Key Takeaways

Endometriosis significantly affects Black women, yet they often face delays and misdiagnoses compared to other groups.
Many medical myths contribute to the lack of proper recognition for endometriosis in Black women, resulting in longer diagnostic timelines.
The ROOT Framework offers a structured approach for women to advocate for their health during doctor visits.
Understanding endometriosis and using personal pain data empowers Black women to reclaim their health and engage with medical providers effectively.
Access resources like the Endometriosis and Pelvic Violet Sheet to aid in tracking symptoms and advocating for treatment.

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.

For too long, the pain many Black women feel during their periods has been dismissed as “normal” or something we just have to “tough out.” But constant, doubling-over pain isn’t a requirement of womanhood—it could be a sign of endometriosis.

Endometriosis (often called “endo”) is a condition where tissue similar to the lining of the uterus grows outside of it. This can cause severe pain, heavy periods, and even trouble getting pregnant. While it affects millions, Black women often face a much harder road to getting a correct diagnosis and the right treatment.

At Rooted in Violet & Co., we believe that your voice is the strongest medicine you have. This guide is here to help you understand the latest facts about endo and give you the tools to speak up for your health.

The Reality of Endometriosis for Black Women

The numbers tell a story that many of us know all too well. While endometriosis is estimated to affect about 1 in 10 women globally, Black women are often diagnosed much later than white women.

The Delay: On average, it can take 7 to 10 years from the time symptoms start to when a woman is finally diagnosed with endometriosis. For Black women, this delay is often longer because our pain is frequently dismissed or mismanaged.
The Misdiagnosis Trap: Research shows that Black women are more likely to be diagnosed with Pelvic Inflammatory Disease (PID) or uterine fibroids when they actually have endometriosis. While fibroids are common in our community, having one doesn’t mean you don’t have the other.
The Diagnostic Gap: A study published in Human Reproduction found that Black women were 50% less likely to receive an endometriosis diagnosis compared to white women, even when reporting similar symptoms. This isn’t because we don’t have it—it’s because we aren’t being heard.

Why is it Harder for Us?

There are several reasons why Black women face more hurdles when seeking help for pelvic pain:

Medical Myths: There is a long-standing, false belief in some parts of the medical world that Black women don’t get endometriosis as often as other groups. This bias leads doctors to look for other causes first.
The “Strong Black Woman” Trope: Many of us are taught to be strong and keep going, no matter what. This can lead us to minimize our own pain or wait years before asking for help.
Lack of Representation: For years, medical textbooks mostly showed endometriosis in white patients, making it harder for doctors to recognize the signs in women of color.

Using the ROOT Framework for Endometriosis Advocacy

You don’t have to navigate the healthcare system alone. We created the ROOT Framework to give you a clear plan for your next doctor’s visit. Use these steps to turn your observations into a strategy for better care:

R – Reveal What’s Going On

Start by becoming the expert on your own body. Don’t just tell the doctor, “It hurts.” Show them the patterns.

Track your cycle: Use a journal or an app to note when the pain starts. Is it only during your period, or does it happen during exercise or intimacy?
Look for “The Endometriosis Belly”: Do you experience extreme bloating or digestive issues that get worse around your period?
Rate your pain: On a scale of 1 to 10, how much does it stop you from working, going to school, or enjoying life?

O – Offer Your Observations

When you meet with your provider, share your data clearly. Instead of saying “My periods are bad,” try using fact-based language.

Example Script: “I have been tracking my pain for three months. I am using a heating pad daily, and I have had to miss two days of work each month because the pain is a level 8. This is not normal for me.”

O – Outline What You Need

You are a partner in your care, not just a passenger. Be clear about the tests or referrals you want.

Ask for specific imaging: While an ultrasound is a common first step, it often misses endometriosis. Ask if an MRI or a referral to an endometriosis specialist is right for you.
Demand a plan: If the doctor suggests “waiting and seeing,” ask: “What are we waiting for? If this pain continues, what is our next step for a definitive diagnosis?”

T – Take Note & Follow-Up

Before you leave the office, make sure you have everything in writing. This builds a paper trail for your health journey.

Document the visit: Write down what the doctor said and any diagnosis they mentioned. If they refused to run a test you asked for, ask them to note that refusal in your medical record.
Set your next date: Don’t leave without a follow-up appointment or a timeline for when you should expect test results.

Reclaiming Your Health

Endometriosis is a journey, but you are the architect of your health. By understanding the facts and using your voice, you can break the cycle of silence and get the care you deserve.

🌿 Ready to take the next step? Access our Endometriosis and Pelvic Violet Sheet. Upon completion, it transforms into a printable advocacy guide designed to help you track your symptoms and bring the right questions to your next appointment.

🎙️ 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 and Google Podcasts.

References

Zondervan, K. T., et al. (2020). Endometriosis. Nature Reviews Disease Primers.

Bougie, O., Nwosu, I., & Singh, S. S. (2019). Influence of race/ethnicity on the diagnosis and management of endometriosis. Journal of Obstetrics and Gynaecology Canada, 41(11), 1614-1619.

Centers for Disease Control and Prevention. (2022). Endometriosis and health disparities.

Missmer, S. A., et al. (2021). World Endometriosis Society consensus on the classification of endometriosis. Human Reproduction.

National Institutes of Health. (2023). Endometriosis: Overview and latest research.

Rooted in Violet & Co. (2025). The ROOT Framework™: A self-advocacy blueprint for women’s health.

Rooted in Violet & Co

Endometriosis in Black Women: Signs, Stats, and Advocacy