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Not a Good Sport: How I Learned to Demand Better Care

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After moving back to my hometown, I had the daunting task of finding a new OB-GYN. As a woman with endometriosis, I was well-aware that I’d need to look around, so I asked my new physician for a recommendation.

My physician immediately recommended a doctor who was underwhelming, to say the least. He didn’t listen to me and was quick to prescribe a variety of birth control pills after I told him that I’d had bad luck with birth control pills. I’m a good sport, so I tried the pills yet again. When my symptoms raged despite the hormones, then I got side effects to go with my typical pain, I decided to go off the birth control. Again. He suggested I try another kind. I Googled this kind and found an average of one star out of five on all review sites. Though I understand the negative bias of online reviews, one-star ratings don’t lie.

When I followed up, asking for another option, he suggested an IUD or another birth control pill. “We can just keep trying birth control until we find one that works,” he said, but this felt lazy to me. I wanted a doctor to at least consider other options. He’d never done blood work to determine my hormone levels. Second, he’d never offered any suggestions around lifestyle changes. I had to believe there was more information out there because I could find more than I was getting from him online.

So, I asked for a second opinion, and I did my research. I found a doctor who was known for her research on endometriosis and chronic pain, so I called her office.
“It’s a physician to physician thing,” I was told.

The words recycled in my mind as I tried to sleep that night. I felt as though the “good insurance” I supposedly have seemed useless because no one would listen to me. I put off calling again because I knew I’ll get upset, but when I finally did, I was put on hold in increments of five minutes, until another half hour of my life passed with no answers.

I was tired, and my exhaustion was as much a result of dealing with the medical community as it was dealing with my pain.

I was told that to see the specialist, I would have to wait for permissions. The office needed to check on a few things. I thought about calling back a week later, after no word. My pain was constant now, a thing that was new. Though I had suffered from Endometriosis since I was 15 — having endured monthly or bi-monthly flares on and off throughout my life that have interrupted work, social events, and peace of mind — I now, after over a dozen types of birth controls, had constant pain.

It felt as though I was carrying a kangaroo pouch with a brick in it. My abdomen was heavy, my pelvis felt swollen. I couldn’t sleep or concentrate on anything, and my rational thoughts were overpowered by anxious guessing about what was going on in my body. I had a disease that was not easy to talk about, but I sat down with my boss to explain that I needed to go home early, take the day off.

After waiting that week, then another, I refused to be dismissed any longer.
I decided that my emotional state would likely affect my ability to effectively communicate to this office if I called back, so I begin to write a letter that inquired, calmly, about what my rights are. I dated it and sent it to the office, making note of it in my online portal. No longer than an hour later, I had an appointment.

These are the small wins, and though I am being seen next week and have no idea what will happen, I will continue to advocate for myself in whatever way I can, and perhaps if we all do, the greater community will begin to take endometriosis seriously. We deserve doctors who will look into options that are customized to our symptoms and that truly consider our overall health. I refuse be a good sport from here on in.

Getty photo by romankosolapov

Originally published: June 10, 2018
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