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looking for any new advise or info

Posted , 9 users are following.

sha1271
sha1271

Hi,

I was diagnosed with LS in 2004, a year after having my second child at the age of 31.  I noticed itching and sores and immediately started looking up info.  thought it may be LS so went to a free clinic to a dermatologist who diagnosed me. Ive been using Clobetasol treatment ever since.  Using it twice a week.   I live in the US and have only found disscussion forums for LS for UK.   I have tried to find Aqueous cream but not found it and have tried other creams and just gave up.   Symptoms have not been too unbearable but do get worse near and on my period.  Drs are not the most helpful.  Sex was not too much of an issue as my husband had ED issues.  For the past year he has been taking testoerone and his ED issues are getting better so now we are having more intercourse.   For a while it seemed the more sex we had the less symptoms of my LS I would have.  But that was short lived.  I experience dryness so use lubricant but still experience irritation after ward.  I just recently heard about using coconut oil as lubricant.  Any one else try it or have other recommendations. 

Thank you

1 like, 40 replies

40 Replies

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  • annabel01635
    annabel01635 sha1271

    Posted

    Hi, 

    Interesting that it is hard to find US forums for LS.  On keeping the area lubricated, I bought a large tub of Epaderm on the internet. It is rather thick and opaque but unlike an oil it sits where you put it, is a good barrier, and in the bath it kind of melts a little in the water and is nice and cleansing. I will be decanting it into a small tub as I am going horse riding for a weekend (!) Symptoms are under control at the moment with using Clobesadol about twice a week. Am most bothered by the loss of architecture... ah well...could be worse...

    • Morrell1951
      Morrell1951 annabel01635

      Posted

      Hi Annabel,

      I read the 'about' page on this website the other day. Two doctors started it and they merged it with a company that makes information software for doctors. So, unlike a lot of forums, it's not just something started up by a sufferer. It's really well-managed, with a bunch of specialized developers. I don't think it even slightly pays for itself with the ads you see at the bottom. We can't post links, so there's no incentive for trolls and spammers to mess it up. It's pretty special and although it's based in the UK, there are lots of us in North America and Australia.

    • sha1271
      sha1271 annabel01635

      Posted

      I will have to look up the Epiderm. Can never find anything in the stores so it looks like I will shop online. Eucerin or aquaphor is what I find in stores but have not seen those mentioned on forums. Yes I too was bothered by the loss of architecture but im ok with it as long as I can keep from losing any more.
    • anna80050
      anna80050 sha1271

      Posted

      i think epiderm is in the UK??

      why do we get the " loss of architecture??"

    • sha1271
      sha1271 anna80050

      Posted

      I believe when the skin thins or tears, in the healing process the skin of the inner labia and hood fuse into the vulva area.  Not positive on that exactly. I do know once I finished the first round of treatment with clobetasol it stopped and its stayed the same over the past ten years. 

  • Morrell1951
    Morrell1951 sha1271

    Posted

    Somebody said it well earlier this week. Our body thinks our 'fun centre' is a wound it needs to heal. The raw flesh is sticky, so any parts that can contact each other can fuse together. Repeated tears create scar tissue. It seems the white patches are sort of faulty cells or half-dead, like a blister.
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