Lichen Sclerosus: Any other women dealing with this disease?

I, too, have what looks like morphia but was biopsied as extra-genital LS. Mine is in “remission” with methotrexate but all the skin changes, what I call staining, remain. No new lesions.

Mine was biopsies as LS as well. I happy to hear your in remission, that’s wonderful.

Can LS cause your clitoris to shrink?

IS confirmed by biopsy. Cleared and controlled by Clobetasol cream .05%. No new lesions since treatment years ago. Bless my gyn.

@siosal is this something that you are experiencing? Have you discussed this with your doctor? What did they say? If you haven’t asked, you might want to, just to set your mind at ease. Can you call tomorrow or Monday and then let me know the answer?

It’s all fine. Thank you!

This is my first posting. I am suffering from this horrible lichen sclerosus and have tried clobetasol and two other corticosteriods over the past four months +- but have not seen any improvement. In fact, things seem to be getting worse. Because of that, along with the added drying, irritating side effects of these ointments, I've stopped using anything. I am at my wits end with this problem.

How long did it take to see improvement for those who used these standard steriods?

@alju Welcome to Mayo Clinic Connect. I’m glad that you found this group! There are several discussions that you may wish to check out on lichen sclerosis:
https://connect.mayoclinic.org/discussion/lichen-sclerosis-anyone/
https://connect.mayoclinic.org/discussion/dermatologist-vs-gynecologist-for-lichen-sclerosis/
https://connect.mayoclinic.org/discussion/lichen-sclerosis-4/
https://connect.mayoclinic.org/comment/676975/
This may be way too much information, but it’s helpful. Other members will see your post and join the discussion.
What kind of doctor is currently handling your case?

I have seen 2 ob/gyns and a dermatologist . I rejected the ob/gyn biopsy offers, the idea of any further added pain was too much to consider. But I may have to reconsider since there has been no improvement. Both gyns said that the steroids would NOT cause the bumps or lesions that have appeared and gotten worse. However, I've read the common side effects of one of the steriods are blisters, pimples, redness, itching, acne, just to name a few. Estrace cream has it's list of side effects too. So I am doubly frustrated thinking that they are both mistaken or just reluctant of admit such a possibility. I really don't know where to turn at this point.

@alju “you don’t know where to turn.” It sounds like the doctors were giving you good advice but you were just too worried and upset to hear them. A biopsy would be a good idea. How can the docs know what to treat unless they can really see it. Every woman who goes into their office is afraid. So just tell them that you are, too. They can probably give you some numbing cream to make it easier.
Any good medicine comes with side effects. Many of the side effects are experienced by only a few people. I was really worried about 1 side effect of an osteoporosis drug. My endocrinologist said that I had more chance of being hit by lightening than getting the side effect. So I listened to her, took the medicine, and have never had a problem!
You’ve seen a dermatologist. What did they say about the bumps and lesions?