1. Community
  2. Women's health
  3. Lichen Sclerosus

Just Diagnosed Lichen Sclerosis

Posted , 54 users are following.

Suean
Suean

Hi Last week I had a biopsy and 3 days later it was confirmed I have Lichen Sclerosis. Ihad never heard of it until now,and I still feel as though I know nothing about it apart from the horror stories that I keep reading about on the internet. I feel so alone as I dont feel as though I can talk to anyone about it (apart from my husband, who is poorly with Multiple Myeloma so I really dont want to add to his worries) I know there is no cure, but is a normal life possible? will I always feel as though I am sitting on needles?

I feel I should be doing something to make people aware of the condition, does anyone else

Regards

Sue

3 likes, 136 replies

136 Replies

Next
  • dianthus
    dianthus

    Posted

    Hi suean, I know just how you feel . Seen Gp yesterday and now waiting to see Garny. Like you I know very little about my condition and feel scared . I hope we both get some positive news soon .
    • shezbut
      shezbut dianthus

      Posted

      I was just diagnosed with LS last week also, my mom had vulvar cancer and they think she had LS and let it go. I went to gyn because I thought I had a severe yeast infection, that is when they diagnosed me with LS. I am on a steroid cream. I am new also and scared!
    • Morrell1951
      Morrell1951 shezbut

      Posted

      Hi Shezbut,

      So glad you found us. You've posted on an old thread (one of the topics whizzing by at the top of the page, maybe), but please come to some of the ones that are active. We're finding out so much that we can do on top of the standard (necessary) potent steroid ointment. We use only a miniscule amount of it and LS skin (thick with mostly dead cells) needs thinning, so most of us have stopped worrying about side effects and are concentrating on lots of positive things we can do to improve the resluts of treatment. Now that you're under a Gyn's care, you're not going to get cancer there, so nothing to be scared about.

    • shezbut
      shezbut Morrell1951

      Posted

      Thank you so much for your comforting words! Where are the new threads jc should be posting to?
    • Morrell1951
      Morrell1951 shezbut

      Posted

      Just scroll to the top of this page until you see in orange text

      "Home  > Discussion Forums > Women's health > Lichen Sclerosus"

      Click Lichen Sclerosus

      At the top is the banner displaying moving topics. Ignore those and scroll down.

      The first discussion topic is New to LS – Start Here 'pinned' at the top so new users can get the basics right away. We all got a lot out of watching Dr. Goldstein's presentation. This is not one of those slick 'webinars' by TV 'doctors', he's just an American gynaecologist who specializes in vulvar problems and has made a special study of skin diseases there. It takes about an hour. The charts are a bit tricky because the animated pointer isn't pointing at the things he's naming, but one woman here paused it and did screen captures of them and printed them off to show her clinic's presonnel.

      Below that is the list of discussions in descending order of most recently active. In the top half-dozen discussions you'll meet all the women who are currently active here. We answer questions very promptly. It's incredibly good support, considering most of us don't feel we can talk about LS to almost anyone else.

      LS is turning out to be extremely wide-ranging in its aggressiveness, but one common factor is stress. We all seem to have 'interesting' histories and lots of ups & downs. We're all frustrated (including Dr. Goldstein) that potent steroid cream is all we have, but the more we share here, the more things we find we can do to supplement the standard treatment to reduce the number and severity of flares.

      If you're very young, and particularly worried about sex (most of us are past menopause because that's where LS usually strikes) you'll find a few discussions as you scroll down posted by a young woman specifically to find fellows.

      If you have a long list of auto-immune disorders and are trying to get to the bottom of the whole thing, you can try Alternative Medicine. (There's a link in the New to LS – Start Here topic.)

       

    • shezbut
      shezbut Morrell1951

      Posted

      Thank you so much for information!  I am remembering that I was diagnosed around 25 years yrs ago with skin lupus. I had a butterfly rash on my face. Dr. had me on steroids, and it has never come back. wondering if this could be any connection? What does everyone use for cleanser when it is inflamed
    • Morrell1951
      Morrell1951 shezbut

      Posted

      I use plain water. Many use Hydromol. We're all starting to think there are lots of connections. I was diagnosed with Herpes simplex II at age 22, which happen to be around the time LS symptoms started. Either I was misdiagnosed or the acute outbreak of herpes triggered LS. Another member here mentioned the identical history. I never would have thought about it, forty years on. Anyway, I've never had genital herpes again. I also have psoriasis, which is 'related', whatever that means.
    • ChicaNZ
      ChicaNZ Morrell1951

      Posted

      Me too re the herpes and age of diagnosis!  Have only just had the LS diagnosed at age 49 and the doctor seems to know very little.  I have to go back a week on Tuesday for a biopsy to confirm that it is LS.  

