World Wide Lichen Sclerosus association

Posted , 4 users are following.

Not sure if this info is already on here somewhere but I recently discovered this association. May have helpful info. I assume it will be blocked initially, but hope it will eventually be made accessible.

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  • Posted

    Thank you very much ... '' the Doctor will NOT tell you '' list is what I have found out for myself through trial and error. Its nice to know that correct information is available for sufferers.

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  • Posted

    Thank you so much Beverly. Yes, I had heard quite a while back the use of steroids prevents cancer in LS. That's why I never dropped it completely for the natural way. What I was able to do is have it reduced from 3 times a week to twice a week. I'll try to go to once a week but may not be able to, but that's ok. I'm managing quite well so far.

    One thing the study you sent forgot to mention and it is very important is the amount of steroids you apply which makes a big difference. You are supposed to apply only a pea size amount. I fear for people who don't know this and apply a lot of it. I've never even applied a pea size rather more like a rice size.

    Thank you again.

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    • Posted

      I also apply a very small amount of the steroid (which is a weaker steroid than clob), never a pea size. I am using it twice a weak, sometimes three if I get what to me is a buzzing feeling. The LS has never caused an outer itch or even much discomfort. Had assumed anything I felt was due to atrophy until the LS diagnosis.

      The hormone cream (which I apply nearly every night) is what I would consider only a petite pea size. Even though I am still using a compounded estradiol cream with versabase (supposed to be less irritating than the brand name pharmaceuticals as it doesn't have preservatives) it still makes me a bit sore sometimes. I'm coming to the end of that tube and will be using Etsrace as I now have insurance that covers it (with a co-pay of course, but at least I'm not paying over $300).

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