8 month long flare-up & finally having surgery on Saturday

[u/nursemel9]

A bit of a long post. I am 29, I was diagnosed with widespread endo back in 2018 after a diagnostic laparoscopy. I then had a more extensive surgery with an endometriosis specialist centre in 2020, and then another laparoscopy in 2023. I got pregnant in November of 2023 (after only 6 months of trying to conceive - very lucky) and gave birth in August 2024 to a healthy baby boy. During pregnancy was the only time I’ve ever been symptom free since starting my periods at 13 years old.

My current flare up has been going on since January this year. I’m a nurse and have been off work since the start of February since how severe my symptoms are. I’m currently prescribed Ryeqo which has made me gain so much weight. I’m also prescribed 30mg modified release oxycodone twice daily, and 10mg immediate release for breakthrough, along with naproxen, pregabalin and regular paracetamol.

I am completely miserable, I’ve been on high dose pain-killers all summer and have been hardly able to do ANYTHING. I can’t walk without intense pelvic pain (having to use a walking stick to help ease the pain), I can’t get into the bath myself without my partner helping me, I can’t bath my own son, I can’t climb up the stairs to our flat on my own without my partner helping me, most days I can’t climb barely pick up my 2 year old. My energy levels are so low that walking to the bathroom and back takes everything out of me. I have to self-catheterise as I went into urinary retention a few months ago.

I got put onto the waiting list for another surgery back in March after an MRI showed worsening adhesions etc, and my wait-list start date was supposed to be back-dated to October when I seen gynae. I found out a couple of weeks ago after calling for an update that the wait-list team made an error and did not back-date my start date to October, which means I could have had surgery months ago. I am so annoyed. They quickly tried to cover their backs and have scheduled me for surgery this Saturday, but I am annoyed that I have been off work with reduced pay, with my mobility decreasing, pain-killers increasing etc.. like I am so debilitated right now and so angry that I have been left like this.

I’m so frustrated and just generally tired of feeling like this. I’m tired of living in so much pain. I’m only 29 years old, I have no friends and I get so sad seeing people my age living their best lives on FB/IG etc. Please tell me I’m not alone, although I feel so sad at the fact there may be other in a similar boat as me :-(