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741d

I have lichen sclerosis and I have been told there is no cure. It seems to be getting worse. I have also read that this is a rare disease and I would love to meet others that could share their story

Top reply
    • Leahhhh

      456d

      I commented on this 8 months ago, just following up again. Definitely went through hell from then till now with trying so many different things. I recently went into remission after using Betamethasone. Remission is possible, for me there’s now no evidence of disease. Keep your head up you’ve got this!!

    • Leahhhh

      456d

      I commented on this 8 months ago, just following up again. Definitely went through hell from then till now with trying so many different things. I recently went into remission after using Betamethasone. Remission is possible, for me there’s now no evidence of disease. Keep your head up you’ve got this!!

    • Leahhhh

      721d

      Just know that there are more then one type of steroid cream if one doesn’t work for you. I also had better luck with a dermatologist then a gynecologist. I’ve seen many gynecologist but none of them knew as much as the dermatologist.

    • Blondie17432

      726d

      Try Tacrolimis rather than a steroid? Steroids set me on fire and make me worse

    • Blondie17432

      726d

      There are many lichen sclerosus pages on Facebook

    • Trishann

      732d

      So I have struggled with figuring out how to live with it

    • Trishann

      732d

      I tried the steroids once and I had a bit of a reaction to it and my Klitorius quadrupled in size

    • Trishann

      732d

      Some things that I find helpful that I’ve read about are to not wear underwear whenever possible. Mainly at night time. Sometimes a warm washcloth helps with the itching and irritation

      • Blondie17432

        726d

        @Trishann cool is recommended. Also non soap cleansers like EUCERIN Calming, Non Soap Cleanser

    • Trishann

      732d

      I have had it for about seven or eight years. I was very frustrated that my doctor didn’t diagnose me. She’s down there every six months and didn’t say anything about the change in my skin color. I’ve diagnosed myself.

    • Jcm13

      740d

      From what I’ve read it’s not uncommon. It’s an autoimmune disorder. See a dermo or ob/gyn for help.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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