

      Posted

      Interesting. Chrisy's like us, too. Serial marriages with messed-up sex. Hindsight is 20/20...
  • wendy14679
    wendy14679 margaret289

    Posted

    Congratulations - I think!!!  Welcome, officially!
    • margaret289
      margaret289 wendy14679

      Posted

      Thanks Wendy.  I have actually been using this forum for a while now, on and off, but when I was told I did not have LS by several different medics (Based on biopsy results) I thought I wasn't really dealing with the same thing as everybody else on here.  This meant that I couldn't be sure if the advice I was giving was sensible or if the advice I was receiving was appropriate to me.  That's quite an uncomfortable feeling sometimes.
  • carmarie
    carmarie margaret289

    Posted

    I find it unbelievable that it was not confirmed by biopsy. Is it a waste of time having a biopsy then as I think I might have to have one in the future. Pleased you have had a firm diagnosis Margaret. The condition might be mentally easier to manage now.

    Best wishes.

    • margaret289
      margaret289 carmarie

      Posted

      From what I understood, my new gynae said that it was obvious what I had was LS.  He also commented that every viewing sort of test (this include xrays and microscopic examination of any condition) is never 100% definitative - it is an interpretation of what the professional sees,; but when the results get back to the doctor or consultant, they say one thing or the other in black and white.  This makes sense to me.  However, he also said that if he saw ulceration or other sinister changes, he would biopsy to find out what was going on and whether different treatment were needed.  In a nutshell, he would not bother to biopsy just to confirm what he can see already.  For the first time, I feel confident that someone is actually helping me deal with this condition.
    • hanny32508
      hanny32508 margaret289

      Posted

      So good to hear.  From here on you can find a path to healing or at least coping with the condition.
    • Morrell1951
      Morrell1951 margaret289

      Posted

      Margaret, that's what I like to hear. Eyes for LS, biopsies for worse things.
    • suzanne00
      suzanne00 margaret289

      Posted

      Yay!  Sounds like you have a special doctor who thinks clearly!
    • margaret289
      margaret289

      Posted

      I wish there were a spell checker on this site.  I meant 'definitive'.
  • Amitka
    Amitka margaret289

    Posted

    I got the diagnosis without any biopsies.  I wonder why I was so lucky.  But in any case it was pretty obvious to me.  And I guess the diagnosis has done me no good at all since the only treatment I was given was the steroid cream (which I told them I was going to use v. v. v. sparingly because of its effect of thinning the skin) and a tub of petrol-based cream to use in the bath. I was already receiving thyroxin, which is considered to be another trigger for l.s. -- poor thyroid gland function. Still, I'm lucky that so far the effects have been light, although now I'm getting patches of what I think is psoriasis and time of itchiness all over my body.  This might be another effect of lichen sclerosis?  Or another or related auto-immune response.  Am I preaching to the knowledgeable?  You all know these things?
    • Morrell1951
      Morrell1951 Amitka

      Posted

      I've always had psoriasis and had undiagnosed LS since I was 22 – forty years. They seem to go hand-in-hand for me. Emotional upsets trigger both, but psoriasis more and the LS is more affected by diet (now that the friction and fluids of sex aren't irritating it).

      Maybe you should see a dermatologist. I stopped going many years ago because all they gave me was cortisone cream. Psoriasis clears when it's good and ready and leaves no scars. LS is very different, because every flare-up can cause more disfigurement. So, I've accepted I need to use the Dermovate forever. It needs to thin the LS area (it's thickened with dead cells and the inflammatory cells are down deep), so all we have to do is keep it off the healthy surrounding skin. I'm not at all concerned about side effects. I've had none from big jars of cortisone over many years, so I certainly don't expect any from 50 g. a year of clobetasol.

    • Barking
      Barking Morrell1951

      Posted

      Sound advice again Morrell! However I am totally confused re: use of clob. I have now seen another gyny who has said to use it daily/ nightly but I have been told in the past to use it sparingly. I have heard Dr Goldstein and it obviously makes a lot of sense to soak area before massaging it in but I am now in India for 3 months and been given 100 g of Mometasone Furoate by this second gyny. It seems an awful lot to use in the 3 months - suggestions please? How much and how often as I seem to be getting conflicting advice from the medics. I also don't know whether to use this in conjunction with Dermovate which I have also brought with me - suitcase was full of lotions + potions! I was full of questions when I visited the gyny but forgot to ask the obvious ones!
    • Morrell1951
      Morrell1951 Barking

      Posted

      Barking, I looked up Mometasone Furoate – it's a class 2 topical steroid. Dermovate is class 1 – the ultra potent for maximum penetration depth. You don't need both. And the prescriptions on all of them are standardized, so they read as if you're all flared up, recently diagnosed – so they always say to go through the frequent applications, blah, blah, blah. If you're in maintenaince, you may be down to two applications (small pea size) twice a week (I do Monday and Thursday so I don't lose track). I occasionally do an extra application night if I'm having a little flare-up.

      You'll get more answers online than a gynae will ever have time for anyway.

      India sounds exotic!

    • Barking
      Barking Morrell1951

      Posted

      Many thanks for prompt reply Morrell - very reassuring that I don't have to use both creams and yes, so far I am back to just 2 or 3 applications a week thank goodness. India is very exotic and also very hot (not surprisingly!) and I am being careful to keep the nether regions as comfortable as possible. We will be travelling for a couple of days next week and it won't be so easy but then it will be back to a more leisurely pace. Back in the UK in February when I can inspect myself more closely!
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