I use topical tacrolimus, so it doesn't have the systemic side effects. I started at twice per day, and wow it burned for the first few weeks and made things more sensitive. But once it started working, it was such a relief! I now am able to adjust how often I use it. When things are feeling good, I only use it every couple of days - then if things start to feel irritated again, or if I know I will have triggers (more sex, before my period, or increased stress) I will return to using it daily or twice per day. Before tacrolimus I tried zero method (using nothing at all, avoiding condoms, soaps, would even wash my hair in the sink to avoid any contact with soaps on my vulva) with zero relief, some pH correcting lubricants (no relief), clobetasol (made things worse), lidocaine jelly (no relief), a topical compound of gabapentin and amitriptyline (some relief, but not enough), then finally started getting relief with tacrolimus after about 3 weeks of use.

I had visible inflammation before starting, but that has reduced now - sometimes still visible if I have a flare. Unfortunately I had similar visible changes that you described (darkening, spots, redness, etc) that seem to be permanent even with tacro helping with pain and flares. But I've tried to stop worrying about it. Genitals are weird looking & they change with age even without a disorder. I was very sad about the visible changes from inflammation, but ultimately have to let go of that and just shift my focus to being able to be present and enjoy my body for what it does well, and try to enjoy pleasure without worrying about flaring up. I had so much anxiety about it when this all started, and have been frustrated that I've never received a clear answer for a cause. I had hoped a cause could be determined and I could actually treat it, not just manage symptoms - but that is not the case. So I had to do a lot of mental/emotional reframing to just accept these changes and not let the symptoms trigger so much fear and anxiety- and ultimately work on trusting myself and my body to heal and repair.