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

biopsy question

Posted , 8 users are following.

jared8423
jared8423

how progressed does this disease have to be to be diagnosed by biopsy? If it isn't bad enough are there enough skin changes to know that it's LS vs. things that may look similar?

0 likes, 14 replies

14 Replies

  • Okpeeps
    Okpeeps jared8423

    Posted

    Hi Jared. I’ve never had a biopsy. It was so bad at the beginning I couldn’t let any doctor touch me. GO referred me to a dermatologist that specialised in LS and he confirmed it. 

    I have posted on here a new thread last week but it has never come through. It was just something that has worked for me. I read on here or somewhere about viramin D capsules and magnesium capsules ... I was in major flare up after having winter flu bug. I was ready to try anything.  Within two days of taking one of each a day the itch has gone the flare up has disappeared and it’s kuch healthier down there. I never use soap down there and only wear cotton underwear. Drinking loads of water now too instead of too much coffee. I’m only saying it wirjed for me. It might not have the same result for everybody but I thought I’d share. 

    That’s a full week since I started these capsules and the difference is night and day. 

    • brenda12750
      brenda12750 Okpeeps

      Posted

      I don't know if this will work for you or not. But I have been washing down there with Dial soap and it really has helped with the redness and also the itching. So you can try this and see if it helps you. I have been A lot better since I have been using it.

  • george_32756
    george_32756 jared8423

    Posted

    I would refuse it. It was plain to see it’s what I have. A dermatologist confirmed it for so saved me having to have it. I’m losing mine at a rapid rate and didn’t want them to take more off when I haven’t got much to give away. Plus everyone I ever heard of having one said it was the most painful thing ever. I’m already in enough pain and couldn’t bare to have more . Xxx
  • susan39248
    susan39248 jared8423

    Posted

    Hi Jared, from what i can gather from my experience, the tell tale sign is the whitening of the skin around the vulval area and the perineum. My GP diagnosed based on that alone and she categorically said a biopsy wasn't needed.

    Interesting that Vitamin D and magnesium are helping you OKpeeps.  It is common for people with thyroid problems ( lots of LS patients are also hypothyroid)  to have inadequate vit d and I personally supplement vit d and Magnesium but not consistently so I can't really comment on whether they have helped or not. I am not medically trained but i have read that vit d acts like a hormone in the body.

    People talk about stress making it worse, which is a condition where you have raised cortisol. Excess cortisol, especially if it goes on a long time, can impact your other hormones by reducing the amount of DHEA which your body makes. This situation is worse once you reach menopause. It also has an effect on insulin which I can't call to mind completely.  I feel sure that in the future they will discover that hormone imbalance is a factor in LS.  

    • jared8423
      jared8423 susan39248

      Posted

      Im a circumcised male all i have is white spots and lines... No symptoms der
    • jared8423
      jared8423 susan39248

      Posted

      Derm said vitiligo but ive never seen vitiligo that looks like this so a biopsy is scheduled...not sure what to do its hard to just let something spread when idk what it is
    • charlotte95599
      charlotte95599 jared8423

      Posted

      well if there is no other symptoms I wouldnt worry about it. A biopsy will be painful and possibly leave a scar. It probably is Vitiligo. LS usually comes with symptoms, though not sure how it effects males so much
  • charlotte95599
    charlotte95599 jared8423

    Posted

    Well Ive had a total of 4 now. My original OBGYN did the 1st 2 tryi g to diagnose. Both came back with no answers. I ended up going to the OBGYN i now use becsuse they offer Mona Lisa and i had no idea what was going on just thought was hormonal. She did another biopsy that diagnosed  LS. After almost a year she wanted to do another because it was still looking bad and they were concerned about cancer. The cancer risk is one reason they will want to continue biopsies now and then. But for diagnosis as my stopry shows doesnt alway give the answer or the 1st Dr i had just didnt get the biopsy in correct place? I didnt find them any more painful than the LS was already
    • susan39248
      susan39248 charlotte95599

      Posted

      Yes, I've heard the the location is critical and also the Dr :-)  Are you in the states? Do you have the white areas of skin? I am about to see a specialist here in UK, privately, who specialises in vulval skin conditions so I hope to get some more info from her about it all.  My GP, who is also my Gynae Dr has confused the hell out of me. As I am postmenopause and on blood thinners i can't go down the hormone route, illogical though it is. 

      well all the best with it all :-)

    • charlotte95599
      charlotte95599 susan39248

      Posted

      Susan

      Yes I am in the states. I never had the white patches ever so maybe thats why the 1st Dr was confused. I had never heard of LS at that time so i had no idea what was going on.  The Dr thought it was Herpes because i had these lesions all over and i was red and inflamed all over. I now think I just had a Dr that was incompetant for the issue.  Since seeing my nee Doc and doing Mona Lisa i think its getting under control besides this place and all the good advise to try. 

    • susan39248
      susan39248 charlotte95599

      Posted

      So I saw a dermotologist, who specialises in vulval conditions, privately ( i.e. I paid cash, for those in the States) and she has told me some interesting things today.

      Firstly, it is recommended that a biopsy is done before treatment with steroids commences because the LS 'melts' once you get the strong stuff on it and then it makes the diagnosis more difficult. I can't remember what she said verbatim but that was the gist of it and her word, 'melts'.

      Secondly, there is a connection to estrogen imbalance and I believe she said, lack of estrogen but she may have been keeping her explanation simple. To me, this means looking at hormone imbalance should be part of the diagnostic procedure, which it isn't, probably because its simple to just get us to put steroids on our bits, for  the rest of our lives. Also, in my view, its a bit like the thyroid issue, they are not going to do anything different for you if you have Hashimoto's anti-bodies so they don't bother testing for it. In fact, they don't test for the important things at all because again, they are not going to prescribe anything different, although there are alternatives that suit a lot of people better than the standard drug. I think this generalises across the board in the Medical profession.

      So, the good news, for me is the dermatologist thinks the diagnosis was incorrect, there are no signs I have had LS at all and that for my age, everything looks very good. New diagnosis, eczema- which I have had for years on other parts of my body. I am so relieved that I can stop worrying about this now but will continue to try and support the LS community if appropriate. 

      If there is anyone in the UK who would like the Dr's name, please pm me. Best £220 I have ever spent.

      Best wishes :-)

       

    • wumi_62775
      wumi_62775 susan39248

      Posted

      Thanks Susan, 

      Please can you advise your dermatologists name and business address. Thanks. I just got diagnosed by the GP  yesterday and I'm yet to see a specialist.

  • Guppy007
    Guppy007 jared8423

    Posted

    Hi there,

    If you go to your regular doctor he won't have a clue and will send you for a biopsy. 

    If you go to a Gynaecologist it's likely he won't have a clue either and will send you for a biopsy. 

    If you go to a dermatologist it is likely they won't have a clue and will do a biopsy. 

    If you go to a vulva clinic and see a professional he will be able to tell at a glance more often than not that you have LS and give you a visual diagnosis.  Most women have the telltale white plaques of skin, and if not they have a long list of other ailments all related to LS, like sores, tiny cuts, rashes, problems with the clitoris itching, loss of labia minora, fusing... the list is endless.  

    There is actually something called the 'Koebner phenomenon' which means cutting into the skin for biopsies actually can make things much much worse.

    I feel annoyed when I read how trusting women are around doctors that often have less idea then we do and therefore immediately suggest a biopsy.

    • jared8423
      jared8423 Guppy007

      Posted

      Im a male just dont know if its lichen or vitiligo dermatologist is who im seeing
Back to top

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.