The Messy Catch-22 Situation of Living With Endometriosis and OCD

When I first became familiar with the term “comorbidity,” I was a bit put off. It sounded too dark, ominous, and, frankly, scary. I didn’t want to have anything to do with it.

Of course, I had no choice in the matter. I wasn’t allowed to decide if I wanted to have multiple illnesses at one time, that often overlapped and influenced one another. It just happened.

I didn’t choose comorbidity. Comorbidity chose me.

Frequently, we see comorbidity in mental illnesses, especially anxiety and depression. Depression, in fact, likes to come as a companion with many chronic conditions and illnesses. If you’ve read or seen “Fault in our Stars,” you might remember protagonist Hazel waxing poetic about the connection between cancer and depression, for example.

For me, I have a different “cocktail of comorbidity” — endometriosis and obsessive compulsive disorder (OCD). Yes, they may seem like strange bedfellows. They very well may be. And, unlike Hazel in “Fault in Our Stars,” I don’t think that one came riding on the coattails of the other. I just have them, together, simultaneously, because sometimes life is like that.

But the thing with comorbidity is that, seemingly related or not, they do often influence and affect each other in strange ways.

When I was in high school and perhaps earlier, I remember having really bad “stomach aches.” I would spend about 10 minutes before school in the bathroom most mornings. My mom starting buying lactose free milk, and I kept lactose pills and Imodium A-D in my bag. We didn’t really know what was going on, just that I had a problem.

In college, my periods were bad, and I went on birth control to regulate them and the cramps I got. My last semester of college, my anxiety and obsessive compulsive disorder came on strong, leading my mom to come and stay with me in my studio apartment, worried for my emotional and perhaps physical safety.

My “stomach pains” never really went away. I just learned to live with them.

Eventually I got married and got pregnant twice. When I was pregnant and breast feeding, the pains weren’t so bad. It was after I weaned my second child that the pains returned in full force, and the anxiety and OCD began ramping up again too.

I hand sanitized or refused to go shopping, worried that I was getting flu. I was afraid of getting other people sick because I didn’t know what was wrong and why I felt the way I did. What I eventually discovered were endometriosis and pelvic congestion syndrome fed my OCD mercilessly. When the pains got worse, so did the anxiety. Before I was diagnosed, we went to Maui as a family, but I didn’t want to swim in the pool, convinced that I had a parasite or some other bug and would spread it to others. My life was becoming boxed in, thanks to my two chronic conditions, neither of which I was getting proper care for.

Eventually, keeping track of the timing of my symptoms led me to stumble on endometriosis. Before that, and fueled by my anxiety, I had gone through a score of doctors and ideas about what was “wrong” with me. These included an ultrasound for gallstones, a CT scan for kidney stones, and a naturopathic debacle wherein I had to do an intense elimination diet and a stool test. Finally, they scheduled me for a laparoscopic surgery, where it was discovered I had endometriosis, an ovarian cyst, and enlarged pelvic veins.

Probably because of how they treated/cut off the veins during the surgery, I had a miscarriage a few months later. This traumatic experience triggered intense contamination OCD, which led me to get proper psychological care and go back on medication.

While my obsessive compulsive disorder is now much more manageable, the pains have returned. With them, so has the “medical” anxiety and compulsions. Pelvic issues and slight urinary incontinence put me in a state and led me to wear pads every day, afraid I would “pee my pants.” I have worried that I might have ovarian cancer, and this has resulted in my researching and “checking” various websites over and over again, examining the symptoms and risk factors. I’ve thought I’ve been “sick” and avoided doing things, though not as drastically as before.

I even went back to a gynecologist to get myself checked out again, going through another ultrasound — this one for my uterus area, though. I discovered that my pelvic veins are still enlarged, and they recommended I see an interventional radiologist. Endometriosis, of course, can’t be detected with an ultrasound, so my gynecologist is considering treatment for that as well.

These unknowns and medical procedures increase my anxiety, of course. The chronic and mental illnesses create a messy catch-22, one that has me questioning what is real and what is one illness or the other. Will I die? Am I fine? When will I be debilitated by abdominal pain and when will it be the OCD taking me out of the game temporarily?

These are the kinds of questions that those of us with comorbidity of illnesses face, especially when one or more of those are mental illnesses. It’s our life, though, and somehow we learn to deal with it.

Do you have similar issues?