Medicine's Failure to Believe Endometriosis Patients

What Medicine Misses When It Refuses to Listen - Dr. Maria Rovito on Endometriosis, Invisible Pain, and the Ethics of Belief

Pain does not announce itself the way medicine prefers. It does not glow on an X-ray like a fracture, or spike neatly in bloodwork. Instead, it seeps - into missed school days, canceled plans, nausea mislabeled as anxiety, exhaustion dismissed as fragility. For people with endometriosis, a chronic inflammatory condition affecting roughly one in nine, this invisibility is not accidental. It is an ethical failure built into the system.

Dr. Maria Rovito, an Allied Health Sciences Instructor at the Albany College of Pharmacy and Health Sciences, is also a scholar with a PhD in American Studies from The Pennsylvania State University in Harrisburg, specializing in medical humanities, literature, disability studies, and women's and gender studies. Her dissertation, "Free Woman: An Autotheoretical and Feminist Disability Analysis of Endometriosis Pain in Medicine and Culture," examines the history and stigmatization of endometriosis, challenging its misrepresentation as primarily an infertility issue rather than a chronic pain disorder.

The naming of the disease is a good question. Endometriosis was originally named by John A. Sampson, a gynecological surgeon at Albany Medical Center in 1925, to describe how he believed it forms and grows: retrograde menstruation. His theory argued that endometrial cells flow through the fallopian tubes and attach to internal pelvic structures like the ovaries during menstruation. Current research shows Sampson's theory was incomplete or entirely incorrect. Cellular metaplasia, immune system dysfunction, and genetics also contribute to its formation. Sampson's term, "outside the uterus disease," is over a century old and remains outdated - yet it still shapes medical thinking. While we now classify subtypes - peritoneal, extrapelvic, ovarian, and deep-infiltrating endometriosis - we lack a term that fully captures the systemic, inflammatory, and progressive nature of the disease. If Rovito could choose a name to fill this gap, it would be "endometriotic disease," reflecting nerve involvement, recurrence, and systemic inflammation.

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The Ground Floor Is Listening

Rovito grew up in rural Pennsylvania, not far from the Appalachian Trail. "It was a tame childhood - Catholic school, ballet, violin, horseback riding," she recalls. She is still an avid hiker. College and graduate school went well. "I really enjoyed that time," she says, almost with surprise.

And yet, like so many with endometriosis, her pain began early - long before she had the language, or cultural permission, to name it.

"I had no idea what endometriosis was until I was about twenty-five," she says. "My aunt needed surgery. That was the first time I even heard the word."

Endometriosis is notorious for delayed diagnosis - on average, nearly a decade. Symptoms are routinely dismissed as "normal," exaggerated, or psychological. This failure is not incidental; it is historical.

"Gynecology has long been dominated by white men," Rovito explains. "Women weren't even admitted to Harvard Medical School until 1974. Even now, most of the people I know in this field are still men."

The values embedded in that history continue to shape whose suffering is taken seriously.

For much of modern medicine, endometriosis has been framed through a single concern: fertility. Infertility became the crisis to be solved; pain, something to manage - or endure.

"When fertility is treated as the highest priority," Rovito says, "other aspects of physical suffering get overlooked. And ethically, that's where things become challenging."

Those challenges appear most starkly in the exam room. A twenty-five-year-old patient, unmarried and without children, presents with debilitating pain. She wants relief now. Yet physicians routinely refuse procedures like hysterectomy - not because they are medically inappropriate, but because of a hypothetical future: a partner she hasn't met, a life she hasn't chosen, a desire she may never have.

"There's this idea," Rovito says, "that if you have a hysterectomy at thirty or thirty-five, then fifteen years later you might meet someone and suddenly want children."

Rarely, it happens. What is far more common is the suffering patients are asked to endure in the meantime.

"I can't determine what my life will be like fifteen years from now," she says. "None of us can."

Yet medicine routinely asks patients - especially women - to subordinate present pain to speculative futures.

