Pain Is Not Normal: Endometriosis, Delayed Diagnosis, and the Women Being Left Behind

"When I had my follow up with the doctor, I was told at that time this is a "White women's disease," and they didn't know how to care for a Black woman."

This is not a story from decades ago. This was shared in 2025, by a real Black woman living with endometriosis, in a report compiled by the Massachusetts Health Quality Partners and the Endometriosis Association (MHQP & Endometriosis Association, 2025).

Let's be honest. If that quote made you uncomfortable, it should.

Because behind it is a pattern that has persisted for generations. You double over in pain, you miss class, you cancel plans, and someone, whether it is a mother, a doctor, or a well-meaning aunty, looks you in the eye and says: "That's just how it is for some women." So you believe them. You take the ibuprofen. You push through.

But what if the pain was never normal? What if pushing through cost you ten years of your life? For millions of women, and disproportionately for Black and Caribbean women, that question has a very real answer. And that answer has a name: endometriosis.

To understand why endometriosis is so often dismissed, it helps to first understand what it actually is. Endometriosis is a chronic inflammatory condition in which tissue similar to the endometrial lining of the uterus grows outside of it, attaching to the ovaries, fallopian tubes, bowel, or bladder (Zondervan et al., 2020). Think of it as a clinical parallel to Barrett's esophagus: just as columnar epithelial cells replace the normal squamous epithelium of the lower esophagus through a process called metaplasia, endometrial-like tissue grows where it does not belong. And just as untreated Barrett's can progress to esophageal adenocarcinoma, untreated endometriosis carries its own serious downstream consequences, including infertility, ovarian cancer, and autoimmune disease (MHQP & Endometriosis Association, 2025). We take Barrett's seriously. The question is why we have not extended that same urgency to endometriosis. It affects approximately 190 million women of reproductive age worldwide, roughly 1 in 10, making it one of the most prevalent yet underrecognized gynecological conditions in existence (Zondervan et al., 2020).

For most women with endometriosis, the road to diagnosis is not a straight line. It is a revolving door of misdiagnoses, dismissed symptoms, and appointments that end with the same conclusion: nothing is wrong.

And yet something very much is wrong.

On average, women wait between four and eleven years from the onset of symptoms to receiving a confirmed diagnosis (ACOG, 2026). Several factors drive this delay. First, there is no reliable non-invasive diagnostic test for endometriosis. The current gold standard remains laparoscopy, a surgical procedure, meaning diagnosis requires a level of clinical suspicion that many providers simply do not have (ACOG, 2026). Second, endometriosis mimics other conditions. Symptoms like chronic pelvic pain, bloating, and irregular bleeding overlap with irritable bowel syndrome, pelvic inflammatory disease, and ovarian cysts, leading to years of treatment for the wrong condition (Frontiers in Medicine, 2025). Third, and perhaps most damaging, is the normalization of pain. When a woman says her periods are unbearable, she is too often told that is simply what periods feel like.

By the time many women finally hear the word endometriosis, they have already spent years being told the problem was in their head. It was never in their head. It was in their body. And it was being ignored.

For Black and Caribbean women, the diagnostic gap in endometriosis is not simply a matter of biology. It is the product of centuries of racial bias, medical mistrust, and systemic neglect woven so deeply into healthcare that many providers do not even recognise they are perpetuating it.

The myth that Black patients have a higher tolerance for pain is not a modern misunderstanding. It has roots in the pseudoscience of the 18th and 19th centuries, when physicians used fabricated biological differences to justify the brutal treatment of enslaved Black people in medical research (Hoffman et al., 2016). These ideas were debunked long ago. And yet a 2016 landmark study published in the Proceedings of the National Academy of Sciences found that nearly half of white medical students and residents still held false beliefs about Black patients' physiology, including that their skin was thicker and their nerve endings less sensitive, leading them to underestimate Black patients' pain (Hoffman et al., 2016). A meta-analysis of two decades of data confirmed that Black patients are 22% less likely than white patients to receive any pain medication at all (Meghani et al., 2012).

But the story does not end with provider bias. There is another layer that is rarely discussed: the role of historical medical trauma in shaping how Black patients engage with healthcare. Centuries of exploitation, from the Tuskegee Syphilis Study to the unconsented use of Black women's bodies in gynecological experimentation, have left a well-documented legacy of medical mistrust in Black communities (Bougie et al., 2022). When a Black woman delays seeking care, it is not because her pain threshold is higher. It is because history has taught her that the system was not built for her. And when she finally presents, often at a more advanced stage of illness, providers interpret that delay as evidence of tolerance rather than trauma.

