Diagnosing Endometriosis Is Hard, But Treating It Turned Out To Be Worse

When I was twenty-six, I met the physicians I now think of as Drs. Hotshot, Not Hot, and Hot Mess. I saw them in quick succession and for the same reason: I had been diagnosed with endometriosis, and had no idea what to do about it. To be accurate, I should say I met four doctors, but the first doctor’s part is too brief to warrant a nickname. She looked inside my body and then, advanced endometriosis being beyond her purview, sealed the incisions right back up. This meant that my first surgery had been for diagnostic purposes only. Later, sore and woozy in the recovery room, I wondered what kind of disease required surgery just to diagnose it.

A little-understood one, I soon discovered, because that first doctor also passed along the advice that started this tale: “Learn everything you can about endometriosis,” she said, and then gave me the name of a doctor at a prestigious Boston-area hospital.

To this point, my experience with doctors had been limited to my childhood pediatrician. I thought doctors were demigods: wise and powerful beings to be avoided but obeyed. If the doctor wanted me to do research, I would do research.

I was only trying to help myself, but each doctor visit left me feeling more helpless.

The results weren’t exactly encouraging. I learned that I had endometrial tissue (which normally lines the uterus) stuck on many places it didn’t belong, including my bladder and large intestine. Like the lining in the uterus, each menstrual cycle caused the tissue to grow and then shed, but unlike that lining, the blood outside the uterus had nowhere to go. The result was adhesions — organs glued together by scar tissue — and the sort of penetrating, furious pain during menstrual cycles that drove me to the hospital in the first place. Further fun reading revealed that endometriosis — or endo, to use its affectionate nickname — was difficult to treat, with no known cause, and no known cure. No one even knew if leaving it untreated would cause life-threatening problems, or infertility, or just a big mess of pain.

Lovely, I thought. Why had I been instructed to research this? Was feeling helpless and depressed supposed to be part of the treatment?

Obedient as ever, I called and made an appointment at the prestigious hospital. Dr. Hotshot perched on the edge of his large, impressive desk, his diplomas from large, impressive universities framed on the wall behind him.

“No problem,” he said, and then casually recommended that I take an intense form of birth control that has side effects including hair loss, facial hair, and depression, and whose endo-dampening effects ended as soon as you stopped taking it. I’d read about it, and decided I didn’t want to take something that would make me feel worse than I already did. Dr. Hotshot, however, dismissed my concerns: “It’s effective at suppressing the disease. So that’s settled. Now, we should talk about breast cancer.”

Cancer? I blinked; nothing in my research had said that endo increased the risk of breast cancer.

“Yes, it’s unrelated,” he agreed, “But given your family history, you need the BRCA test ASAP.”

It was a close call, but I made it outside his office before I burst into tears. “I’ll get cancer!” I wailed to my parents on the phone. “And I’ll be bald and bearded and crazy!”

Dr. Hotshot had at least given me a name for a second opinion. Dr. Not Hot was neither hot nor not: his nickname came not from his looks, but from the fact that his approach was straight out of the 1950s.

Earnest and warm, he hastened to reassure me: endometriosis could cause infertility, but I could still attract a husband, and maybe even have babies. Again, I blinked. I’d just learned I had a baffling, incurable disease; I hadn’t gotten a chance to consider what this would do to my love life, or my future. I had a sinking feeling that I shouldn’t mention that attracting a wife would be more my speed.

Dr. Not Hot then told me that I had endometriosis because of my background. I frowned, beginning to see why I’d been told to do research. “I thought it wasn’t genetic,” I said, keeping my tone as polite as possible.

“No, but you’re white,” he said. He told me that having babies early prevented the disease — a theory that research debunked years ago. It appeared that Dr. Not Hot hadn’t gotten that memo; he told me quite seriously that since blacks and Latinos had babies when they were teenagers, they were less likely to get endometriosis than white women (a theory that is obviously incorrect on numerous levels).

This was in 2007. Dr. Not Hot was the head of gynecological surgery at another prestigious Boston hospital. To his face, I was polite and submissive, but inside, I was furious. With him, yes, but also with myself. I was only trying to help myself, but each doctor visit left me feeling more helpless. This people-pleasing, politely obedient thing I had going wasn’t working. It was time for something different.

First step toward change: find a reasonable doctor who lived in this century. Getting referrals wasn’t working, either, so in desperation, I joined an endometriosis advocacy group which provided members with doctor recommendations. Dr. Hot Mess’s recommendation said he was a skilled surgeon with experience treating endometriosis; I figured he at least wouldn’t tell me to go have babies.

My first impression of Dr. Hot Mess was that I was meeting a bundle of clothing. When I said hello, the bundle looked up and revealed a face and glasses, and I realized it was actually a middle-aged man in a rumpled suit, with terrible posture and odd, jerky mannerisms.

“Endometriosis? That’s a bummer,” he said. He told me I had some options, and listed the same drugs as Dr. Hotshot. My heart sank. He’s just like the others, I thought, and got ready to gather my things and walk away. And then I remembered my silent, seething anger at Dr. Not Hot, and how Dr. Hot Shot had made me feel about as important and valuable as a speck of dust on one of his diplomas.

I swallowed, tucked my sweaty hands under my thighs, and told Dr. Hot Mess I didn’t like the side effects. He offered a low dose; I asked for another option.

“I think the low dose should be fine,” he repeated, his attention on my chart, “Most women seem to have fewer side effects with it.”

I eyed his rumpled shirt and wondered what would happen if I really argued with him; would he kick me out? Call me names? Ignore me? I could probably survive that, I thought, and settled more firmly into my chair. “I really don’t like the side effects, and I don’t want to take these drugs for the rest of my life. What else can we do?”

He looked up from my chart and stared at me, as if recalculating. I resisted the urge to fill the silence with an apology.

“Well, I suppose — if you’re sure…?” he said, tipping his head to the side, and raising his eyebrows.

“I’m sure,” I answered.

It was as if I’d pressed a magic button, and changed the entire tone of the appointment. He stopped pressing the drugs, and started asking me questions, and the more assertive I became with my answers, the more our interaction changed: when I spoke, he listened. Actually listened, as if I had something valuable to say.

I was shocked, but I got over it. Quickly. And then he couldn’t shut me up.

That visit went on for a long time. After a lot of discussion, we decided — together — that my best option would be a low dose of (largely side-effect-free) birth control to suppress the disease, and then another surgery, this time to remove as many of the adhesions as possible.

This tale has a hopeful ending. Though rumpled, Dr. Hot Mess was as skilled as advertised, and my recovery from that surgery was much easier than the first. It wasn’t a cure, but it drastically reduced my symptoms, and made the disease much more manageable. And even better than that, I finally understood: I was far from helpless.