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  3. Lichen Sclerosus

thank you thank you thank you

Posted , 8 users are following.

kay79190
kay79190

Thank you soooooo much ladies. have just spent the last 2 hours reading your posts. I was diagnosed yesterday with LS and have been in panic mode and unable to eat or think of anyhing else since. I feel soooo much better having read your posts and have ordered Borax on ebay and cant wait to get started. Thank you once aagin for being so open. Will keep you posted xx

2 likes, 11 replies

11 Replies

  • diana71766
    diana71766 kay79190

    Posted

    We care about you stay in touch. We will get through. God bless

  • Neldog
    Neldog kay79190

    Posted

    So, now you have a diagnosis -   I'm curios..  How long do you think you have had LS?     I was shocked to realise i have probably had it about 20 years, certainly by the time i got a diagnosis i had little left in the way of architecture and had been diagnosed so many times with thrush,   ( it wasn't) and various other ailments.......   Sex has been difficult for years but no one ever seemed to take any notice.

    i'm much much better since i took the plunge and bought borax.   All the itching has gone and i am even starting to see the start of my normal shape coming back.

    good luck with it all....   What has your doctor prescribed?       

    Xx.  N 

     

    • kay79190
      kay79190 Neldog

      Posted

      I think i have had

      it for Approx 1 year. My Dr was useless!! she gave me steroid cream and told me to come back in 2 weeks and she'll send me for a biopsy!! going to see a different Dr next week to get referal to a Gynacoogist.

    • micheline16004
      micheline16004 kay79190

      Posted

      Your story sounds similar to mine. I've had it for about a year. When I sent to see my GP, she prescribed Hydrocortisone 1%, the weakest steroid. She didn't even send me for a biopsy. She just said apply this twice a day and didn't even give me a follow-up. I'm also looking for another doctor.

  • sandra01720
    sandra01720 kay79190

    Posted

    Stick with this forum. I've found it so helpful. I was a mess after I was diagnosed. So anxious it was affecting my sleep. I actually find my LS relatively easy to manage since using tips mentioned on here plus using steroid at times too. I recently started very low gluten diet and again am experiencing more resolution of symptoms! I've had LS since I was a teen I believe (anal area for many years) and am 46 now. Eventually it had spread to the vulva area. sad. It is manageable for most of us.

    There's a lady on here that had a severe case and inspires me so much. She found answers and has had great improvements. She's quick to encourage and offer tips. Hang around!

  • mary09950
    mary09950 kay79190

    Posted

    Glad you found this support group for shared experiences and information. Just want to emphasize that treatment with the steroid Clobetasol is proven to help prevent any vulval cancer.

    Talk to your doctor for advise.

    The continuous moisturizing and maintenance (twice a week) treatment with Clobetasol ointment is my plan.

    The baking soda was helpful I think with inflammation. I tried the Borax but used too much. Not good feeling so be careful with it.

    • kay79190
      kay79190

      Posted

      I know this may sound a silly question but what coconut oil should i get? is it liquid form or the hard stuff?

       

  • Wero
    Wero kay79190

    Posted

    Hello Kay, so glad you have found this site. I am relatively new to the forum but already gained so much useful information. One thing that I would say however, is that it really highlights how different we are all treated depending upon where we live in the world, despite our similar experiences with the condition. We also all respond differently to different treatments , so never become despondant or frustrated there is always an alternative.

    I had no respose at all to Clob but do well on Betnovate. I have extensive fusing but have not yet tried Borax, I am in my second week of trying Sodium Bicarb, (so far no change) Some people are having to purchase their own dilators, I was given one by my Dermatology Nurse. I was so low when I first came here, but feel much stronger and focussed now, so Just keep positive whatever and stay in touch. And good luck.

  • mich88
    mich88 kay79190

    Posted

    I am also new to the group I just found out today that I have LS for sure it has helped to read your post i don't feel so alone so Thank you

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