Newly diagnosed and confused over treatment for lichen sclerosus

My dermatologist suggests using it on the weekend, easy to remember she said, so 2x week for maintenance.
a pea size, massage it in.

I'm 72 and have had LS (diagnosed) for more than 10 years with my inner labia significantly gone. I moved and saw a new GYN. She did a 2 punch labia biopsy and it came back negative for LS, so she dismissed it entirely even though I was having a "flare" of swelling and itching. I gave up on her and went to a dermatologist. She is a LS specialist at a Medical teaching hospital. She acknowledged that frequent Clobetasol (ointment) use thins the tissue, but she felt that by not reducing the inflammation put me in greater danger. So, I have been on twice a day usage for a month to reduce the itch and inflammation. Then she wanted me to switch to tacrolimus daily. My insurance won't cover the $900 cost of that ointment, so I now try to use the Clobetasol sparingly. I think my stress incontinence and pad usage contribute to the problem. Am I alone with this? I have tried Vaseline; it was useless. Anyone else using Tacrolimus with success? I have always wondered if my hysterectomy at age 40 for severe endometriosis was in anyway related. Of course, that is also autoimmune, I think. I have also had a thyroidectomy for Graves disease....again, autoimmune. Genetic? Environmental? Thanks for any additional information you might have.

Hi martamarie11. I'm 79 and had hysterectomy at age 40 due to endometrosis. Was diagnosed 30 plus years ago with oral LP but found out it was also affecting my vaginal area. Three years ago began with a vulva dermatologist and she placed me on alternating nights applying clobetasol and estradiol. It helped but not relieved 100%. A few months ago I began seeing a gyno/urologist as it was difficult to pass urine--at all. This past week this doctor performed labial adhesion removal. He said I would have to use estradiol every night for the rest of my life. He said I could "do whatever I wanted to about the clobetasol." What I think I'll do is to use clobetasol twice a week until I see my regular dermatologist and see what she thinks. I don't think it is necessary to go back to the vulva dermatologist (who is 90 miles away) unless my local dermatologist thinks I should do so. I have been prescribed tacrolimus 0.1 that I apply to LP sites on other areas of my body--not on vaginal area. These spots pop up everywhere. It does have to be issued from a specialty pharmacy so that's why the cost is so high. I have good insurance so it's doable. for me. It does sound like you've got a lot of autommune issues going on. Pray things get better. Faye

@fdixon63 do you apply Tacrolimus to your mouth, too?

hi rashida. No, I don't apply Tacrolimus to the inside of my mouth, only to the exterior surface of my skin--when places have the appearance of LP.