Published on November 17, 2017 for Bitch, Magazine.
You’ve got the endo look,” he said. The specialist gestured to the burn marks on my inner forearm.
Sitting uncomfortably on a piece of paper, I looked down at the patchy redness that had developed from holding a heating pad, turned all the way up, tight to my pelvis for hours on end. “My thighs and my pelvis are covered too,” I replied with indifference.
“I know,” he said with understanding, without even seeing me undressed.
Almost two years ago, I was diagnosed with endometriosis, a chronic reproductive health condition that affects one in every 10 people with uteruses, although experts suspect it may be even more. Endometriosis causes pelvic pain, fatigue, back pain, and infertility, among other debilitating symptoms. Adequate treatment for it, as I would find, is rare, and in some cases prohibitively expensive. Diagnosing endometriosis takes an average of 10 years, and it is especially underdiagnosed in young women.
It all started when I was in high school—my period became irregular, first stopping for three months in my sophomore year, and then dragging on for three months in my senior year. My OBGYN didn’t seem to think much of it, and put me on birth control to regulate my cycle. Still, I was constantly being sent in for ultrasounds for mystery pains that never yielded any explanatory results. One night in college, after struggling through a particularly nasty bout of cramps, I passed out from the pain. In the ER they told me it was likely a UTI, and sent me home with antibiotics, despite my test results showing nothing of the sort. I remember the attending doctor that night saying quite matter of factly, “We see this all the time with girls of her frame; she’s young, she’s thin—it’s not uncommon.”
There were other signs too—pelvic pain and bleeding after sex, constant stomach problems, heavy, clotty periods. Most of them though were the types of symptoms we’re socialized to internalize, to explain away, to expect to a certain degree as people with menstrual cycles. But when I started my first year of law school, my cramps started coming on a full two weeks before my period. I was constantly nauseous, fatigued, and dizzy. That’s when an OBGYN mentioned the possibility of endometriosis to me, and, without explaining what that meant, sent me home with a prescription for 550 milligram tablets of Naproxen to take twice daily for the pain. It seemed to work at first, but a month later, my period came and went and the pain did not. It persisted for the weeks following my period, and straight into the next one, even more unbearable than the last.
I scheduled an appointment with a specialist in Boston who explained there was a procedure he could perform that would offer me some relief, and explained other treatments, like hormone suppression (being on continuous birth control) that would help maintain its results. The surgery confirmed that I had endometriosis. It was both validating and scary—I finally had an explanation, but the future was still uncertain.
My diagnosis took seven years, but that was not the end of the road for me. After the 45 minute procedure, which I was assured went well, things seemed to get better. But a mere two months out, I was in agony again, this time tenfold. The cautery surgery made the agonizing daily pain worse, and my surgeon started pumping me with hormones. They essentially sent me into early menopause—complete with full, stand-in-front-of-the-refrigerator hot flashes. They made my skin oily, made me depressed, and caused me to gain weight.
Trips to the big, fancy hospital with the tiny, cold waiting rooms with my mom grew routine. This isn’t working, now try that, my doctor would say, each time assuring us that this treatment would work. Cold fingers and plastic instruments poked and prodded inside me, and I laughed to think that I was once a girl who was nervous about gynecological exams. I would sometimes count to myself how many strange and new people I had spread my legs for, and how indifferent I had become to that immediate and sometimes awkward intimacy.
“Let’s send you in for an ultrasound,” my doctor suggested. Sitting in radiology, an attractive young couple filed in with a black-and-white printout of their sonogram. They fawned over it, kissing and holding each other blissfully. I tried not to worry if that would ever be me. I put an Ativan under my tongue and waited for my name to be called. As the ultrasound technician swirled the curved instrument in the jelly on my abdomen, I writhed in agony. My whole midsection was tender, and pressing on it felt as if it were covered in a bruise. Tears started to stream down my face from the pain. When I sat up, a nurse came in, glanced quickly at the black and white pictures, and told me nothing was wrong.
I felt like I was losing my mind. I wanted to trust my surgeon, who assured me his course of treatment would work. It was an elite hospital and he was the head of his department—but he and my body were telling me very different stories.
Months into being sick with no sign of recovery, my sorrow turned to desperation. Patients are often incorrectly told that a hysterectomy cures endometriosis, but the disease produces its own estrogen and can continue to survive and grow in a body without a uterus. My first surgeon used incorrect and outdated methods to treat the endometriosis, as is common, and explained to me that since cautery failed, my only options were more progestin or a drug they give to pedophiles to lower their sex drive. We settled on more progestin.
“If that doesn’t work, we can consider removing your ovaries,” he said, matter of factly.
I left the hospital that day and turned to my mother and said, “If this progestin treatment doesn’t work, I want to remove my ovaries.” I was 22. I spent the night, and many nights after it thinking about how I could afford to freeze my eggs, and how I would afford a surrogate one day, if it ever came to that.
I knew endometriosis could cause infertility down the line, but I was desperate for relief. At the same time, becoming pregnant, starting a family, seeing my children grow, were all things I’d wanted for as long as I can remember. I had a graduate degree to finish, a career to start—but all I was thinking about was what would happen if I couldn’t have children, or how I would explain that to a partner. I was worrying about how my parents would feel if I couldn’t give them grandchildren. It gutted me.
The most fraught relationship I now had was with my own body, and I had no idea how to handle that. I knew how to handle difficult people in my life, and I thought I knew how to love my body; I knew how to love the thin, fit, health body I had before endometriosis, at least. But I didn’t know how to love this body; this sick body, this body that had turned on me, that came between me and my ability to do everything I loved.
I always looked to the body positivity movement with admiration; it helped me accept my curves, and comforted me when I was beating myself up about gaining weight or hating my thighs. But when I was sick, I had a harder time finding myself in much of the messaging of mainstream body positivity, so much of which seemed to begin and end with size acceptance; I now saw the ableism inherent in so much of what I had come to understand as “empowering.” I began to understand the ways in which body positivity had been commodified to fit a capitalist purpose that, despite its intentions, still designates some bodies as lovable, and others as in need of improvement. Instagram posts for major companies that featured able-bodied women of diverse shapes and sizes still felt exclusionary to me. I was housebound and unable to stand for long periods of time, so inspirational posts about exercising or loving your beach body only reminded me of everything my body couldn’t do. Size acceptance is immensely important, but there was a void in these posts—I realized that, disabled, or sick, or chronically ill people were largely being left out of the mainstream body positive conversation, despite their important and necessary perspectives on self-love and strength. I’d scroll pass posts on Instagram about “loving your shape” and “eating to stay healthy, not thin,” and “exercising to get strong, not skinny,” which were all sentiments that at one time I appreciated. But my shape was the least of my worries, and no matter what I ate or how much I exercised, I would not be strong or healthy.
In truth, I hated my body—this body made me think awful, sad thoughts, that made my future seem dark and uncertain, that made me want to tear away at it and remove parts of it. I hated that I hated it so badly I became indifferent to it. Sometimes I would look at the burn marks on my pelvis and thighs, trying to make myself care that I was marring my body, but to no avail. I went from being an independent person to being acutely dependent on my immediate family. I started to think about what living in this body, as it was, forever, would feel like. I didn’t know if I could do it; the constant pain, promises of treatments that were only making things worse. My doctor assured me that the surgery and treatments I was receiving had worked for others, and that my case was an outlier. So if he couldn’t fix me, who could?
