Struggling with Endometriosis Symptoms and Lack of Libido

I have Kaiser insurance (literally the worst) and I’ve seen multiple gynos in the last year. One said “unfortunately we can’t help you unless you’re trying to get pregnant.” I replied “that’s an interesting way to treat a progressive disease.” She then said “my sister has endo and I wish I could help, but Kaiser’s policies won’t allow me to.” So honestly it’s probably not the gyno that’s the problem, but rather the hospital policies. Which makes a lot of sense, I don’t know how else doctors would ignore our pain.

It took me two years and several doctors and gynecologists to get my diagnosis and surgery. My first gynecologist I had when it all started left the practice. His replacement was horrible and she refused to listen to me and what I needed. Sent me to GI who had me do completely unnecessary tests “just in case” even though they were 99% sure it was GYN related. They sent me back to GYN but I transferred to a new one who dug around a little bit and kept monitoring me. COVID happened and my options were birth control and waiting. Restrictions lifted and I was able to schedule surgery which then totally confirmed that I had horrible endo that they couldn’t even fully clean up. So I have an IUD now to limit my symptoms because they don’t want to give me a hysterectomy just yet even though I’m about to be 35 and have a child about to be 17 with no real way to have another child as I’m single to boot.

Your story sounds like mine to a tee. I lost my sex drive entirely before my endo diagnosis. For me I think it was more mental because it was so painful to have sex. my body would tense up and I would have extreme 10/10 pain during sex, so mentally sex just wasn’t something I ever wanted to do to avoid the pain. I finally went and saw a pelvic surgeon who specializes in endometriosis, had surgery and the pain is essentially all gone. my sex life is now better than it’s ever been. If I was you I would make an appointment with a pelvic surgeon who specializes in endometriosis and pelvic pain. It changed my life.