I’ve been diagnosed with Endo since August 2017. My gynae at the time told me it was the size of a 50p piece- attaching my uterus to my bowels. She didn’t do anything at the time because of it involving my bowels. So I was left for 2 years with just hormone treatments to try. Eventually my new gynae said my only option was surgery. Both my gynae and my bowel surgeon (each with over 20 years of experience) said it was the worst case they’d ever seen. One described my insides as unrecognizable.
I was diagnosed after seeing 5 different Drs. Each telling me to just try a pill or take ibuprofen. One even tried to class me as clinically depressed because I said I “couldn’t handle the pain anymore”. I didn’t mean it like that! The last Dr (who I now ONLY see) is an angel. She knew straight away that my symptoms sounded like Endo.
So my main advice would be to keep seeing new Drs and getting different opinions!!
I know that I’m lucky I only had to see 4 other Drs before I found the one who knew what was going on. However, that’s still too many. And even when I was diagnosed, my old gynae insinuated that the AMOUNT of pain I was in was exaggerated. Purely because she only found a very small amount. Like … No! So I immediately asked to see someone new.
I had excision surgery May 5th 2020. It was originally earlier but cancelled due to the pandemic. They took 4 hours trying to excise “as much as possible” in their words. But even though they took out 3 lbs of Endo (including removing a major ligament which supports the uterus)… it still wasn’t enough. I am still convinced there is Endo left and I am back to being in agony.
I’d like to point out that these were specialists. But my case was/is a very extreme one. It’s incredibly difficult to live with such severe pain daily but we just have to keep on going. I am still hopeful that one day (even if I have to go private) I will find someone who fixes me long enough so we can have children .