Endometriosis Changed My Life. So Why Did It Take 11 Years to Diagnose?

I was 14 when my period started. That same year, the pain started, too. For the next decade of my life, I’d miss work and school, skip birthdays and holiday parties, sleep through weekends and cancel plans, curled up with a heating pad trying to soothe the persistent ache I felt in my pelvis. I’d visit doctor after doctor who would dismiss my pain as insignificant or nonexistent, failing to realize how deeply it was shaping who I was and how I existed in the world.

author at age 14

The author at age 14.

Courtesy of Elana Ross

Then, at 25, it took just one doctor—a doctor who listened—to finally give me a diagnosis: I had endometriosis, a disorder that causes tissue resembling the lining of your uterus to grow outside of it. I had a single procedure to finally remove those lesions, and post-surgery, it felt like a new beginning, a type of freedom. But I was still overwhelmed and scared. I wondered: Who would I be without my pain?

The first time I ever sought help for my severe period cramps, my general practitioner immediately mentioned endometriosis but told me there was nothing she could do. As it worsened, my OB-GYN dismissed the possibility of the disease because my pain was more frequent than just during my period. By now, I’ve had an endocrinologist tell me that endometriosis “is less understood than cancer,” but back then, sitting in the doctor’s office, it felt silly to disagree with a medical professional. The power dynamic doesn’t favor the patient, and it’s easy to feel like you have to shut up and accept what they say.

Whenever I sought help from gastroenterologists and new OB-GYNs, they’d find a reason not to treat my pain and send me on my way. While I wanted to find a solution, I listened to doctors tell me over and over that what I was experiencing “wasn’t that bad,” that it was normal, all in my head, and not worth the work to diagnose. I was demoralized and, at times, felt like I must be crazy.

So I gave up. I knew something was really wrong, and believed I knew what it was, but I decided to just live with it. I was, by all appearances, healthy. Yet I was living with chronic pelvic pain, its various mental and physical side effects, and a persistent feeling of resignation. I stopped talking about how I felt; there are only so many times you can complain before it consumes how people view you—and how you view yourself. I labeled myself as whiny, lazy, fat, introverted. I couldn’t tell where the real me stopped and my pain began.

I was also angry, and I kept getting angrier. Perhaps most importantly, I started a new job at Planned Parenthood. I was fighting every day for people to have control over their own bodies and their own health, working to make sure they had access to high-quality, affordable healthcare. It made me realize I had completely stopped fighting for myself. Now I had a job with great insurance, a team that was willing to cover for me so I could take time off, and a women-led senior staff who listened when I said I needed to deal with my pain. So I did.

the author before her operation

Before my laparoscopy, a minimally invasive surgery done to treat endometriosis.

Courtesy of Elana Ross

I worked to find a pelvic pain specialist who believed in me. I received a clinical diagnosis of endometriosis and had it successfully treated through surgery. In the end, I had only one lesion; one of the many mysteries of endometriosis is that the number of lesions you have doesn’t correlate to how much pain you’re in. While I knew this, a part of me still felt illegitimate, like I didn’t actually require surgery, or that I couldn’t have really been hurting that much.

During my laparoscopy, a minimally invasive surgery done to find and remove the endometriosis lesions, my surgeon also took out my appendix as a precaution, as he does with every endometriosis patient. When the toxicology reports came back, I received a second blow: I had also been living with chronic appendicitis. I was furious, knowing that if I had chosen the first surgeon I met with, who never once mentioned removing my appendix, I could have completed the entire process only to be left with another ticking time bomb and its resulting pain. I was also relieved; finding out I also had appendicitis gave me validation that my pain had been real. Appendicitis was also something that people could understand and sympathize with—it’s mainstream.

But that relief felt traitorous to my own experience. People with endometriosis are often told they’re overreacting, that they’re wrong about what they feel, and they don’t need—or deserve—a diagnosis. I heard it from the medical community, from my friends and family, and eventually, I internalized it. To write off my pain as simply a result of the appendicitis would discount the bravery it took to fight for my diagnosis and treatment. It would also be false—my endometriosis pain was real, and it was agonizing.

People with endometriosis are often told they’re overreacting, that they’re wrong about what they feel, and they don’t need—or deserve—a diagnosis.

My experience is part of the too-long history of women’s pain being ignored, even by female doctors. That disregard is even more true for women of color; a 2017 survey showed that 32 percent of African Americans reported being discriminated against when going to a doctor or health clinic, a huge contributor to our national maternal mortality crisis. And unfortunately, well-meaning OB-GYNs often don’t have enough training with this particular disease. As part of the 10 percent of women who have endometriosis, my diagnosis timeline of 11 years is about the national average.

Now that the pain is gone, I’ve started to reassess who I am without it. I think I’m still an introvert. Maybe I’ll choose to be busier, more social, or maybe I won’t. But after 11 years of confusion and discomfort, I do know that I’m tenacious, persistent, and resilient. I can see, finally, that I am truly strong. I stared down a maze of medical hurdles and social ignorance and screamed: “Someone fix my fucking uterus.” And it wasn’t my pain talking. It was me.

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