What Endometriosis Patients Want Healthcare Professionals to Know About Endometriosis

If you read that title again, it may seem strange to you. Patients wanting physicians to know more about a medical condition? Isn’t that a little backward?

Although this debilitating health condition afflicts nearly 200 million individuals globally,¹-² endometriosis (en-doe-me-tree-O-sis, “endo” for short) remains misdiagnosed³ and ineffectively treated⁴ due to the scarcity of research funding⁵ and specialized medical training,⁶ as well as due to stigmas⁷ and biases⁸-¹⁰ that impede patients’ timely access to healthcare.

Studies have shown that it can take six to twelve years¹¹ and consultations with five or more doctors¹² to diagnose endometriosis. Once a person is finally diagnosed, management remains challenging given the systemic¹³ nature of the disorder and its impact on the patient’s whole body, mental health, and quality of life.

Endometriosis patients have the added burden of having to be tireless advocates for their condition to catalyze change in how endo is perceived, discussed, diagnosed, and treated worldwide.

Here are 10 research-backed truths that endometriosis advocates would like medical staff (and the general public) to know about endo.

Traditional definitions describe endometriosis as a condition where the endometrium (the lining of the uterus) grows outside the uterus as an ectopic or rogue form of the “normal” endometrial tissue. However, research analyzing immune cell dysfunctions and genetic pathways for endometriosis has demonstrated that endometriosis lesions have qualitatively different, pro-inflammatory and fibrotic properties than the “normal” endometrium that lines the uterus.¹⁷ Endometriosis…

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