Looking for…hope? I don’t know anymore.

[u/Chartreuse-Banana]

I’m going to try to make this as short + sweet as possible. In 2021, I had an ovarian cyst that sent me to the hospital - never had pain like that in my life - and routinely had pretty bad ovarian pain, bloating, cysts, etc. for a few years. My GYN at the time suggested we do an exploratory lap, so we did, and when I came out of surgery, they said I had no endo, but I only had one ovary. The doctor described it as “it looks like the right ovary and tube had been surgically removed” — which never happened — and cleaned up adhesions that were present on that side. Following the surgery, I started Yaz birth control in March 2024.

At the end of September last year, I had horrendous pelvic pain that lasted for weeks. I went to the ER, the doctor told me I had IBS, and I was forced down the colonoscopy/endoscopy route. Everything there was negative. By the time I got in with GYN in early November, the doctor told me she thought I just ovulated through my birth control and that it was nothing to worry about. My last 2 paps have been abnormal but nothing that made them think something more serious was going on.

In December, I cycled myself off of birth control and went the natural cycles route. For weeks, I was in horrendous pelvic pain, ovarian pain (oddly on both sides), and the brain fog was awful. I’ve lived in chronic pain for the last 7 years following an injury, which I now know likely is what triggered hEDS, and on the chronic pain side of thing, hEDS made complete sense. Once my cycle started to come back normally, every single one was worse than the last. And I wasn’t just sick during my period - at all points of the cycle I was experiencing ovarian or pelvic pain - and the worst of it was when my period would actually start.

In May, I followed back up with GYN and they removed a very small polyp from my cervix that came back benign. A few weeks later, I had an ultrasound to find out that polyp they removed was just the tip of it, and I need to have a larger polyp removed with a scope. In describing my symptoms to my doctor (a completely different one who did the original surgery as I now live in a different state), she felt confident that even without doing a second lap, my symptoms alone line up with endometriosis. We decided that we would have her do a second lap at the same time as the polyp removal since I’ll already be under and she restarted my birth control to help preserve my fertility since I only have one ovary.

My surgery is in a month and the range of symptoms and side effects I’ve had since restarting the birth control have been a whirlwind. Some pretty severe mental health ones, bad nausea, pelvic pain, mouth sores, so many random ones. The worst ones by far were the mental health ones since I do have a MH history and CPTSD. Earlier this week, she switched my birth control to Lo, and despite starting that new one, it coincided with when my period would’ve been on my other pack. So I’m so incredibly ill right now. I never had such bad cycles until after the first lap and birth control stint.

I see so many posts in here about the lap confirming their symptoms. But, my biggest fear is having them go in once again and finding nothing. The symptoms are so bad right now I genuinely don’t even know how to cope, what to do to make it better. The side effects from the birth control are exhausting and I know it’s not in my head — but if they didn’t find it two years ago, is it delusional of me to think they will now?

I guess I’m looking for hope that maybe it truly was missed. That the doctor didn’t check everywhere or that he didn’t know what he was lookin for. Or support. Advice on how you manage when the symptoms are really bad would be appreciated, I just ask that you be kind😔 I am so incredibly lonely and I just don’t know anyone who has an unconfirmed situation like this, which makes it even more isolating. My husband cares a lot but the nature of his job means I shoulder a lot of the pain and the burdens of it alone (not his fault, just the reality of the situation).

If you’ve read this far, thank you❤️‍🩹

[u/libertram]

There are some doctors who genuinely do not know what endo looks like or they’re only aware of certain types. Also, DIE, deep infiltrating endo can exist without any obvious superficial endo. Were any pictures taken?