Regret, ironically, is often invoked without evidence.

"The rate of regret after hysterectomy is actually quite low," Rovito notes.

What remains high is untreated pain - and the quiet message it sends: women's suffering is negotiable, conditional, secondary.

"If a patient says, ‘I don't want children,' a physician shouldn't get to overrule that," she says. "Medicine has been trying to dictate how women live their lives for over a century. Autonomy must include the right to accept the consequences of one's choices - whether that means preserving fertility or relinquishing it in exchange for relief."

Education, Empathy, and the Invisible

Compounding the problem is medical education itself. Women's health is often treated as an elective rather than core knowledge. The menstrual cycle, hormones, and reproductive systems are framed as specialized topics instead of fundamental physiology - despite interacting with nearly every system in the body.

As a result, clinicians encounter patients with chronic pain, gastrointestinal distress, nausea, and fatigue - and often do not know what to do.

"They don't recognize the symptoms of endometriosis when they see them," Rovito says. "That's part of the problem."

If endometriosis announced itself like a broken bone, Rovito wonders how differently patients would be treated by doctors, employers, and families.

"We're deeply uncomfortable with pain," she says. "It disrupts productivity. It disrupts expectations. So people - especially women - are expected to pretend it doesn't exist. Household labor still needs doing. Children still need care. Life continues, even when pain is overwhelming."

Empathy, when it appears, is transformative.

"Someone saying, ‘Can I go to the store for you? Can I make dinner?' - that matters," she says. Language matters too. "Being able to talk openly about periods goes a long way. We're still not okay with it - even among women."

In intimate life, these dynamics shape choices and relationships.

"There's a lot of conversation about dating men who see you as a whole person, not as a baby incubator," Rovito explains. Post-hysterectomy, some partners leave. "No uterus, goodbye."

The Cost of a Narrow Lens

Endometriosis often begins early, sometimes as young as nine or ten. Yet medicine frames the disease through fertility, a lens irrelevant to prepubescent girls, teenagers, trans men, nonbinary people, or postmenopausal women. Entire populations disappear because they do not fit this narrow association.

"You can't tell a fifteen-year-old to get pregnant," Rovito says dryly. "So what does that framework offer them?"

Her own experience illustrates the gap.

"I had no clue what endometriosis was until I was twenty-five, when my aunt needed surgery," she recalls. "Good sex education in school would have gone a long way." Her schooling - Catholic, gender-segregated, conventional - offered little. "Boys weren't taught about periods, which ingrains the idea that it's foreign. Looking back, my sex ed was bizarre. We were separated by gender, shown a video about the menstrual cycle: cramps, acne, mood swings. But it was framed differently from how we later experienced it. There was no discussion of pregnancy, STDs, or birth control."

This lack of understanding follows patients into clinics unequipped to recognize their pain. The invisibility of early symptoms, combined with limited education and a narrow medical focus, leaves young people - particularly those outside traditional notions of femininity - at the margins of care.

History, Trauma, and Contemporary Harm

Rovito's archival research uncovered a dark history: women with endometriosis were once subjected to lobotomies, and psychiatry has long shaped how their pain is treated.

"What surprised me most," she says, "was just how involved psychiatry was."

That influence persists. About seventy percent of patients are diagnosed with anxiety or depression. In emergency rooms, men are more likely to receive pain relief; women, antidepressants. Female physicians, she notes, can be just as unknowing as their male colleagues, reflecting deeply embedded cultural and structural biases.

She is careful to distinguish nuance.

"I worked with a psychiatrist - medication has changed my life. But psychiatry has also been used to silence many women whose pain was inconvenient. The harm is real, and systemic."