      I had a really bad time with what the doctor thought was thrush the year following my 2nd daughter's birth (age 40); this gradually subsided.

      Now age 49, menopausal, in a new stressful job, just after a really bad bout of IBS, I am having another really bad flare up. For the first time ever after years of similar symptoms on and off, a doctor has suggested it could be LS. After using baking soda baths and tea tree oil mixed with zinc & castor oil and making sure I have enough sleep, the flare up seems to be under control though not abating entirely.  I now have a cold too which I don't think helps!  

    • Morrell1951
      Morrell1951 ChicaNZ

      Posted

      Glad you found us Chica. Thrush and IBS don't surprise me at all. I've taken most of the sugar out of my diet, so I hope I've seen the last of yeast. And anything that gives me urgent, loose BMs (coffee and maybe also strong black tea) wreaks havoc on the skin around my anus. I've suspected for years that my mother's rheumatoid arthritis was set off by her IBS. At 86 she's found that coffee makes her 'go'.

      What form does this zinc take? Back in the seventies when I was briefly a hairdresser, we used some sort of zinc-based dandruff shampoo that made me want to scream – my hands were always cracked from psoriasis (another ailment than sometimes goes hand-in-hand with LS).

    • ChicaNZ
      ChicaNZ Morrell1951

      Posted

      The zinc and castor oil is sold as baby nappy cream here.  It is made of castor oil, arachis (?) oil, beeswax white, zinc oxide, vitamin A palmitate,cetostearyl alcohol.  It's really thick and lies on top of the skin.  I've tried food grade, 100% pure coconut oil instead today, mixing it with a few drops of tea tree (manuka) oil and I much prefer it.  It seems to be working fine as I'm just about symptom free - just a bit of tingling and tugging on a healing lesion - without the squelching.  My anus is heaps better too.  It's only one day so I'll keep you posted.

      My mother has rheumatoid arthritis too. 

      Many years ago I had shingles on the left side of my waist.  I've been told this area lies along the nerve that wraps around your back and goes to your groin.  When the left side of my waist aches it seems to be a pre-cursor to tingling where I get the worst lesion and the itching then starts.  It usually happens when I'm sick, run down or stressed.  Do you have anything like that?

      I cut out sugar at the beginning of this year with just the occasional relapse though I think I will get a diflucan prescription next doctor's visit as I often crash after eating.  I've also just started to cut down on gluten.  I don't really drink, but will miss real coffee so much if I have to go there.

    • Morrell1951
      Morrell1951 ChicaNZ

      Posted

      The shingles connection is interesting, as shingles is a herpes virus. I haven't seen anything about LS researchers exploring a connection with that virus. They're looking at the virus that causes Lyme disease.

      I had a few headaches after quitting cooffee, first down from two cups to one, then none. It's easy now.

    • hanny32508
      hanny32508 ChicaNZ

      Posted

      I've had the singles as well.  Twice even.  It's the herpes virus.  Never thought to connect that to LS.  My immunity was at a bottom low at the time.  
    • Magic0934
      Magic0934 Morrell1951

      Posted

      Must be updated site as scrolling to top of page does not hv links you directed, I hv recent diagnosis of LP on biopsy. Given LS info sheet by gyn. And looking for some valid info. Good discussions!
  • Spindles
    Spindles

    Posted

    I was diagnosed with LS about six months ago. I didn't have any of the usual symptoms, just redness but I know that some people can have a lot of soreness and/or itching so I suppose I am lucky. There has been some fusing which I have been told can't be reversed and I am hoping that it doesn't get to the stage when I start to have trouble passing water etc. I had a biopsy and was surprised that even after that the doctor said that "it's probably Lichen Sclerosis", I thought the biopsy would confirm it once and for all. Thankfully he also told me that there was nothing sinister going on but that I had to get myself checked by my GP once a year.

    Before I had the biopsy I was treating the redness with the Dermovate for several weeks but I found that it made the redness much worse. I have now been told to just use it when I have a flare up but, because I don't get any soreness I haven't put any on for a while. I don't let it worry me but I can see that if you have worse symptoms than I have got it would be more worrying. Sorry if this hasn't been much help but at least you know you're not alone in having LS.

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.