The troubling reason why endometriosis diagnosis is so complicated

Earlier this year, the European Society of Human Reproduction and Embryology (ESHRE) updated its diagnosis guidelines for endometriosis. This new information will help physicians around the world better diagnose and treat a condition that affects an estimated 10% of women, including 50% of women with fertility issues. But why has it taken so long to get this improved information?

Endometriosis is notoriously difficult to diagnose. Symptoms range from painful menstrual periods to nausea to urinary or bowel problems, and can vary from patient to patient. Additionally, many of these symptoms are similar to conditions like IBS and bladder conditions, resulting in false diagnoses.

No wonder, then, that it takes an average of 8-12 years for a patient to get an endometriosis diagnosis.

But for researchers Anne-Marie Boylan, Annalise Weckesser, and Sharon Dixon, as well as many patients who suffer from this condition, there’s more blocking the road to diagnosis than ambiguous symptoms. In a recent article, Boylan and her co-researchers point out that it also comes down to the gender health gap.

Women have been underrepresented and less respected as patients since ancient times. Even in modern societies today that claim to have equality for the sexes, jarring facts like these remain:

● Women’s pain tends to be taken less seriously and treated with lower doses of medications (or none at all)

● There is a general lack of comprehension regarding how severe or debilitating period pain can be.

● Doctors tend not to believe that women are experiencing pain, especially when, as in the case of endometriosis lesions, it might be hard to find physical evidence of a health condition.

● Women are expected to tolerate pain better - and even, in many cultures, to deserve it. (For instance, Boylan and her team quote a study in which women discussed feeling the expectation not to complain and that suffering is “a woman’s lot.”)

● Many doctors struggle to understand the difference between normal period pain and signs of endometriosis.

● Many endometriosis patients report being told or having it implied that their suffering is “all in their head.”

Fortunately, there are organizations and medical researchers who are trying to improve women’s healthcare, including endometriosis diagnosis, treatments, and maybe even a chance for a cure. I also wonder if the increased visibility of health conditions like endometriosis thanks to influencers and medical professionals with online presences, as well as celebrities like Amy Schumer, Susan Sarandon, Halsey, and Gabrielle Union, who have spoken about their struggles with this condition, has helped to draw more attention to it recently, maybe to some extent motivating the ESHRE guidelines change - or at least making it more widely reported.

Hopefully, research into endometriosis will continue to evolve, as will public awareness. Signs of progress like the new ESHRE guidelines offer hope that someday the suffering caused by endometriosis, as well as the prejudice and lack of knowledge patients face, will be things of the past.

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