Can anyone provide their care plan for lichen sclerosus?

@rose66 Welcome to Mayo Clinic Connect! We’re glad you found us! You might want to let your PCP know right away. You could have a bad urinary system infection and should have it checked out. Can you call first thing tomorrow?

Welcome to this group. I can understand your concerns. I've found it very helpful having a group of peers with whom to discuss issues. I was diagnosed 2 years ago. Initially I was using the clobetasol daily. I'm now on the twice a week regimen and, according to my doctor (an OB/GYN), am in remission. Before applying I soak the area to soften the skin and allow for better absorption of the ointment (not cream). I was told to use a pea-sized amount of the ointment. I spend a couple of minutes gently rubbing it in. The doctor also put me on an estrogen cream twice weekly. She was never very specific in any of her instructions to me, but I've found a lot of helpful information and assistance through the Lichen Sclerosis Support Network (LSSN). Good luck with both the LS and your urinary issues.

Thank you for responding, I sent a note to urology this morning.
Dawn

@ronag @rose66 I used Clobetasol ointment daily when first diagnosed too, and now use it only when I have a flare.

@ronag You are right … Clobetasol ointment works better on me too than cream or gel for lichen sclerosis - although for oral lichen planus I prefer a gel (not cream or ointment). I use Lyderm gel for that.

By the way, I just came across this recall notice for Taro-Clobetasol:
https://www.drugs.com/fda/taro-pharmaceuticals-issues-voluntary-nationwide-recall-clobetasol-propionate-ointment-usp-0-05-60-14500.html

It took my doctor 6 months of constant pain to send me to a dermtologist to get my diagnoses of lichen sclerosis. I was prescribed Dermovate Cream to apply nightly for a few weeks and thereafter given estrogen cream nightly for a couple of weeks then twice weekly to remain on as a maintenance to prevent a reoccurance. I did not have any problems for two years. Then I decided to stop the estrogen cream but the lichen sclerosis symptoms returned so i quickly started on estrogen again. i haven't had any further problems.

Thankfully, my LS got diagnosed pretty early. I barely had any itching, but my OB/GYN noticed it during a standard checkup. She asked if I had any symptoms and then double checked with a dermatologist on the spot. I left that appointment with a prescription for clobetasol.

The most annoying part of it was dealing with my pharmacy. They're usually great, but they were concerned that I had a prescription for a topical steroid ointment with a pretty frequent application schedule. It got to the point where one of them asked what I was treating, which is none of their business. I told them to contact my OB/GYN if they had any questions and to give me my medication.

Since I have other autoimmune disorders, I know the value of community and the value of research. I found a video by Dr. Jill Krapf: https://youtu.be/nvfzzuMPGm0?si=qi7sPDAQ4Vl9sw1x In it, she explains LS and how to apply the ointment. I followed her directions pretty closely and had quarterly appointments with my OB/GYN team.

It's almost three or so years in, and I'm pretty much in remission. I just have to apply clobetasol ointment and triamcinolone cream a couple times a week now. I apply the triamcinolone around my perineum and rear. They noticed the clobetasol was too potent for that area of skin over time.

I don't think comparing is all that effective because a lot depends on when you were diagnosed, which is why I'm happy my team caught it early and started treating me right away. Based on their comments, I have very few changes, which is a relief because auto-immune disorders like to run in packs. Once you get one, others show up.