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Lichen sclerosis worries

Posted , 4 users are following.

Guest
Guest

I was diagnosed almost 3 years ago with LS. It was struggle at first as first gyn I went to was treating me for fungal rash. I only had a lot of redness and no itching so he didn't think it was LS. Took three months to finally have biopsy and get results, by then I was looking for new gyn. A friend suggested I go to a vulvar specialist and thankfully I did. I started seeing her Dec. 2015 and with her help and using clobetasol ointment I have thankfully been able to keep it under control. I was quite happy with that until I read an article that said 4 years is longest it has ever been controlled. Is there anyone out there who has had been able to keep it under control longer then that? I am so happy to have found this support group as no one I know has this and most people have never heard it (of course I had never heard of it either until I was diagnosed.)! I am in USA and do not think we have any support groups for this, at least none I could find. Sorry this is so long but my first time here and guess I had lot to say😀

0 likes, 6 replies

6 Replies

  • cheryl33619
    cheryl33619 Guest

    Posted

    I was diagnosed in April and I have attacked LS aggressively my case was mild only itching and a little bit of burning I changed my diet and went gluten-free sugar-free and dairy-free and then I made an appointment for Mona Lisa touch after my first CO2 laser with MLT I totally went into remission I have no symptoms I just had my second MLT and I will continue with about 3 to 5 whatever the doctor thinks I have never taken clob and I do not believe in steroids on private parts if I were you I would look into MLT I wish you lots of luck I have only gone the holistic route and that is just better for me all the way around
    • Guest
      Guest cheryl33619

      Posted

      I am going to check further into diet. My specialist never talked to me about diet. I am not sure what MLT is but I am going online to look it up. Thank you for the info.
  • odiee
    odiee Guest

    Posted

    I am in the USA as well diagnosed in March of this year. There are a couple support groups on FBtoo that are really good. 
    • Guest
      Guest odiee

      Posted

      Thank you. I will look into those. This support group is so helpful to me. Not many people know about LS and at times I felt like I was the only one with it! But this group showed me there are others out there too and now I have a place to share things and others will know what I am talking about. I cope fairly well with this but I feel so much better now knowing there are others who understand.
  • K.G
    K.G Guest

    Posted

    Hey! 

    I was diagnosed with LS when I was 20 and was in remission for NINE YEARS! A few months ago I started feeling symptoms and went immeadiatly to an LS specialist in DC, where I live. I've been alternating with clob and a hormonal compound a pharmacist made that has both estrogen and testosterone. I'm still not totally symptom free after 4 weeks of treatment, but I'm getting there. Still have a few bad days here and there. I'm keeping a journal of my symptoms everyday as well as what I eat for the next 4 weeks before my follow up appointment to see if there are any patterns. But yes- remission is possible for long periods of time. 😊

    • Guest
      Guest K.G

      Posted

      Thank you for easing some of my worry! I guess I am just a worry wart! I hope your symptoms resolve. Keeping a journal is a good idea. I had not really thought of the association of diet and LS symptoms, but now I will discuss this with my doc on next visit. Thanks again for the info.
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