1 in 10 women have endometriosis. Let’s talk about it.

By Libby Bahr
Guest Author

Endometriosis: An incurable disease resulting from endometrial-like tissue growing outside of the uterus, onto other organs. This tissue can cause severe, chronic pain throughout the body, in addition to infertility, fatigue, brain fog, and more.

Here’s my definition: A seemingly invisible condition that lights your insides on fire, is rarely taken seriously, and quietly affects millions of people with uteruses every day.

A shocking 1 in 10 women have endometriosis, yet so many are misdiagnosed, not diagnosed at all, or spend an average of eight years searching for a proper diagnosis.

Why? Studies and physicians themselves state that sexism and implicit bias are key players.

“It’s not malice but a pervasive, implicit sex and gender bias in medicine that’s leading female patients to be misdiagnosed, neglected, dismissed as complainers, accused of being overanxious or told their symptoms are all in their heads,” said physicians who are fighting to change the system.

In 2020, I was finally diagnosed after searching for an answer to my debilitating pelvic pain for as long as I can remember. It often leaves me curled up in a ball with a heating pad, fighting back tears. “Cramps,” if you will.

It’s clear that this is unacceptable. How do we improve this process for future generations of women? I believe that the first steps toward creating any sort of change are to listen to each other and spread awareness.

Here’s my story.

At 16 years old, I fainted from menstrual pain. I was rushed to the emergency room, terrified that something was wrong with my body. After hours of waiting, there was no answer as to why I fainted. I was simply told that my period had nothing to do with it.

At this point in my life, I’d never heard of endometriosis. I had no idea what to look for or how to explain why I constantly felt like I was being stabbed from the inside. Because I was young and naive, I made a mental note that collapsing from period pain was normal.

Years later, I questioned this assessment. I made an appointment at a familiar women’s clinic and arrived with a full page of notes and an anxious stomachache. After explaining that I thought endometriosis was a possibility, my provider chuckled. “You are so young!” she waved her hand. “Honey, periods are just a part of life.”

Once again, I felt crazy. Weak. How do other women get anything done?

By age 23, I built up the courage to make an appointment with a new physician, and something shifted. She listened intently and read over my notes. When I brought up my concerns about endometriosis, she didn’t immediately shut me down. She explained that the only way to diagnose it was by performing laparoscopic surgery and that she had an opening four days later. I froze in the chair, sweating, but nodding.

After the whirlwind that was my first surgery, I received my diagnosis. In my life, I have never experienced such relief. I wasn’t being dramatic or crying wolf after all! I finally felt validated for the pain I had been living with every month since puberty.

Tears of relief pricked my eyes, but with momentary clarity came a rush of uncertainty. The weight of the unknown was lifted, but the weight of my new reality came crashing down on my shoulders.

Will I be able to have kids? What will I do when it grows back? How many medications will I need to try before something alleviates the pain? Will insurance cover my surgeries? Accepting that a disease is incurable is almost as frustrating as not knowing where the pain comes from at all.

Living with chronic pain creates distance within you — it often feels like I am a stranger in my own body. Endometriosis is wicked, after all. It is a multifaceted, unpredictable beast, switching from sharp, piercing pain to menacing aches before I can even tell the difference. It sure knows how to keep me on my toes.

Why is endometriosis underdiagnosed?

The only way to diagnose endometriosis is through laparoscopic surgery. Because it doesn’t show up during a pelvic exam or even a pelvic ultrasound, it is, by nature, very difficult to diagnose.

Factors like medical gaslighting play a part, too. Remember how long the average diagnosis takes? Someone with undiagnosed endometriosis is often told that they simply have heavy periods, or that they are exaggerating their pain.

Harvard Health contributor Laura Kiesel writes, “Trying to ignore the pain didn’t stop endometriosis from strangling my large intestines and adhering my ovaries and fallopian tubes to my colon. To gain actual relief from that agony, I needed surgery, and I might need it again.” Unfortunately for many women, it often takes years of explaining themselves over and over again before surgery is considered.

I would also be remiss not to mention the additional, detrimental bias women of color and transgender women face in healthcare.

We can’t fix this discrepancy by placing blame on physicians, though.

The issue is that young women are rarely taught how to advocate for themselves, especially in medical settings. I know I wasn’t. Preparing the right questions to ask and knowing when to seek another opinion is crucial.

Additionally, even in 2022, women are rarely believed when we speak up the first time or the second time, or ever. As a result, we question ourselves and ponder the validity of our pain. I believe the solution lies in prioritizing implicit bias training in healthcare and having uncomfortable conversations like these.

What can we do to spread awareness?

The best thing we can do is listen to each other’s stories. Learn from them. Share them. Understand that every day, people everywhere endure pain or hardships that they may never share.

To any men reading this: thank you for showing empathy and making it this far. We need your support as we advocate for our health. Statistically, you know several women who suffer from endometriosis: friends, coworkers, family members, neighbors. Maybe they’ve never talked about it. Maybe they haven’t been diagnosed yet. I guarantee that they appreciate you taking the time to understand what they’re going through.

My advice to anyone who has ever been told they have a “heavy period” is to listen to your body. Being miserable and consistently missing work, school or social events because of period pain is not normal.

I share my story to let those with similar challenges know that you’re not alone. Living with chronic pain can feel so isolating, but it does get better.

My diagnosis taught me to become my own champion and doubtlessly trust my instincts. I want every woman in pain to feel empowered to speak up for themselves, too.