Has anyone got this ‘lucky’ with endo?

[Gemmaa96]

so back story, I was diagnosed at 19, periods started at 12, were horrendous by 15. I’m talking 3 times a month. Agonising pain etc. first surgery I had it quite bad. And was told fertility was low due to the extent. Little did I know the type of procedure he did was a form of a kind of fertility treatment in my case. Ended up pregnant 3 months later. He told me I’d need surgery every 3 years to keep on top of it. 3 years passed and I just didn’t want to know. Didn’t want answers. Wasn’t prepared to deal with the potential worsening. So I went back on the 5th year (2021) when I thought if I don’t act now I don’t know what my likelihood of facing secondary infertility is. So I had the surgery. My follow up appointment I was told I have interstitial cystitis and the endo was no where near what we expected (touch wood). He popped the mirena coil in. But my body hadn’t settled still for a year (last April) I had gained 2 stone and developed acne. Never had that in my life. So I had the coil removed. Lost the weight but battling like crazy with my skin right now. But, I had an appointment with my surgeon to check in a few weeks ago where he’s now actually discharged me. As my periods are completely regular, they last between 3&5 days. Yes day 1&2 are so painful (this month it was just day 1 yay). I get the odd cramp on random days but that could be my bladder when I wake up and it’s full it hurts. But maybe that’s because I have a bladder disease lol. But I guess I’m just feeling lucky?? Has anyone else had this? Where you know it’ll never fully go away but it becomes really ‘reasonable’ if that makes sense?

[Liche]

Hi Gemma. In my case the endo is manageable. I had laparoscopy and I have the coil which has worked great for me. I always have doubts and fears it will return but its been 5 years I have been stable. I mean, I have symptoms but never as bad as before, had to change my diet etc but as you said, never goes away but is reasonable. Hope you continue to be well.

[TogetherWeAreStrong Moderator Endometriosis UK]

Hi Gemmaa96 what a journey you have been on so far! I was intrigued by your post but after fully reading it I know what you mean and I have been lucky enough to have long stretches of time relatively pain free, but always when I have been on medication to stop periods etc. But the last few years it has steadily increased even post surgery. So I really hope your Endo manages to stay 'reasonable'. Take care 💚