March is endometriosis awareness month. Endometriosis, a disease in which tissue similar to the lining of the uterus grows outside of the uterus, affects 1 in 10 women, or 190 million individuals worldwide. Although endometriosis leads to chronic pain and fertility issues and can impact bowel, urinary, and sexual function, it may take up to 7 to 10 years after symptoms appear to be diagnosed – and some, especially women of color, never receive a proper diagnosis at all. Even when properly diagnosed with endometriosis, women of color disproportionately face improper treatment and poor surgical outcomes, leading to a lifetime of unjust pain.
Historically, endometriosis has been thought of as a “white woman’s disease.” In the mid-1900s, researchers concerned with the declining birth rates among the upper class demonstrated higher rates of endometriosis and infertility among white patients in private hospitals compared to Black patients in public hospitals – a method riddled with bias and confounding. Despite its flaws, research like this went on to influence the education and practice of future health care providers, with misconceptions about endometriosis and race even appearing in foundational textbooks of gynecology.
Unfortunately, biases in endometriosis diagnosis continue to prevail today, largely due to the disease’s primary symptom: pelvic pain. As described in one 2016 study, Black Americans are often undertreated for pain compared to white Americans. Specifically, it was found that half of a sample of medical students and resident physicians endorsed false beliefs about biological differences between Black and white people, such as that “Black people’s skin is thicker than white people’s skin.” Moreover, they were found to rate Black patients’ pain levels as lower in comparison to white patients and even made less accurate treatment recommendations.
Stereotypes regarding the prevalence of endometriosis and the experience of pain among patients of color are detrimental, making patients less likely to seek medical attention for their pain. In fact, the mean age of endometriosis diagnosis for Black women was found to be 2.6 years older in comparison to white women. This disproportionate experience of pain is unjust, and change is needed now – from research to the clinic.
Research on the relationship of endometriosis to race does exist but is often limited due to confounding factors like socioeconomic status. For example, one study reported that Black women were less likely to be diagnosed with endometriosis in comparison to white women, while Asian women were more likely to be diagnosed than white women. Yet, the study notes that these findings may be influenced by high costs of health care, a lack of health insurance, or a lack of access to quality care. Meanwhile, another study that compared endometriosis prevalence among women of different races with equal socioeconomic status found there to be no difference between the groups. Needless to say, clarity is needed.
Besides research, mending the patient and provider experience of endometriosis diagnosis and treatment is critical. In a 2022 study, it was found that people of color undergoing treatment for endometriosis experience higher rates of surgical complications and open surgeries, rather than a less invasive surgical method like laparoscopy. For example, bowel injury and reoperation were much higher among Black patients than white patients. Black and Hispanic patients also experienced higher rates of oophorectomies, especially at younger ages, where the ovary is removed rather than the surgeon intricately cutting out the endometrial tissue to spare the ovary– having potential implications on fertility.
As both patients and providers, how can we prevent women of color from experiencing this unjust pain and better diagnose this disease?
As a provider, it is imperative to consider the diagnosis of endometriosis for patients presenting with menstrual pain, pelvic pain, and infertility, regardless of their race. When it comes to endometriosis, patients may have unique clinical presentations as symptoms like pain may be influenced by psychosocial factors and cultural norms. Moreover, it is important for providers to acknowledge that racial bias is still present in medical education materials and work to prevent further misinformation. Finally, when treating patients, it is critical to provide patients equal access to all possible treatment options and explore treatments with a culturally sensitive lens.
As patients, keeping symptom diaries and a detailed family history may assist with a swift diagnosis of endometriosis. Additionally, patients may find empowerment by joining social media advocacy groups with other patients going through similar experiences. Finding their voice through support methods like these may assist patients in feeling empowered to ask about their treatment options or to be referred to another provider if they are unsatisfied with their current treatment.
Innumerable individuals experience the pain of endometriosis every day, and women of color are unjustly bearing the additional pain of biased diagnoses and treatment. By empowering researchers, providers, and patients to take action in understanding the relationship between endometriosis and race, as well as reducing bias in health care, we can prevent a lifetime of unjust pain.
Taytum Kahl is a medical student.
