My Disease Is Not Benign In Any Sense of the Word

A few years ago, I went to the emergency department because I was experiencing the worst pain of my life. I thought my appendix had burst, but after an ultrasound followed by a CT scan, the doctor determined it was a “benign ovarian cyst.” He said it as if I should be relieved, and maybe I was in that moment. But in the months and years that followed—as I learned that the cyst was endometriosis and tried in vain to manage pain that flared unpredictably and never quite went away—it felt anything but benign.

Endometriosis is an inflammatory disease in which tissue similar to the inside of the uterus grows outside the uterus. It affects about 10% of women, and the main symptoms are chronic abdominal and pelvic pain. It can also cause infertility, compromise organ function, and increase the risk of ovarian cancer—the kind the doctor was reassuring me I did not have when he called my cyst benign.

Colloquially, benign means “gentle and kindly.” I can tell you it didn’t feel gentle when I passed out on the side of the road because I was in excruciating pain from walking just one block. It didn’t feel kindly when I developed a permanent burn on my stomach from near constant heating pad use. I’ve had endometriosis surgery twice and both my surgeons were kind, but nothing about being cut open is gentle. 

This is a problem of semantics. The doctor did not mean benign as in “gentle and kind.” In medical speak, benign means “not harmful,” and more specifically is used as an antonym for “malignant.” The word malignant distinguishes cancerous tumors from non-cancerous ones.  

The language doesn’t just shape how doctors talk to patients; it shapes what questions researchers ask.

Endometriosis is certainly not benign in the colloquial sense. And it is barely benign in the medical one. Like many cancers, it progresses in stages. It spreads and can subsequently appear on nearly any organ of the body. Endometrial lesions create their own blood supply to sustain themselves. Recently, studies have found that endometriosis tissue carries many of the same genetic mutations as cancer cells. The surgery I had (a peritonectomy) is primarily used as a cancer treatment. If during that surgery my doctor didn’t remove every cell of endometriosis tissue, it will likely grow back. And while there are ways to treat it, there is no cure.

Endometriosis behaves in ways that challenge the tidy boundary between “benign” and “malignant.” That doesn’t make it a cancer, but it should make us question why this binary language persists when there are so many shades of grey. Discoveries like those about the genetic similarities between endometrial and cancer cells raise an important question: How much sooner might we have understood the biology of this disease if it hadn’t been categorized as benign? The language doesn’t just shape how doctors talk to patients; it shapes what questions researchers ask.

There is still so much we don’t know about endometriosis—notably how it develops, why some people get it while others don’t, and how to cure it. These questions have remained unanswered because there has not been enough research.

When we call a disease benign, we are telling the world it doesn’t deserve to be understood.

And, of course, there hasn’t. If you’re a grant reviewer tasked with reading dozens of applications and see a proposal to study a benign disease, you’d probably opt to fund something else. Even the people who fully understand the medical term will be biased, consciously or unconsciously, by the colloquial meaning. I would, too, if I didn’t know so intimately what it is like to live with a so-called benign disease.

Describing endometriosis as benign is symptomatic of an inherent misogyny in medicine, even in specialties like gynecology that are devoted to women’s health. Women already have such a hard time getting doctors to take their pain seriously. This is illustrated by the fact that it takes an average of 6-10 years and several doctors to receive a diagnosis of endometriosis. Women’s pain, especially pelvic pain, is so normalized that many never even get as far as going to the doctor.

Words are not benign. They have the power to make patients feel dismissed and dissuade them from seeking necessary treatment. They have the power to shape research priorities and the chances of a cure ever being found. When we call a disease benign, we are telling the world it doesn’t deserve to be understood.

I have been an endometriosis patient for 4 years now, and a writer and editor for over a decade. “Benign” is an adjective that has done far too much harm. Just cut it.

The views expressed here are the authors’ own and do not necessarily represent the views of Public Health Post or Boston University School of Public Health.