Endometriosis is a condition in which tissue similar to the uterine lining grows outside the uterus, causing chronic pain, inflammation, infertility, and systemic effects that can disrupt nearly every aspect of daily life. Its average diagnostic delay in the United States is seven to ten years. For Black women, the experience of navigating that delay carries an additional burden: the well-documented pattern of clinical bias that consistently undertreats Black women’s pain.
Fawn Walker Montgomery’s journey with endometriosis is both specific — her pain, her body, her fight — and representative of a systemic failure that is not random.
The Years of Being Told It Was Normal
“I was told that pain during my period was normal,” Fawn recalls. “I was told women go through this. I was not told that the level of pain I was experiencing — the kind that kept me home from work, the kind that medication didn’t touch — was not normal. That it had a name.”
Endometriosis can cause pain that is genuinely disabling, and that pain is frequently minimized in clinical settings. For Black women, the minimization has an additional dimension: studies have consistently documented that Black patients’ pain is rated as less severe, treated less aggressively, and followed up less thoroughly than equivalent pain in white patients. The reasons are complex and rooted in history, but the pattern is clear.
The Diagnosis
When Fawn was finally diagnosed — after years and multiple providers — her response was complicated. Relief that her experience had a name and a clinical identity. Anger that it had taken so long. Resolve to use her experience to help other women, and particularly other Black women, navigate a system that had failed her.
“I encourage others to advocate for themselves and explore options that fit their individual needs,” she says. “Black women especially need to prioritize their health and well-being. And they need to know that the pain is not normal, that they deserve answers, and that they should not stop pushing until they get them.”
What Her Story Demands of the System
Fawn’s experience is not primarily a call for individual resilience. It is a call for systemic change.
The seven-to-ten year diagnostic delay for endometriosis is a clinical culture problem, a training problem, and a research funding problem. The racial dimension of that delay — the specific ways in which Black women’s symptoms are dismissed — is a racism problem. Addressing endometriosis disparities requires naming the racism, not just training providers to be “more aware.”
Concrete policy levers exist: increased NIH funding for endometriosis research with specific requirements for racially diverse cohorts; updated clinical training standards that treat pelvic pain in women as warranting urgent evaluation; insurance coverage for the diagnostic laparoscopy that remains the gold standard for endometriosis diagnosis; and accountability mechanisms for providers and health systems that produce racially disparate outcomes.
The pain was never normal. The system that allowed it to go undiagnosed for years is also not normal — and it should not be accepted as such.
Fawn Walker Montgomery shared her story with the Society for Women’s Health Research as part of their Women’s Health Perspectives series.