I spent much of my formative childhood years bested by an invisible foe; a foe who mastered the art of sleep thievery; a foe with direct sword access to my stomach; a foe who seemed to quadruple in strength when my period struck. I couldn’t sleep through the night and found myself on a cocktail of Midol and Tylenol to dull the incessant stabbing abdominal cramping. I didn’t know it then, but I was one of 200 million women worldwide suffering from the silent disease of endometriosis, or “Endo” for short, a disease where cells similar to the uterine lining wreak havoc by growing outside of the uterus.
The astonishing thing is that even though both of my parents are physicians specializing in this disease, I went a decade without receiving my diagnosis. I remember being pulled out of school multiple days a week as a young child to be injected, prodded by ultrasound wands, and questioned about my pain by an alphabet soup of specialists: gastroenterologists, pediatricians, radiologists, surgeons, and gynecologists. My parents and I went through medical experts like tissues. Once one was used, we pulled another out of the never-ending—and always disappointing—box. Why did it take so long to find answers? As I discovered years later, my mother suspected that I had endo early on, but doubted her judgment because physician after physician told us they had the answer to my pain. They never did.
For years, I was telling myself the pain was all in my head.
The reason endo is so hard to diagnose is that its symptoms can span across all organ systems– from the gastrointestinal to the urological to the gynecological, including even general fatigue and exhaustion. A whole-body approach is necessary, but that approach doesn’t fit neatly within our health care protocols. The gastroenterologist looked at my gut, the general surgeon looked at what they could cut out, the ultrasound radiologist looked at what could be visualized on imaging, and so on.
Since the disease does not show up on imaging or bloodwork, the acute dilemma with Endo is that you can’t make an accurate diagnosis without surgery. But there’s a silver lining: in the same moment that endo is confirmed, the excision surgery can remove the disease. In combination with holistic and integrative therapies, this gives patients the best hope at beating Endometriosis, which is how I healed after years of suffering.
The mysterious quirkiness of this disease meant that for years I was telling myself that maybe the pain was all in my head. It was only when my mother finally trusted her intuition and training that I had a name for my pain. She started by guiding me through pelvic floor physical therapy, integrative nutrition, and gut healing and ultimately found me an endometriosis excision surgeon. Excision surgery—the gold standard of endometriosis surgery—confirmed my diagnosis and removed my Endo lesions.
At 18 years old, the surgery was a terrifying experience. The mere idea of an operating table and sterile tools penetrating my body terrified me. But my biggest fear was that the surgeon would not discover any Endo, that my invisible foe would remain invisible and I’d have to resign myself to a life of suffering.
I remember groggily stirring in the recovery room, my mother standing over me. She told me there was Endo; lots of it—in my abdomen, pelvis, ovary, and on my bladder. My foe was no longer a phantom. It was an adversary with a face and a name, and I had finally been strong enough to put up a fight. But most women don’t have central figures in their life armed with Endometriosis knowledge, let alone two parent-specialists in the field and excision surgeons; most don’t even have a doctor who knows basic information about a disease that continues to plague millions of women around the world.
It seems inconceivable in today’s world that a condition that affects so many women could retain such anonymity. But the singular complexity of this disease makes its invisibility understandable. It also suggests that for this disease to come out of the shadows, the medical community will need to make a singular effort worthy of the complex challenge.
My Endo journey taught me how vital it is for patients to believe in themselves and to advocate for themselves. With individual advocacy and more widespread education, Endometriosis has a fighting chance of becoming part of the conversation. Just because it isn’t seen on imaging does not mean that it shouldn’t be heard in the national discourse. I imagine a world where Endo is invisible no more.
