Despite Statistics, Endometriosis Continues to Be Misdiagnosed

According to the Endometriosis Foundation of America, approximately 200 million people are affected by Endometriosis worldwide. There are Endometriosis organizations in nearly 40 countries, on almost every continent and the World Endometriosis Society works to promote the clinical practice, research, education, and advocacy surrounding endometriosis victims around the world. 

Yet, people with Endometriosis are misdiagnosed every day.

Reported symptoms include chronic fatigue, painful bowel movements, bloating, and chronic pain. Unfortunately, these patients are often misdiagnosed with lactose intolerance, irritable bowel syndrome, minuscule ulcers, and hernias. In the wake of pain during sex, urinary problems, and nausea, some patients are tested for STDs. What’s worse is that many individuals who are affected are too embarrassed or afraid to seek medical help because they’ve been taught that their suffering is normal and that experiencing pain during their period is just part of the post-pubescent experience. 

In 2017, writer Maya Dusenbery released a book titled “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.” In “Doing Harm,” Dusenbery exposes some of the injustices towards women in the medical system. She outlines various women-centric diseases and conditions—Endometriosis being one of them. 

In one particularly bleak segment of the book, Dusenbery describes a comment she’d read in an online Endometriosis support group. While online support systems are common (from Reddit to Tumblr to Instagram) and typically mean well, there are still cracks in the design. 

“A commenter on one Endometriosis Facebook group reported, ‘My doctor told me having a baby would help my pain. I’m only eleven.”  

The most painful symptoms of Endometriosis can start at a very young age, which is why it’s so frustrating when diagnosis takes a long time. Recently, Simon Harris, the Health Minister of Ireland, was confronted with the truth that people with Endometriosis feel like “second-class citizens.” All things considered, this revelation isn’t surprising. If approximately one in 10 women have Endometriosis, then why are Endo survivors so largely misunderstood?

A proper diagnosis gives patients the validity they need to live.

If an individual with Endometriosis thinks they have a gastrointestinal condition, an STD, or “complicated periods,” their very existence is called into question. With a misdiagnosis, it’s impossible to understand oneself or know how to heal. 

In New Zealand, for example, one young woman named Rebecca says she knew something was awry with her health when she experienced lifelong “problematic” periods. (Rebecca is a member of a tight-knit Endometriosis support community on Reddit. She is 29 years old.) Though “problematic” can be different for everyone, Rebecca defines her symptoms as “debilitatingly painful with profuse bleeding.” She bled outside of her cycle, as well.

Ten years ago, Rebecca’s pelvis and hips hurt too badly to walk. She was swiftly misdiagnosed with pelvic inflammatory disease and was tested for any STD that could cause discomfort and came out clear. Since then, she suspects the inability to walk was caused by deferred nerve pain. After she spent one year off of hormonal birth control, (Rebecca says she believes the birth control was masking her symptoms) she was admitted to the emergency room with suspected appendicitis.

“I had a laparoscopic appendectomy performed which yielded a completely healthy appendix,” Rebecca said.

Finally, she found an answer—the tests revealed she had Stage IV Endometriosis. Since then, she’s had laparoscopic excision surgery, which has brought relief to her life. 

“It’s hard to quantify how valuable having that diagnosis has been, and how profoundly it has impacted me,” she said.

Rebecca’s journey in diagnosis took almost 18 years, and she isn’t an outlier.

Dreadfully, many medical professionals haven’t even heard about Endometriosis, and so they don’t know how to treat it. “As there is currently no cause or cure, research is critical in moving forward with better and more treatment options that actually improve the quality of life for patients,” Rebecca added. 

Now, Rebecca advocates for people who have Endometriosis in the real world and on Instagram. She knows there is much left to uncover with this illness, both medically and socially. 

Across the globe, Juli, a 27-year-old writing professor in Wisconsin, has also lived with multiple misdiagnoses.

“So many wrong things,” she said. “I was told I didn’t have enough dietary fiber, so in high school, I was eating mad prunes and Benefiber powder. Like, gross.” 

Juli believes another obstacle in the way of proper Endometriosis diagnoses is the age in which symptoms begin to rise.

“When you’re young, nobody believes anything you say,” she said.

In her own experience, doctors brushed her off during her youth assuming that she didn’t want to be in school or that she didn’t understand what a period should feel like. 

“Symptoms [of Endometriosis] are so hastily overlooked,” Juli said. “I had such bad stomach issues as a kid and no one was like, ‘Well, her uterus is right there. Maybe it has something to do with that.’” 

Although Juli struggles every day to manage her pain, she agrees the proper diagnosis was lifechanging.

Now, she doesn’t have to walk around feeling like something isn’t quite right. An incorrect diagnosis or even worse, an improper prescription medication, can drive a person in circles. Now, at least Juli knows what she has and can research how to cope. 

As its name implies, chronic illness is chronic. These illnesses typically cannot be cured completely, and their symptoms are difficult to manage. The first step in knowing how to care for yourself is knowing who you are—people with Endometriosis are desperate for more research and solutions surroundings the topic. 

In “Doing Harm,” Dusenbery writes: “Chronic illness, with its invisible symptoms of fatigue and pain, is largely the burden of women. And it’s worth considering to what extent its relative neglect by the medical system is because it mostly affects women, whose complaints are so often heard not as a roar but as a whine.” 

So whether Endo survivors are roaring or whining, the point is for them to be heard, and to be heard correctly.