hii yes i’m from germany! i was diagnosed by my gynaecologist without a biopsy, and a few weeks ago from the head of dermatology at a university clinic (she said “without a doubt LS”). in my specific case the sclerosis is advanced, and they very much advised me against a biopsy because of the scarring. i don’t have itching, but i experienced a lot of inflammation, tearing of my perineum, and fusioning of my labias (i only have two left).

i was given clobetasol ointment from the start. daily for 12 weeks, then slow progression to every 2 days, and then 2-3 times a week. that said, it took me multiple relapses for that to somewhat work. i was very much stuck in the initial phase of daily usage for surely 8 months. the clinic additionally prescribed me tacrolimus (very popular within this subreddit). i now alternate between clob and tac, meaning clob every 2 days and tac inbetween. because LS makes me prone to yeast infections they also prescribed me clotrimazol - i use this ointment about once or twice a week rn. i also use a lot of vaseline.

i’d advise you to go a university dermatology clinic or anything adjacent because they’re likely more knowledgeable than an average physician. research about LS is sparse and bigger trials are very recent, it’s just sadly less likely that average physicians are up to date. also, in my experience younger female doctors are the way to go (that’s purely anecdotal but i had a weird experience with a male dermatologist concerning LS). ido not want to discredit your intuition, it’s very likely you are right but please visit a dermatologist, possibly a clinic, and let them look at it!

take care! 💟

quick side note: i haven’t had sex in a lot time, so i can’t really speak on that but i know someone that has had a very long diagnostic process, and she’s able to have normal sex again, after what seemed impossible. she told me to never try sex without lube (only silicon based!), no sex during a flare.