When we talk about chronic health conditions, the word “common” can be misleading. While statistics tell us how many people are living with a disease, they don’t always tell the story of who is being left out of the count.
Endometriosis is one of the most widespread gynecological conditions in the world, yet for many Black women, the question isn’t just “how common is it?” but “why is it so hard for me to get a diagnosis?” At Rooted in Violet & Co., we believe that understanding the data is the first step toward self-advocacy. By looking at the numbers through a culturally relevant lens, we can bridge the gap between clinical statistics and our lived experiences.
Why the “1 in 10” Statistic is Just the Tip of the Iceberg
Because endometriosis requires surgery for a definitive diagnosis, millions of women live in the “undiagnosed” category. Several factors contribute to why these numbers are likely much higher in the Black community:
1. Normalization of “The Struggle.”
In many households, heavy bleeding and debilitating pain are treated as a “rite of passage”. When we are told by elders or peers that “cramps are just part of being a woman,” we are less likely to seek medical help early on.
2. The Pain Management Bias
Studies consistently show that Black patients receive less pain medication and slower intervention for abdominal pain in emergency rooms. If a provider doesn’t believe your pain is a “9 out of 10,” they are unlikely to order the specialized imaging or surgical consults needed to find endometriosis.
3. Lack of Specialized Care
Endometriosis is a complex systemic disease that requires specialists. In many underserved communities, there is a lack of access to minimally invasive gynecologic surgeons who know how to identify “atypical” endometriosis lesions that may appear differently on darker skin tones or in different pelvic locations.
e access, and supporting one another, we can make a meaningful difference. Remember, you’re not alone, and help is available. Together, we can take steps to manage endometriosis and improve the lives of all women affected by it.
Using the ROOT Framework to Navigate Your Care
If you suspect you are part of the “1 in 10,” you don’t have to wait 7 to 10 years for an answer. Use the ROOT Framework to move from reactive healthcare to proactive wellness.
- R – Reveal What’s Going On: Be honest with yourself about your symptoms beyond just “cramps”. Are you experiencing pain during sex? Painful bowel movements? Chronic fatigue? Track these in a digital log or journal for at least two cycles.
- O – Offer Your Observations: When you see your provider, share specific, fact-based details. Instead of “I have bad periods,” say: “I have noticed that my pain is sharp and radiating to my legs, and it is not relieved by 800mg of Ibuprofen”.
- O – Outline What You Need: Be clear about your request. If you want to rule out endometriosis, ask: “Based on my symptom log, I would like to discuss a referral to a specialist for an excision surgery consultation”.
- T – Take Note & Follow-Up: Document every diagnosis and recommendation. If the provider suggests “waiting and seeing,” write that down and ask for a follow-up date in 30 days to re-evaluate.
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.
Breaking the Statistics
Knowledge is protection. By understanding that endometriosis is a common, serious, and treatable condition, we can stop the cycle of suffering in silence. You are not “just another number”—you are the architect of your own healing.
🌿 CTA: Do you need help with having the tough conversations with your doctor? Become a member today. Access our Endometriosis & Pelvic Care Violet Sheet to help you “Reveal” your patterns and take the first step toward a diagnosis.
🎙️ Listen to “Rooted in Violet” Podcast
Dive deeper into this topic with our podcast episode: Endometriosis and the Silent Struggle! Join us as we explore the struggles many women with endometriosis face, including misdiagnosis, delayed treatment, and outright dismissal by some healthcare providers. In this episode, we are breaking down why Black women’s pain is ignored, the lack of research in Black communities, treatment options, and how to advocate for proper care. Tune in for advocacy tips, advice, and resources to help you take control of your health. #Endometriosis #BlackWomensHealth #MedicalBias
🎧 Listen now and gain valuable insights:
💡 Why tune in?
- Get perspectives on Endometriosis
- Gain insight into the unique challenges Black women face
- Stay inspired and informed with every episode.
🔗 Subscribe to the podcast on Spreaker or find it on your favorite platforms like Spotify, Apple Podcasts, and Google Podcasts.
References
- Centers for Disease Control and Prevention (CDC). (2024). Endometriosis: Data and statistics.
- Massachusetts Health Quality Partners (MHQP). (2025). Advancing Equity in Endometriosis Care for Black Women.
- National Institutes of Health (NIH). (2023). Racial disparities in gynecological health outcomes.
- World Health Organization (WHO). (2023). Endometriosis Fact Sheet.
- Zondervan, K. T., et al. (2022). Endometriosis. Nature Reviews Disease Primers.