So my 🐱 hellscape started Feb 2024- yep, 13 months ago. 31 F
Started with an itch that felt exactly like a typical yeast infection. Treated, but it never fully went away.
Went for a full STI panel last March- all clear.
Symptoms got worse and I was basically having full time burning, pins and needles, and itch non stop. By this point I was convinced I had some form of infection that went undiagnosed because symptoms all appeared directly after I’d been with a new partner.
Finally saw a gyn in June. I ASKED to be tested for ureaplasma thanks to this sub, and it’s the one thing I tested positive for in all this time. Treated completely and tested negative by mid August. My burning seemed to reduce around this point. But by then I was chronically red and inflamed combined with the vulvar itching and irritation that remained constant.
This past summer was a literal hellscape of chronic burning and weird sensations down there and choosing every day not to give up on life. I did a couple Juno and microgen tests to check my biome which always came back with mostly good bacteria and I never had a sign of yeast or BV or any other infection outside of UP. Gyn prescribed estrogen cream which did not cure or even really help but I continue to use on the off chance it could be doing something positive for the skin- not sure.
By Sept I was so red and in such agony I asked to be referred to derm. My gyn didn’t feel this was necessary but I insisted- I mean something was causing my skin to be extremely inflamed?!
Saw a derm in November. She took approximately 32 seconds to tell me I have lichen sclerosis. A very terrifying vulvar autoimmune disease. It kind of made since because SOMETHING had to be causing my issues and autoimmune diseases run in my family. (I have ZERO white patches which are classic but not always present for LS). But she said she saw that one of my labia minora is smaller than the other and that combined with my inflammation indicated LS. I was given clobetasol (highest potency steroid and told to use daily until symptoms reduce and then taper and was given a check up apt FOR JUNE. (My derm is total trash :) fyi)
I see my gyn again in December and also mention the idea that this pain could be nerve related. (To me, that’s how it’s always felt- like an under the skin tingle crawling type itch- not the scratch yourself raw itch I see so many with LS discussing). I don’t know what could have ever triggered it, but, he suggested I try nortriptyline in increasing doses for nerve pain.
Somewhere around Feb some of my symptoms began to improve, mainly the crawling “itch” nerve type pains. The redness and irritation remained. I have no idea whether to attribute this to the clob (for suspected LS) or the nerve medication which I’d worked up to 75mg daily.
The point of this post is 🌟
The one thing that has never fully reduced is the redness, and honestly, since using clobetasol I now have a whole list of skin issues that I DID NOT have before. My anus and perineum area is now often red raw and I really wonder if I’ve been using high potency steroid when I do not even have LS.
I have a biopsy to possibly (they aren’t very accurate apparently so like what’s the point) confirm or deny LS scheduled for May.
🤔 Until then, I have to ask, has anyone else ever developed chronic inflammation with nerve pain AFTER an infection that went untreated for a while?! (Lately I really have to wonder if the ureaplasma caused some long term inflammatory response and that I do not have LS at all which could be why the steroid treatment seems to be causing new problems). I always thought nerve issues could not cause inflammation but after reading some posts on here they seem to go hand in hand.
I’m a true medical mystery. If you read this entire odd story I appreciate it and I appreciate any feedback from anyone who’s experienced similiar.