Part 4: The Excision Surgery (July 20)

The name of the surgery I had is a mouthful. It is called robotic-assisted excision of endometriosis with cystoscopy and hydrodistension of the bladder. In short, I had a laparoscopy (camera in my abdomen and pelvis) to officially diagnose the endometriosis, a giant robot to help Dr. Arrington cut out all the disease (as opposed to burning it out with a laser), a camera put through my urethra into my bladder to check for lesions and bleeding inside (cystoscopy), and then my bladder was filled with a solution (hydrodistention) as part of a test to determine if I have interstitial cystitis (a painful bladder condition). For a more detailed description about excision see my Treatment Options page.

I was extremely lucky to find Dr. Arrington as he is the only surgeon in Utah who performs excision, and one of the only surgeons in this portion of the United States (only about 200 out of about 40,000 OBGYNs are trained in excision). Before the surgery he anticipated to find a borderline or more severe case of endometriosis, and thought it was more than likely one surgery would be sufficient (he gave me a less than 15% chance of reoccurrence). This is what he found in my particular case:

My official diagnosis was pelvic peritoneal endometriosis, and according to my surgical report, my case was both complicated and complex. It required almost complete removal of my posterior peritoneum (the lining of my pelvis), and the disease was much worse on the right side of my body (usually the left is worse, so that surprised Dr. Arrington). Interestingly enough, even though the endo was everywhere, classically my endometriosis was only a stage 2 or mild. The 4 stages (minimal, mild, moderate, and severe) are determined based only on the amount of adhesions (or scar tissue) present, so my scarring was very mild.

While some of the endometriosis was visible on the surface of my peritoneum, the majority of it was inside the peritoneum, and was only visible once he cut open the lining. I also had endometriosis affecting my ligaments, growing around some arteries, up and around my ureters, in the cul-de-sac, around my bladder, near my colon, tracking deeply into my pelvic sidewall and pelvic floor, and almost growing into my thigh. I had hemorrhagic paratubal cysts (blood-filled cysts growing off of my fallopian tubes), cysts inside my ovaries which were drained, an enlarged obturator lymph node (on my pelvic floor by my bladder) which was removed as a precaution, and adhesions gluing portions of my colon to my pelvic floor. I honestly think if I’d had laser ablation, the vast majority of my disease would have been missed (inside the peritoneum) or left alone (around vital organs and structures).

After complete excision of the endometriosis, I had a pain pump surgically inserted in my suprapubic area (for pain relief delivered directly to the nerves), and a cystoscopy with hydrodistention was performed. Since I had complained of severe urinary frequency, urgency, pressure, and occasional incontinence, he performed these procedures to check for interstitial cystitis (IC). With the camera he looked, as he stretched my bladder to its max capacity, for Hunner’s lesions (painful, bloody lesions in the bladder wall) which would indicate IC. My bladder wall wasn’t normal, but he didn’t see the typical lesions to make an official diagnosis. He did discover though that my bladder wall is full of scar tissue, so it doesn’t stretch, and only holds between 200–300 ml of fluid, or about half to two-thirds of what it should hold. That wasn't surprising considering how much endometriosis was around my urinary system (and the constant jokes I used to make about having "the world's smallest bladder." I was right!) Since the test wasn’t definitive I have to go see a urologist for a work up to determine what the deal is with my bladder.

After surgery a few things were obvious: 1) My severe period pain and irregular cycles should no longer be a problem (I’ll know once my depo shot wears off), 2) My lifelong constipation issues were caused by something physical and that’s why no amount of laxatives ever helped. I never would have guessed my intestines literally glued down and couldn’t move, 3) the endo didn't appear to have affected my fertility (although I may still have PCOS and that would affect it), and 4) My bladder was definitely affected by the disease and there’s a real reason I need to pee every 10–30 minutes. While the surgery might not have “cured” me of everything (my bladder issues are still an unknown), at least I have answers to and relief from several problems that have plagued me for years, and I’m one step closer to complete healing!

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For those who aren't squeamish, this is 20 minutes of my surgery. The endometriosis is pretty easy to see and looks quite painful.