Endometriosis is a disorder in which cells similar to the endometrium—the lining of the uterus—grow outside of the uterus. Often impacted are the pelvic tissue, but endometriosis can also affect the ovaries and fallopian tubes and nearby organs like the bowel and bladder. These cells act similarly to endometrial tissue and break down and bleed with each menstrual cycle, creating a range of issues—from severe pain during menstrual periods, to fertility problems.
While endometriosis is estimated to affect anywhere between 3% and 18% of birthing people in the United States, many of these people do not receive diagnoses. Among those most impacted by the misdiagnosis and underdiagnosis of endometriosis are Black women, a fact which unveils care gaps within our current medical system. Electronic health records estimate that 70% of patients diagnosed with endometriosis are white, 6% Hispanic, 9% Asian, and 4.7% Black.
People with endometriosis can expect to wait between 4 and 11 years after the onset of their symptoms before receiving a diagnosis. While this is an issue affecting everyone with the condition, several factors make Black women especially vulnerable. Two years ago, actress and entrepreneur Tia Mowry joined in on the conversation about endometriosis on an Instagram live with us at Mama Glow and shared that it took several years for her condition to be diagnosed.
Some of this delay can be attributed to the lack of knowledge about endometriosis and the nature of the condition. Endometriosis is often characterized by its most challenging and life-altering symptoms like subfertility and pelvic pain. Additionally, the condition does not have a cure. This means that people look to work with care providers to manage their symptoms—not make the condition go away. Unfortunately, this does not fit within our current framework of care, which consistently reinforces the binary of disease and cure—chronic conditions (and pain) are perceived as characterological disorders with minor implications for one’s well-being, rather than medical diseases that warrant investigation and individualized treatment plans.
The position of pelvic pain as a primary symptom spotlights another factor contributing to racial disparities in the diagnosis of endometriosis—the fact of Black Americans’ systematic under-treatment for pain. According to several studies, Black patients are significantly less likely to be prescribed pain medication, and generally receive lower doses of pain medication when they are prescribed. One study reveals the blind spots of physicians, including the ones that claim to see the humanity of their Black patients. Members of the NCAA Division I medical staff assigned lower pain ratings to Black student athletes with a torn ACL, despite their white counterparts suffering from the same condition. The diagnosis of endometriosis is ultimately at the discretion of physicians, who may weave their personal biases into their interactions with patients.
These racial biases in pain assessment not only have long-standing effects, but they also have a uniquely charged history for Black women in the United States. Notions of Black women’s “obstetrical hardiness”, or the idea that they had a “primitive pelvis” ultimately underwrote the constant experimentation on their bodies during slavery. Medical schools and physicians would make several advances in the field of obstetrics and gynecology at the harm of Black women as a result. While the institution of slavery as it stood is long gone, the remnants of these beliefs evidently remain. Today, Black women still find themselves screaming to be heard in medical establishments that uphold beliefs regarding their imperviousness to pain.
The fact of Black women’s low rates of diagnosis does not paint an accurate picture of the prevalence of endometriosis among Black women. Rather, it paints one of the United States’ medical establishment as it stands—one that routinely disregards Black women and their pain. Grappling with the medical establishment’s entanglement with misogynoir is only one step in the journey to replace barriers to timely diagnosis with facilitators.