Despite affecting an estimated 1 in 10 individuals of reproductive age globally, endometriosis remains a condition where your zip code, your insurance, and the color of your skin can dictate how long you suffer before being heard. At Rooted in Violet, we believe that breaking this silence starts with naming the problem. By understanding the historical biases and modern barriers that stall our care, we can use tools like the ROOT Framework to turn silence into a healing strategy.

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The Statistics of Silence

Recent data from 2024 and 2025 reveal a staggering gap in the diagnosis and treatment of endometriosis for Black women.

• The Diagnostic Delay: On average, it takes 7 to 10 years from symptom onset for a woman to receive an endometriosis diagnosis. For Black women, this delay is often longer, with some studies showing they are diagnosed at ages 2.6 years older than their white counterparts.
• Likelihood of Diagnosis: Black women are 50% less likely to be diagnosed with endometriosis than white women, even when reporting similar or more severe symptoms.
• Misdiagnosis Rates: Black patients are frequently misdiagnosed with Pelvic Inflammatory Disease (PID) or uterine fibroids because providers often overlook endometriosis as a possibility.
• Funding Gaps: In 2023, the National Institutes of Health (NIH) allocated only $29 million to endometriosis research—less than half of the funding provided for conditions that affect far fewer people, such as Crohn’s disease.

Why the Gap Exists: Barriers to Care

The underdiagnosis of endometriosis in the Black community isn’t accidental; it is the result of layered systemic issues often described as a “bad layer cake” of barriers.

1. The Myth of the “White Woman’s Disease.”

For decades, medical textbooks incorrectly taught that endometriosis was a condition that primarily affected white, affluent women who delayed childbearing. This historical bias still lives in exam rooms today. Some Black women report being told directly by their doctors that endometriosis “is a white woman’s disease” and that the provider “didn’t know how to care for a Black woman” with these symptoms.

2. Medical Gaslighting and Pain Bias

Medical gaslighting occurs when a provider invalidates a patient’s genuine clinical concerns. Research shows that Black women’s pain is frequently underestimated and undertreated due to harmful stereotypes, such as the false belief that Black people have a “higher pain tolerance”. When we describe debilitating cramps, we are often told the pain is “normal” or “in our heads”.

3. Normalization of Pain and Cultural Stigma

Within our own communities, there is often a cultural “normalization” of menstrual pain. Generations of women have been told that “heavy periods just run in the family,” leading many to suffer in silence rather than seeking care. Additionally, taboos surrounding menstrual health and sexual pain can make it difficult to describe symptoms to a provider.

4. Access and Affordability

Even when a woman suspects she has endometriosis, the “bottom layer” of the cake—access—can stop her. High out-of-pocket costs for specialized MRIs, a lack of specialists in certain neighborhoods, and insurance denials for “elective” surgeries like excision create a wall between Black women and the gold-standard care they deserve.

Reclaiming the Narrative with the ROOT Framework™

You are the architect of your health. When the system tries to silence you, the ROOT Framework provides a blueprint for it to see you and provides support.

R – Reveal: Start by identifying your patterns. If your “bad periods” involve fatigue, painful bowel movements, or pain that radiates to your legs, write it down. Recognize that these signals are valid and deserve a medical investigation.

O – Offer: Share your observations with your provider using fact-based language. Instead of saying “it hurts a lot,” try: “My pain prevents me from going to work three days every month, and ibuprofen does not help”.

O – Outline: Be clear about what you need. If you feel you aren’t being heard, ask for a referral to an endometriosis specialist or an imaging test. If a doctor refuses, ask them to note the refusal and their reasoning in your medical record.

T – Take Note: Document every appointment and recommendation. If a treatment isn’t working, follow up and demand a pivot in your care plan.

Violet Sheet • ROOT Framework

Endometriosis & Pelvic Health — what to track, what to say, what to ask.

A fast, provider-ready guide built to help Black women advocate clearly—symptoms, patterns, questions, and next steps.

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Print/copy for personal use. Not medical advice.

A Call to Advocacy

Endometriosis is more than a “period problem”—it is a systemic inflammatory disease that can impact your fertility, your career, and your mental health. Breaking the silence means refusing to accept “normal” pain and demanding equitable care.

🌿 CTA: Don’t let your symptoms go ignored. Complete and download our Endometriosis and Pelvic Health Violet Sheet to help you use the ROOT Framework at your next appointment and join our community of women rising for better health.

References

• De Corte, L. (2025). The long road to diagnosis: Understanding endometriosis delays. Journal of Clinical Medicine.
• Massachusetts Health Quality Partners & Endometriosis Association. (2025). A Patient-Centered Research Roadmap to Advance Equity in Endometriosis Care for Black Women.
• National Institutes of Health (NIH). (2023). Endometriosis research funding and statistics.
• PMC – NIH. (2022). Revisiting the impact of race/ethnicity in endometriosis.
• Rowland, G. D., et al. (2025). “It’s like your body is fighting against you”: Qualitative study of Black women’s endometriosis experience. BMC Women’s Health.
• Sebring, J. C. H., et al. (2023). Medical gaslighting and the systemic invalidation of women’s pain. Social Science & Medicine.
• World Economic Forum & McKinsey. (2024). The Gender Health Gap: Unlocking economic benefits through health equity.