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Newly diagnosed and confused over treatment for lichen sclerosus

Posted by ronag @ronag, Jan 24, 2023

I've been diagnosed with lichen sclerosus. I have questions as to what is the best treatment: which steroid and at what dosage. My gynecologist initially prescribed mometasone cream 0.1% twice a week. This didn't really control the itching. My dermatologist is recommending clobetasol ointment 0.05% once a day for 2 months, followed by twice weekly forever. Itching, while not completely gone, is certainly more controlled after a week's treatment with the clobetasol. However, I'm a bit concerned over using it daily for 2 months. Can you please share what's worked for you? Can I expect to be using a steroid for life? To throw into the mix--I have long covid. Thank you for any help in navigating this.

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andwho | @andwho | Feb 11 3:07pm
In reply to @2thfairy "@andwho Yes, I have had many lesions that left scarring that actually closed my vulva to..." + (show)
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@andwho
Yes, I have had many lesions that left scarring that actually closed my vulva to my urethra, thus the need for laser surgery to evaporate the scars so urination was free. The burning when urine hits those lesions can be excruciating, and we’ve all experienced it. I recommend placing ozonated coconut oil, emu oil, or even Aquaphor over the lesions before you urinate to keep burning away.
Also a frozen bottle of water against your vulva for several minutes provides great temporary relief from lesions. I usually do that lying in bed.
Hugs to you.

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@2thfairy
How long do the lesions last? How long did yours last and what did you use on them?
Is the clobetasol supposed to help lesions? Not helping mine!
Any advise?

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maggiemae1961 | @maggiemae1961 | Jun 28 8:26am

I was diagnosed with lc but not sure if it is correct. I have no symptoms after 3 days on medication and have now started to bleed am 65 . Should I ask for a biopsy to make sure.

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Becky, Volunteer Mentor | @becsbuddy | Jun 28 9:16pm
In reply to @maggiemae1961 "I was diagnosed with lc but not sure if it is correct. I have no symptoms..." + (show)
Profile picture for maggiemae1961 @maggiemae1961

I was diagnosed with lc but not sure if it is correct. I have no symptoms after 3 days on medication and have now started to bleed am 65 . Should I ask for a biopsy to make sure.

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@maggiemae1961 Can you tell us what 1c stands for?

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grandmira | @grandmira | Jun 29 9:08am

My wife was on it for 2 years, however useage was as needed that is during flareups then once a week. She hasn’t had an issue for several months after following that regiment.

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