Small Bowel Endometriosis

In June 2020, I was admitted to the hospital due to escalating pain in my mid-upper abdomen, followed by vomiting and tachycardia. My period had just started, so at first I thought I was having bad cramps, but the pain was different and much higher up. Turned out I had a small bowel obstruction (SBO) - there was a rather large mass almost at the end of my small intestine. They stuck a nasogastric tube in me, I was not allowed food or water, and they waited to see if the mass and swelling would shrink over the next few days. At this point, the surgeon was listing the various possibilities: Crohns, gallstones, diverticulitis...cancer. They were ready to jump into surgery, but after a few days in the hospital, I became partially unblocked, so I was discharged after 6 days.

I came in for more tests, CT scans, MRI, colonoscopy over the next two weeks. The mass was still there, so we scheduled surgery to remove the mass for end of July. In mid-July, again, at the start of my period, I started getting the same pain in my upper abdomen. I knew I was blocked again, so I calmly showered, packed my bag for the hospital, and told my partner to drive me to the hospital. Yup - rinse and repeat - NG tube, no food/water, and admitted me to the same ward - this time a corner room with a better view! Nice!

I told my surgeon that this is happening at the exact same time in my cycle - on Day 2 - and I asked if there was a correlation. I don’t remember the response, but I think he just assumed it was cancer due to the size of the mass. But he seemed pretty baffled to be honest.

Fast-forward to post-surgery: they ended up doing open surgery to remove the mass, along with a bowel resection, and removal of the “lacerated” appendix.

They sent the mass to the lab, and apparently, everyone involved was completely surprised that the mass was a huge endometrial implant. And I was like, I told you it wasn’t a coincidence that the blockage happened on the exact same day of my cycle!

Now - how did I get to the point of Stage IV Endometriosis, and a SBO without knowing it? Good question. I’m 43, have had regular periods, sometimes painful, sometimes not. Nothing I thought was unbearable though. Sex isn’t painful. I’ve never gotten pregnant - we tried for a while, but it never happened.

After surgery, I was referred to an ObGyn and I’ve been put on Orlissa twice a day - which is basically mimicking menopause. The side effects are terrible (hot/sweating all day and night, alternating with being freezing, headaches, fatigue). It’s highly unpleasant. I’ve been prescribed progesterone, to mitigate the Orlissa side-effects, but so far, it hasn’t helped. I just feel tired and foggy, not to mention clammy, all the time now.

The concern is that endometrial tissue could be anywhere in my pelvic area, so the Orlissa is trying to “quiet” everything down. That being said, I’m paranoid and always wondering if endo is going to strike somewhere else. If I get a cramp or an ache in my abdomen, I’m like uh oh, here we go again...but then it passes. Not sure what happens next, but I’ll be on this medication for the foreseeable future.

So, if you get a small or large bowel obstruction, it could be an endometrial implant. It wasn’t even on my surgeon’s bingo card, so be sure to speak up!