Chronic pelvic pain, gastrointestinal distress, painful menstrual periods, spotting, and infertility: these are just a few of the common symptoms of endometriosis, a chronic illness that affects about 190 million people worldwide.
Despite impacting about 10 percent of all women and girls, endometriosis remains one of the most underdiagnosed chronic diseases. It takes about seven to ten years to diagnose after the first symptoms, and for Black women, this process can take even longer. They are 50 percent less likely to be diagnosed with endometriosis than white women, according to some studies.
Last month, the Massachusetts Health Quality Partners and the Endometriosis Association released a “roadmap” that outlines the lack of research on the chronic disease and how this gap deeply affects Black women and their diagnoses. The researchers spoke to numerous patients about their experiences, showing that increased research, support, and activism are needed to improve healthcare for Black women.
What is endometriosis?
With endometriosis, tissue similar to the uterine lining grows outside of the uterus, causing inflammation, forming scar tissue, and setting off agonizing symptoms. Individuals with this chronic illness experience difficulties in all aspects of daily life, from work and school to intimacy and family care.
While endometriosis can affect women from their first menstrual period to menopause, it is most commonly found in women in their 30s and 40s. It is unknown what specifically causes the illness, and it can have a severe impact on a person’s life, from their mental health to their social life.
One of the biggest difficulties that endometriosis can induce is infertility, making pregnancy much more difficult to achieve.
The hurdles for Black women with endometriosis
In healthcare, it is not unusual for women’s pain to be dismissed. This is even more common for Black women, who are usually undertreated for their pain. This population is less likely to be diagnosed with the chronic disease, are diagnosed at older ages, and receive lower-quality care. Dismissal of symptoms, misdiagnoses, and medical gaslighting were common experiences for this study’s participants.
Historically, endometriosis was falsely considered to be more of a “white women’s disease,” leaving Black women to remain untreated and undiagnosed.
Kevin McRae, MD, FACOG, an OB/GYN based in Columbus, Georgia, said that unfortunately, this has been the reality for decades.
“Our profession as a whole has a horrible track record when it comes to listening to the complaints of people of color, especially women,” Dr. McRae said. “There is definitely a level of mistrust with the medical profession that spans generations. Keeping this history in mind, we have to do our due diligence to fully evaluate and empirically treat women with endometriosis.”
Black women also experience more barriers to healthcare access, including high out-of-pocket tests and treatments. When there isn’t enough research to back up the success of medical interventions, insurance companies are less likely to cover the disease’s treatment options.
“Being an active listener can significantly enhance a patient interaction and strengthen the trust between the provider and the patient,” Ashanda Saint Jean, MD, FACOG, and OB/GYN based in New York, tells BDOPro.
When finally diagnosed with endometriosis, Black women experience limited treatment options, like as birth control or hysterectomies. More often than not, they have to advocate for themselves to try alternative types of pain management such as acupuncture or pelvic floor therapy. Some are even given treatment plans without fully understanding the potential side effects. “Given the complexity of endometriosis and its impact on a person’s quality of life, it is crucial for all healthcare providers to develop effective communication skills that enable patients to navigate this challenging journey, gain empowerment, and become self-advocates,” adds Dr. Saint Jean.
How these disparities can be addressed
To provide multi-disciplinary care plans for Black women with endometriosis, medical providers should prioritize improved education and training. Providers should also implement standardized protocols like annual screenings to ensure the women are getting proactive treatment.
There should also be a focus on patient education and self-advocacy, where women can learn to manage their treatment plans and be in charge of their decisions. In an ideal world, all women can voice their experiences to medical professionals, be believed, and be treated accordingly.
“Every complaint of pain is valid until proven otherwise,” said Dr. McRae. “It is not always obvious.”