hi all. I posted my story below as: 36, Probably Androgenic Alopecia? Probably Mirena Trigger Tags: Add Tags As the title implies, I was sure I had androgenic alopecia, set off my going on and off Mirena Iud. I had multiple blood tests, pelvic ultrasound as well as hormone levels for PCOS, and thyroid tests, vitamin levels...everything came back great, not just okay but great, except for some low vitamin d. First dermatologist gave me finesterade, second gave me spironolactane, I took neither as I’m still thinking about having kids. third actually took some time and recommended blood tests, but when they all came back normal, said “have we talked about rogaine?” I said I didn’t want to start it or anything like finasteride or Spironolactone unless I’d had a scalp biopsy to be sure, so we did a scalp biopsy. I just got the results today: lichen planopilaris, an autoimmune disorder (well, probably; they’re quite sure) — basically your body attacks the hair follicles and it’s scarring, The hair loss is permanent. Sorry for tmi, but I’ve also been having chronic vaginal inflammation, which I am now sure is a similar autoimmune reaction. Anti inflammatory cream and vitamin d have at least for now helped with that (in remission of the vaginal inflammation, at least for right now). In a way, it’s a relief to have an answer. I’d considered lichen, but I was so focused on androgenic alopecia it was still a shock (I guess I can have both...). Maybe it’s pathetic but I’m taking the day off work to process everything. I’m feeling 1) relief at having a diagnosis 2) grief at the thought there is officially no chance my old hair or a semblance of it is coming back, even with rogaine (I even bought a bottle...guess I can return it!) 3) fear that I have the frontal fibrosing form, and will lose my eyebrows (I have some thinning in my eyebrows) and hairline totally 4) proud that I insisted on a scalp biopsy and went through several dermatologists and a lot of tests that wouldn’t have happened if I hadn’t done my research 5) pain that I can’t treat it, only stabilize it 6) both fear and a sense of “fuck it” about the future. There’s something that’s both horrifying and weirdly freeing about knowing it’s permanent and scarring. Like shaving it all off and getting a wig feels somewhat appealing for the first time. Although I guess I have the same horrible “sitting around and waiting for it to get worse or stabilize” situation as I did before. But at least now I’m not clinging to hope or wondering if I’m delusional or other emotional cycling. 7) it’s possible that going on the iud did set this off, but I guess it’s a relief to lay down the burden of feeling like it’s all my fault this happened for going on the iud. No one really knows what it causes it; it’s more common in women and 30-50 so...I guess I feel in my heart the hormonal changes of the iud did kick this off, as that’s when symptoms started...but it’s imposisble to know for sure. I feel like I’m letting some of the self-blame go. Dermatologist wants me to use clobestal (topical steroid) every day for a month and then come see her. Don’t know what the future holds, just wanted to share and say: insist on a scalp biopsy! Reading about someone else who had Lichen and found out after insisting on a biopsy is part of what made me insist on one. It can seem like a waste if you don’t have something like this, but I’m sooooo glad I didn’t plunge into Spironolactone and rogaine, which wouldn’t have helped and may have made things worse. Wouldn’t have known without the biopsy!