Rovito reflects on her own research process:

"I can think of a few moments when searching and researching felt very heavy on my heart. When studying different causes of the disease, I became very interested in how epigenetic factors influence endometriosis and how our bodies process pain and trauma. Reading The Body Keeps the Score by Bessel van der Kolk and The Body Is Not an Apology by Sonya Renee Taylor were very influential in the final chapter of my work, where I discuss pain, trauma, and radical acceptance. A huge turning point was linking research on trauma and physical pain to the generations of patients whose stories aren't in the archive but live in the bodies of their descendants. Endometriosis affects many women in my family, and while I was writing in 2023 and early 2024, my grandmother was living with advanced-stage dementia in an assisted living facility. I wasn't able to ask her whether endo - or any chronic illness - might have affected other generations of women in my family. This question is the basis of my next research project: how do you connect with people whose life stories weren't considered worthy enough to save in the archives? While I am curious to learn about and write to the women of my familial history, I also believe this work will reveal how much trauma is truly hidden in the body through epigenetic coding."

From Pathology to Regulation

Endometriosis illuminates broader questions of disability and control. Rovito says;

"These diseases have existed throughout time; our diagnostic language has simply changed. In terms of disability, it's very much a legal justice mindset - but historically, if those women were alive today, they would be legally considered disabled. Yet cultural bias prevents that identity from being claimed."

Cultural assumptions narrow our view of disability.

"When people think of a disabled person, they imagine a cane, service animal, or wheelchair. That's narrow. Other chronic conditions and impairments are overlooked. Autism fits here. It's not visible; you can't see it walking by someone on the street. Disability as an identity category affects tons of people."

Method as Refusal

Rovito's scholarship relies on autotheory: placing lived experience alongside analysis.

"Instead of looking at these issues through an objective lens that academia has set in stone, autotheory says: I have actually lived through this. I can't pretend I have an objective stance. The personal is political."

She emphasizes translating this work across disciplines.

"The message can be shared with medicine, patients, professors, the public, politicians, nonprofits. Different jargon for each audience is actually helpful - it makes me think carefully about the message I want to put out, while keeping it consistent."

Academia, she worries, often speaks only to itself.

"Will people read a dissertation? Probably not. Many academics are in the ivory tower; they see the real world as a separate bubble. I've been trying to do something different. My work has an activist undertaking. I hope it helps people understand how messed up this is, and that they feel they are not being dismissed."

Literature, Evidence, and Belief

Rovito often cites Harriet Martineau's Life in the Sick Room, one of the first accounts of a woman writing about her life and disease. Her physicians dismissed her pain as psychological; an autopsy later revealed a ten-pound ovarian tumor.

"Pain doesn't always show up in labs or scans," Rovito says. "What you see is not the whole story."

Literature, film, and poetry preserve truths about illness that medicine often misses - truths invisible in charts, but no less real.

Rethinking the Encounter

Rovito is blunt about standard pain scales.

"Zero to ten is bonkers. Pain is subjective. My five could be someone else's eight. Someone's two could be another person's four."

Her approach relies on function rather than numbers.

"I ask: How does your pain affect everyday life? How often do you miss school or work? Can you leave the house? Take long trips? How does pain interrupt your routine?"

Pain, in her work, is a form of knowledge. Institutions that ignore it are not neutral - they are complicit. Medicine is failing not just to cure, but to listen. And listening, Rovito reminds us, is the ground floor.

*As a scholar of feminist disability studies and medical humanities, Dr. Rovito acknowledges that the institution where she works is located on the traditional and unceded homelands of the Mohican, Ho-de-no-sau-nee-ga (Haudenosaunee), and Schaghticoke peoples. She recognizes the deep histories, knowledge systems, and ongoing presence of these nations, and she honors their contributions to justice, care, and community in this region and beyond.

George Cassidy Payne

George Cassidy Payne is a freelance journalist, poet, and nonprofit strategist based in Rochester, New York. He writes on politics, culture, and social justice, with a focus on amplifying the voices of historically marginalized communities. His work has appeared in both local and national outlets, exploring intersections of art, human experience, and public policy. George also serves as a 988 Suicide Prevention Counselor and brings his experience in crisis intervention and social work into his reporting and creative writing.

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