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Liken

Updated 1y ago

Living with Lichen Sclerosis: Seeking Support and Advice

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

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Jcm13

2y

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

2y

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.
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Trishann

2y

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
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Blondie17432

2y

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

2y

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

2y

So I have struggled with figuring out how to live with it
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Blondie17432

2y

There are many lichen sclerosus pages on Facebook
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Blondie17432

2y

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

2y

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.
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Leahhhh

1y

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!!

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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