Endometriosis affects 1 out of 10 women in the United States, however many remain undiagnosed and suffer with debilitating pain without knowing why. The reason should make you mad.

Endometriosis a Painful Diagnosis that takes a Long Time to Make

The primary symptom of endometriosis is pain during menstruation. Endometriosis affects women equally across all racial/ethnic and socioeconomic backgrounds. The exact cause of endometriosis is still unclear, but one of the best theories is what is known as retrograde menstruation — menstrual blood flowing back through the fallopian tubes into the pelvic cavity instead of leaving through the vagina.

Healthline did a great series on endometriosis, including why so many women go undiagnosed even though they go to a doctor for their symptoms. And make no mistake—while there is no cure, there are treatments that can significantly improve the quality of life for women with this disease and diagnosis is the first step to treatment.

Why Are So Many Women Going Undiagnosed with Endometriosis?

So why are so many women going undiagnosed? Doctors dismiss their complaints!

According to Healthline:

Despite the fact that 1 in 4 women … said that endometriosis frequently interferes with their daily life — with 1 in 5 saying it always does — those that have reported their symptoms to healthcare providers [HCPs] are often dismissed. The survey also found that 15 percent of women were told “It’s all in your head,” while 1 in 3 were told “It’s normal.” Furthermore, another 1 in 3 were told “It’s part of being a woman,” and 1 in 5 women had to see four to five HCPs before receiving a diagnosis.

infuriating reason endometriosis is not being diagnosed

This trend is unsurprising given that women’s pain is often ignored or blatantly disregarded in the medical industry. One study found that “In general, women report more severe levels of pain, more frequent incidences of pain, and pain of longer duration than men, but are nonetheless treated for pain less aggressively.”

And it’s often due to this pain bias that many women won’t seek help until their symptoms reach an unbearable degree. Most of the survey respondents waited two to five years before seeing an HCP for symptoms, while 1 in 5 waited for four to six years.

“I hear about many endo patients being prescribed no pain medication,” explains McGaughey [former board member of the Endometriosis Association] who says she understands that doctors don’t want someone to become dependent on opioids or mess up their liver or stomach with anti-inflammatories. “But this has left many women and girls in extremely severe pain,” she says. “So severe you can’t walk, [with many] thinking they should just take two Advil.”

Endometriosis is unseen and often undiagnosed
Women are less likely to be administered painkillers in the ER, despite acute abdominal pain described to their health care provider.

Research supports her on this — as another study reported that women are less likely to be administered painkillers in the ER, despite acute abdominal pain.

Part of the problem comes down to believing women and girls, McGaughey adds. She remembers telling one doctor that she was experiencing terrible pain with periods, but that didn’t register. Only when she explained that it was causing her to miss multiple days of work each month did the doctor listen and take note.

“From then on, I quantified my pain for professionals in days of missed work,” she says. “That counts more than simply believing my accounts of days of suffering.”

The reasons for dismissing women’s pain are shrouded in cultural gender norms, but also, as the survey reveals, “a general lack of prioritization of endometriosis as an important women’s health issue.”

P.S. The rest of the Heathline article is great and well worth your time to read. You’ll learn something.

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Image credit: bandita, Healthline (Infographic), Sodanie Chea