For endometriosis specifically, these compounding biases are devastating. Black women are nearly 50% less likely to be diagnosed with endometriosis than white women, not because they have it less, but because they are believed less (Bougie et al., 2019). The myth that endometriosis is a "white woman's disease," a framing that dates back to early 20th century medical literature, persists in clinical settings to this day. We saw this in our opening: a Black woman told by her own doctor in 2025 that this was not her disease (MHQP & Endometriosis Association, 2025).

In Caribbean communities, an additional cultural barrier compounds this further. Menstrual pain is frequently normalized from girlhood, passed down as an expected part of womanhood rather than recognized as a potential symptom of disease. "Just drink some bush tea." "Your body is adjusting." By the time a Caribbean woman considers that her pain might warrant investigation, years may already have passed. And when she does seek care, she may find that specialist services are limited, referral pathways are slow, and the physicians she encounters have not been trained to see endometriosis in someone who looks like her (Orlando et al., 2022).

What makes this silence even more consequential is that endometriosis has a significant hereditary component. Women with a first-degree relative, a mother, a sister, a daughter, with endometriosis face a more than seven times greater risk of developing the condition themselves (Moen & Magnus, 1993). In communities where menstrual pain is never discussed, that inherited risk goes unrecognized across generations.

The result is a woman who has been failed at every turn. By history. By culture. By the system. And by the very medical education that was supposed to prepare her doctors to help her.

Endometriosis does not end at the pelvis. Its consequences reach into every corner of a woman's life, and for Black and Caribbean women who have already waited years for a diagnosis, those consequences are compounded. Up to half of women with endometriosis experience fertility challenges, and up to half of women with unexplained infertility are subsequently found to have the condition (Ellis et al., 2022). For women who spent years being reassured that nothing was wrong, the discovery that endometriosis has quietly affected their fertility can be devastating. Years of dismissed pain become years of lost options.

The mental health toll is equally severe. Women with endometriosis face a nearly three times higher risk of anxiety compared to those without the condition (Sanchez-Garrido et al., 2025). Depression rates are significantly elevated. And research has shown that women with endometriosis report equal or worse quality of life than those living with breast cancer or heart disease (Rempert et al., 2024). These are not minor inconveniences. This is what happens when pain goes unbelieved for years.

The economic burden tells the same story. The annual cost per patient approaches 9,579 euros, with the majority attributed to lost productivity rather than direct medical costs (Harder et al., 2024). Endometriosis costs the healthcare system as much as diabetes and heart disease combined. And yet it remains chronically underfunded and underresearched.

This is not a minor condition. It is a systemic crisis. And for Black and Caribbean women, it is a crisis decades of dismissal made inevitable.

But inevitability is not destiny. Things can change. And they start with us.

The solutions to the disparities described in this article are not complicated. They require will more than they require resources. And for those of us still in training, that will starts now. Medical education must close its endometriosis knowledge gap. Future clinicians need to be equipped to recognize this condition across diverse presentations, in women of every race, every background, every body type, and every pain expression (Society for Women's Health Research, 2024). Implicit bias training is not optional. It is a clinical necessity. The data is clear: when providers hold false beliefs about their patients' pain, patients suffer longer, present later, and lose options they can never get back (Hoffman et al., 2016; Orlando et al., 2022).

Culturally competent care must become standard practice. Providers must actively avoid dismissing pelvic pain, create space for patients to describe their symptoms without judgment, and engage in shared decision-making that respects the cultural contexts their patients come from (Abousifein & Leyland, 2024). And research must stop excluding the women most affected. Every study that centers only white women as the default patient produces knowledge that fails everyone else (Bougie et al., 2022). It is also why representation in medicine is not a diversity checkbox. It is a clinical intervention.

But beyond all of it, there is one thing that costs nothing and changes everything.

Believe your patient the first time

To every current and future physician reading this: when a woman tells you something is wrong, investigate. When she says her pain is unbearable, do not hand her ibuprofen and send her home. When she looks like someone the textbook said does not get this disease, remember that the textbook captures what is frequent. It does not capture every possibility sitting in front of you.

We are either part of the problem or part of the solution. The choice begins here. And it begins with believing her.

Saint James School of Medicine sits in the heart of the Caribbean, in St. Vincent and the Grenadines, training one of the most diverse physician workforces in the world. Over 31% of SJSM students identify as Black or African American, and many more come from Caribbean and Latin American backgrounds. We are already serving these communities, through health fairs, community outreach, and every interaction we have on this island. And when we leave St. Vincent for our clinical rotations and residencies across the United States and Canada, we carry that responsibility with us. The women described in this article are not a distant population. They are our patients, now and in every city we will ever practice in. Learning to see them, to hear them, and to believe them does not start someday. It starts here.