For Shakita Thomas Kpetay and Shantana Hazel, the road to an endometriosis diagnosis was measured in decades, not months. Both women spent more than ten years navigating emergency rooms and doctor’s offices, only to be met with systemic dismissal and, in some cases, overt racial bias. Their experiences reflect a broader, persistent crisis in reproductive healthcare where the pain of Black women is frequently overlooked, minimized, or misattributed.
The Structural Barriers to Diagnosis
The diagnostic delay for endometriosis is a known clinical hurdle, but for Black women, the path is often obstructed by ingrained racial stereotypes. In 2024, the Massachusetts Health Quality Partners and the Endometriosis Association facilitated dialogues between patients and providers to address these disparities. Participants described a medical environment where symptoms were routinely disregarded, with some patients reporting they were explicitly told that endometriosis is a “White women’s disease.”
This persistent misconception ignores the reality of the condition, which the World Health Organization estimates affects 10% of women worldwide. Despite this, Black women remain statistically less likely to receive a timely diagnosis.
Shantana Hazel’s experience illustrates the human cost of this bias. After suffering from painful symptoms since the age of 11, she was eventually diagnosed at 25. During those intervening years, she encountered what she described as medical racism and gaslighting, including one instance where a provider told her that “you people should be stronger than that.” For Kpetay, who was diagnosed in 2020 after her disease had progressed to “stage four,” the medical system often offered only temporary band-aids, such as birth control, which masked symptoms rather than addressing the underlying inflammatory condition.
Data Gaps in Current Research
While awareness is shifting, scientific progress is still struggling to catch up with the demographic reality of the disease. In 2023, Connecticut became the first state to mandate a statewide endometriosis biorepository, known as EndoRISE, to better understand the cellular mechanisms of the condition. Researchers at The Jackson Laboratory (JAX) and UConn Health have begun mapping how nerve and immune cells interact in endometriosis lesions, with findings published on Oct. 30 in Nature Communications.
However, the repository itself faces a representation crisis. A 2026 paper detailing the program revealed that 76.8% of enrolled participants identified as white, while only 8% identified as Black—a significant underrepresentation in a state where Black residents comprise roughly 13% of the population. This skew is partly due to the program’s initial reliance on surgical samples, which inherently excludes patients who are never referred to surgery.
To bridge this gap, the program is currently expanding its collection efforts to hospitals in the Hartford area and exploring non-surgical sample collection methods. These efforts are part of a larger, urgent push to ensure that research priorities reflect the lived experiences of all patients, an objective outlined in a research roadmap released in February 2025 by the Patient-Centered Outcomes Research Institute.
The medical community is now moving toward new guidance that mandates a more proactive approach to menstrual pain. Clinicians are being encouraged to take a rigorous history of any pain that disrupts a patient’s work, school, or daily life. For patients, this means keeping a detailed log of the severity, duration, and impact of their symptoms to present as concrete evidence during consultations.
The current standard of care suggests that if a provider continues to brush off unexplained pelvic pain, a second opinion is not just an option—it is a necessary step for patient safety. Sudden or unusually severe symptoms remain a red flag that warrants immediate urgent care evaluation. Yet, even with these guidelines, the ultimate test remains the interaction between the patient and the physician.
Kpetay noted that one central question is how providers can truly center patients in their care, asking, “How do we still make sure we are not overlooking the knowledge the patients have of their own bodies?”
Kpetay and Hazel have transitioned from patients to advocates, working to shorten the search for answers for the next generation. Kpetay co-authored Remembered and Living Text: Black Women Living With Endometriosis to provide the social and historical context often missing from clinical encounters. Despite these localized successes, the central question remains: will the next 11-year-old who voices her pain be believed the first time she asks for help, or will she be forced to spend the next decade fighting for the care that should have been provided at the start?
