Just dealing with emotions today.

I had my first surgery in 2022 at the end of the year.
Beforehand, I felt crazy. Doctors had dismissed me, and sent me in circles as no one could figure out what was wrong with me. My fifth visit to the ER (within 10 ish months) was the first step forward. It was the first pelvic related visit (as I had other issues too and most of them in retrospect were endo but I didn’t know at the time), where they saw a cyst on the ultrasound.

I was able to have a GYN monitor it for around 3 months. She thought it looked like a chocolate cyst on the ultrasound, but still wanted to wait. After it didn’t go away, I was referred to an excision specialist for surgery. During the consult, it was determined that indeed I needed surgery, however, besides the cyst and what seemed like mild adenomyosis, and a couple small possible adhesions everything looked pretty good.

The surgery ended up taking almost twice as long as scheduled (close to 4 hours). I lost my appendix, they removed a medium sized cyst, but I had Endo, so densely in my pelvic cavity my pathology report was so ridiculously long. I had endo on my bowel which was DIE but was luckily able to be shaved and stitched, among other places including near my kidneys, etc.

Fast forward. The first surgery was a game changer. It took me about a year to recover, and then for the first time SINCE I WAS A KID, I was pain free some days! My periods didn’t feel like they were killing me, and my GI symptoms were slightly better.

I got relief for approximately 6-10 months.

Then, things got bad, really quickly. My pain levels were through the roof.

I went back to my surgeon who told me what I was expecting. I needed another surgery, my uterus was stuck and couldn’t move very well. And more endo was expected on my bowel and was showing around the same space as last time (supposedly a 3% rate of occurrence in the same spot). So we scheduled surgery and I worked it out with my employer. Not a week from my surgery date (when I felt like knifes were ripping out my insides daily), I got a tooth infection and could not have the surgery. It was postponed over 8 weeks longer due to the need for two surgeons to get involved. They used fish skins to keep things from sticking back together (hopefully).

My pain got so bad I went to the ER to make sure nothing happened during that additional waiting time.

Day of surgery two, my excision surgeon told me she’d operated on near or over a thousand patient during her career, and I was in the top of 10 in patients of how severe my endo is (she was specifically talking about the age range closer to mine between 18-28 ish - I was 21 at the time).

After surgery, the surgeon made my dad cry. It was estimated for 3 hours or less and took 5. My uterus was frozen, ovaries stuck, adhesion between diaphragm and kidney (causing SO MUCH rib pain), I had fibrosis in my pelvis, adhesions, near my kidneys/on sidewall, I had more endo (not as much), lost 8” of bowel as it was more risky to shave so many spots off in the same space, and so many adhesions afterwards the surgeon told my parents I was the worst case she’d seen. (Age 23)

I just want to be able to live a semi normal life and have kids one day.

Bright side is I’m tired, but two weeks post op, my pain levels are already better than they were prior to surgery (which boggles my mind, but it hurt to move so badly and now everything is free).

To anyone who read this far, thank you. Just needed a little rant/solidarity to process.