Words Matter When Diagnosing Endometriosis

In this recent article, the issue of language in diagnosing endometriosis is analyzed. According to their study, doctors aren’t adept at identifying the symptoms described by patients as endometriosis and women don’t feel that current modalities of measuring pain adequately express what they are experiencing. The article states that “many women use metaphors and similes to describe their pain. The most common metaphors were those that invoke violence.” Things like stabbing, poking, burning were all common descriptors and while some doctors do suspect endometriosis, many either dismiss these descriptors or misinterpret them as something else, creating a situation in which patients feel dismissed and their condition can take up to eight years or more to finally be diagnosed.

I personally have experienced this in my own journey with endometriosis. My diagnosis actually took almost 10 years with an additional 10 after that to receive the life-saving hysterectomy that I so desperately needed to finally address my condition. I often used the same types of descriptors to try to articulate the intensity and disruptiveness of what I was experiencing. I often felt as though doctors didn’t believe me. My language was interpreted as histrionic and melodramatic, a hypochondriac even, rather than a legitimate medical condition requiring prompt attention.

Part of the issue is that doctors are trained to diagnose disease through the lens of criteria that fit neatly within quantifiable boxes. In an attempt at creating a medical system that is consistent, neat, and easy to use, the human condition has been reduced to something simplistic rather than what it actually is — complex and often inconsistent. Endometriosis in particular is a condition that typically fails to fit into a neat, tidy box that can be measured on a scale of 1-10. It’s often less about pain per se and more about a multi-sensory experience affecting multiple systems and body parts, contrary to popular belief.

Asking someone to quantify this type of experience is reductive and incomplete. It also assumes that those with periods have some type of inherent awareness of what “normal” is. That’s an impossible ask. There is no such thing. Everyone is different and even if we could compare our experiences, it doesn’t guarantee that a person would have any concept of what their own period “should” be like if they didn’t have endometriosis.

A solution to this aside from educating doctors as to the language typically used to describe this condition would be to make asking more qualitative questions a routine part of wellness screenings. Doctors should throw that pain scale out the window and focus on things like:

“Do your periods keep you from performing your normal daily activities?”

“Do you often soil your clothing during your periods because the bleeding is so heavy that you don’t get to changing your feminine protection often enough?”

“Do you experience pain during sex on a regular basis?”

“Do you feel accompanying discomfort beyond just cramps such as stabbing, twisting, poking, burning, etc?”

If a patient answers yes to these questions, it would behoove a medical practitioner to refer them to a specialist. These symptoms are not normal even if they cannot be measured numerically on a scale.

The etymology of the word endometriosis comes from the Greek endos (inside), metra (womb) and -osis (disease). The condition isn’t systemic, it’s endemic. Utilizing a prescriptive approach to identify something that is inherently a uniquely individual experience does a disservice to those struggling with this condition. Doctors need to spend less time categorizing and assessing our bodies as fitting into some kind of predictable pattern of symptoms and more time listening to their words. After all, we know our own bodies better than anyone else.