Does Lichen Sclerosus always hurt? Had since I was 18!

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I'm 31 years and had itchy perineum since I was 18 (right after my first son) wasn't diagnosed with LS till I was 26 and put on that steroid cream which worked until recently, I feel like I've become allergic to that stuff and gives me redness all over the vagina.

I have never experienced pain with LS, just an unbearable itch in the perineum that would lead to the lips sometimes and I could literally scratch it till it bleeds and it still wouldn't hurt! Wtf! Does anyone else experience this? When I scratch it feels rather good and soothing. But I know I shouldn't as it could tear away at the soft tissue but that's how unbearable it is.

Sometimes I feel like I'm going crazy and sometimes the itch would hit me while I am out in public and feel I have to find a washroom a-sap just to relieve myself.

Everything else is good though? I can have sex just fine with no pain. And the appearance is fine other than some very faint white patch on the perineum. I'm really scared that my LS could worsen in the future. I've googled pictures of worst cases and it makes me want to 😭😭😭😭

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9 Replies

  • Posted

    Talk with your Gyn about switching from a steroid ointment to Elidel or Protopic. It's not a steroid but helps manage LS symptoms. Also, talk with your MD about the Mona Lisa Touch procedure to help improve symptoms and tissue health. I feel your frustration. I am finishing the last few sessions on the Mona Lisa and my quality of life is improving. Research the medicine and Mona Lisa.

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    • Posted

      Thank you! I knew there had to be something else than steroid cream. I will mention this to my doc!!
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  • Posted

    I also recommend the Mona Lisa. I had my first treatment over a year ago and I have to say it's been the best year of my life. Well best in the last 16 years since my first outbreak. I joke and say I bought myself a new who who for Christmas.

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  • Posted

    Hi Janelle,

    Soak in a tub with 1/3 cup of baking soda, and your itching will dissappear very quickly.  Also, read the thread "An experiment with Borax". There is a ton of excellent info on this site, so take your time and read through it all.  Many great women have contributed their tips and insights.  It's been a godsend for me.

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  • Posted

    It is known that globetasol has to be used with longer and longer interfalls or it will no longer be affective.  Also, it is important that you only apply in very thin layers and only on the affected area's.  When applied on healthy skin it reddens the skin.

    ?For the itching I would recommend baking soda and borax baths and rinses.  Already mentioned - look at the discussion "An experiment with borax". 

    ?I hope you will soon feel more in control of this debilitating disease.

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  • Posted

    This sounds just like me. No pain just itching. I find

    I have to go back to using the steroid cream every

    Day for about a week to clear up my itch. I don't know why it always comes back but I am starting

    To think maybe I have something else cuz what

    People describe on here doesn't seem what I have.

    Just terrible itching!

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  • Posted

    As was mentioned, Please read the thread "an experiment with Borax"! It was an absolute life saver for me! All of my itching, biting, burning stopped. and as long as I use the saturated solution and no the baths I have no problem at all! Baking soda also works wonders too!

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  • Posted

    As was mentioned, Please read the thread "an experiment with Borax"! It was an absolute life saver for me! All of my itching, biting, burning stopped. and as long as I use the saturated solution and no the baths I have no problem at all! Baking soda also works wonders too!

    Report

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