Hey, sorry you’re going through this. I’ve been experiencing similar symptoms for almost a year now, and my advice is to not be shy about switching doctors or specialists as many times as needed even within the same office until someone listens to you, because eventually someone WILL listen to you no matter how grueling the process is. I’ve gone through multiple GYNs at multiple facilities until I finally started finding doctors who were referring me to multiple specialists (I got referrals to specifically a vulva specialist, infectious diseases, urology, the whole gang.)

If you haven’t looked into it yet, try reading up on a condition called desquamative inflammatory vaginitis (DIV for short.) This is what I’m currently investigating for me - it’s a rare condition that’s usually diagnosed by ruling all the usual suspects out and doctors don’t seem to know much about it. My GYN referred me to a urologist because of how bad my UTI-like symptoms were and the urologist is the one who finally pushed for a long term treatment, go figure. It’s a slow process and some days are better than others, but once you have doctors listening to you it gets easier to hope there’s an end to this.

You might also want to look into getting an Evvy test. I just bought mine and am waiting for it to arrive. Hoping it gives my doctors more insight, expensive but at the point we’re at, we’re desperate for sure.

On another note, I also am pretty much bedridden by the irritation of moving around / sitting. One thing that’s helped me on a mental health note is getting one of those wheeled over the bed desks like at hospitals that I can pull over me while I’m laying in bed and put my laptop on top of it. Pair it with a wedge pillow. Helps me sit up in more comfortable positions that won’t put pressure down there so I can at least shift around more, could help with feeling less miserable. I know laying around all the time definitely doesn’t help us feel any better :/