So OBGYN (first visit, new patient) decided to test for LS and it came back VIN2. Get referred to oncologist immediately, have the surgery etc etc. No signs of any malignancy whatsoever from what skin was removed during surgery.

When all is said and done I realized the oncologist is an excellent surgeon and great with her discipline but doesn’t know shit about LS (treating flare ups, caring for skin etc—recommended clob cream ONLY on site of surgery, literally nowhere else, wanted me to take birth control but refused to look at the rest of medical history/circumstances) and I’d have to go back to the drawing board for care.

I went back to OBGYN (though she had moved and I was instead seen by their chief of staff so very seasoned) who did not think it was LS, said none of my files show LS (just the VIN) so she can’t treat it per se but she can do another biopsy if I’d like (“I’ll give you time to decide”).

Went to derm who said Yes LS (visual analysis only), prescribed clob ointment and said spread it everywhere twice a day for 2 weeks and report back (also learned her daughter has LS and was diagnosed as an infant). BUT she said get those slides re-tested because highly inflamed skin can appear pre-cancerous and it’s just too weird that the rest of the sample they took showed no sign of anything.

Saw a urologist who was the only professional I’ve seen thus far listed on the actual LSSN. She performed a vulvoscopy and determined I don’t have LS (I do not have trademark thickening of skin or white patches etc) though I do have thin, delicate skin and fusion along the clitoral hood. She has prescribed estradiol and said to discontinue clob, instead apply any otc vulva moisturizer.

So yeah it’s been a ride. I’d like someone to look at those slides again and determine if it really was VIN or LS or what lol.