Endometriosis isn’t just a “period problem.”
Endometriosis is often misunderstood as being solely a gynecologic condition, but it is a systemic inflammatory disease that can affect the entire body. The disease has been linked to bowel and bladder dysfunction, chronic fatigue, brain fog, nerve pain, joint pain, and, in severe cases, organ involvement, including the diaphragm and, in rare cases, the lungs. It can contribute to infertility and is frequently mistaken for IBS, autoimmune disorders, or anxiety before the underlying disease is recognized.
When a disease affects multiple organ systems but is treated as a “period problem,” patients fall through the cracks.
This is an opinion piece. I am not a clinician, researcher, or policymaker. I am an average woman forced to become an expert in her own survival. I have learned the language, the studies, and the gaps not by choice, but by necessity.
Women are not asking for miracles. We are asking to be believed and helped.
I am one voice. There are millions more.
And we deserve better.
Endometriosis affects one in ten women and those born with a uterus, yet the average time to diagnosis in the United States is seven to ten years. During that time, patients are frequently dismissed, minimized, or told their pain is normal. This disease carries high economic costs through lost productivity, delayed care, and long-term medical needs, yet it remains widely misunderstood and underfunded.
As Endometriosis Awareness Month begins, I am sharing this as an open letter to the White House. This is not just a personal story; it is evidence of a systemic failure. What follows is not an isolated experience. It is a 15-year account of medical dismissal, delayed diagnosis, and policy gaps that continue to harm women every day.
If this happened to men, treatment for this disease would have been funded by now.
Prisoner in my body
It started when I was 14.
My periods were painful in a way that felt wrong, like barbed wire scraping against my insides. The pain was not inconvenient, not uncomfortable, but alarming. Pain that shut my body down. Pain that pulled me out of classrooms, out of daily life, and out of trust in my own body.
But instead of being investigated, my pain was redirected.
At first, I was too young.
“Your cycle will regulate.”
“This is normal.”
“This is just part of being a woman.”
By 21, my body no longer felt like my own. I gained weight rapidly. My face swelled. My hair fell out in handfuls. My period disappeared entirely for a year.
“Oh, it’s hypothyroidism,” they said.
“Take this medication. It will fix everything.”
“Your period will come back. Your life will improve.”
Spoiler alert: it didn’t.
When nothing changed, the explanation shifted away from my physical symptoms.
“Are you depressed?”
“Are you anxious?”
“Are you sure this isn’t mental-health related?”
I remember thinking: Anyone would feel depressed living in this kind of pain.
No one asked why a teenager was suffering this much, or why, later on, a young adult was suffering this much. No one paused. No one dug deeper. My pain was something to manage, to medicate, to quiet; not something to understand.
As I got older, the symptoms escalated
My cycles became chaotic. I bled for weeks at a time. Periods vanished for months, sometimes a year, only to return with vengeance. The pain was no longer just cramping. It radiated down my legs, threaded through my nerves, and hollowed me out before my period even arrived.
Each month, before the bleeding begins, my body collapses into what many women with endometriosis call the “period-flu.” Full-body inflammation. Crushing fatigue. Nausea. Brain fog so thick I lose words mid-sentence. Pain so consuming that each month I miss work, cancel commitments, and struggle to function. An experience shared by millions of women living with this disease.
Still, women are expected to call this normal. To show up, perform, and carry on as if nothing is happening.
For nearly a decade, I was told:
“Just take birth control.”
“Pain is part of being a woman.”
“There’s nothing wrong with you.”
I was prescribed medications that caused prolonged bleeding and severe mental-health side effects. When I reported them, it was recommended to try another one. And another. Until something “worked.”
I believed I was crazy.
Age 28: The first time I was believed
It wasn’t until I was 28 years old that someone finally listened.
I went to my primary care physician. Not a specialist, not another OB-GYN, and for the first time, was asked a different question:
“Have you ever heard of endometriosis?”
Based on the symptoms I shared, he told me he believed I had it and urged me to find a specialist. That moment, simple as it sounds, changed everything. For the first time, a doctor trusted my experience enough to consider a credible explanation rather than dismiss it. To explore options.
My OB-GYN had never brought up endometriosis. She gave me every pamphlet imaginable on medications to try but never explained why I was feeling what I was feeling. Another prescription instead of curiosity.
Months later, and I found a surgeon who performed laparoscopic surgery and confirmed that I did, in fact, have endometriosis. I was 28 years old when I finally had an answer for pain that had shaped my life since I was 14.
But even then, the story didn’t end; it fractured.
The surgeon told me I would likely struggle to have children. He told me I also had PCOS. He recommended birth control.
Again.
That was it.
No long-term plan. No education. No discussion of recurrence, surgical expertise, or disease management.
Just hormones and resignation.
The system defaults to symptom management instead of investigation. Six months later, the pain came back with a vengeance. I remember lying on the bathroom floor, the cold tiles pressed against my face, unable to stand, waiting for the pain to pass.
I sought a second opinion. This time, another endometriosis specialist reviewed my surgical records and imaging. What he found during my second surgery stunned me: significant endometriosis had been missed during the first procedure. Especially in my bowels, a stricture formed. Appendix removed. My first surgery lasted 45 minutes. This one took over three hours.
Disease left behind. Disease continuing to cause pain.
I realized how much women are expected to guess their way through care without being taught what to look for, what questions to ask, or what standards should exist.
Women should not have to learn surgical quality through pain.
Sexism in the exam room
Surgery, I learned, was only one part of the equation. There was no aftercare protocol. No roadmap for what came next.
After a severe flare, my husband found me collapsed on our bedroom floor. I made a calculated decision at a follow-up appointment: I brought my husband with me.
Not because I had to. Not because I couldn’t speak for myself. But because I knew I needed him.
Months earlier, when symptoms returned, I had brought my mother. My pain was brushed aside. I was told to “try a few things” and get a few scans, his tone more placating than curious. Then, despite knowing I was not ready for a family, the conversation shifted again.
“It’s time to have a baby.”
“Try for a baby.”
“Pregnancy might help your endometriosis,” he laughed.
An old myth, delivered as medical advice.
My pain was reduced to a reproductive problem. My body reframed as something to use rather than heal. My autonomy was quietly dismissed. Relief was not the priority; motherhood was.
When my husband described what he had witnessed: me unable to stand, collapsed on the floor during a flare, the doctor’s expression changed. He listened. He asked him follow-up questions. My words alone were not enough.
My symptoms hadn’t changed. Nothing about my condition had changed. Only the gender of the person describing it. In that moment, my pain became real because a man validated it.
The sexism embedded in these appointments is subtle, normalized, and devastating. Women are treated as dramatic, emotional, or unreliable narrators of their own bodies, until a male voice confirms the severity.
Even my husband couldn’t believe what we both witnessed.
The fight for answers continues
Despite confirmed endometriosis, including disease on my bowels, I was repeatedly told my painful and chronic constipation was IBS. I was prescribed Linzess, told to try Miralax, and advised to manage stress. When those treatments failed, they suggested increasing the dosage, and when that failed, the burden of diagnosis fell on me, the patient.
Anything but investigate further.
It wasn’t until I pushed relentlessly at 33 years old and found a GI doctor familiar with endometriosis that an MR defecography was ordered, finally revealing a real, physical explanation for what was happening in my body as a result of my endometriosis.
The answer existed, I just had to beg for it.
No other GI doctor had ever told me this test existed or that it could explain my symptoms. Instead, I was handed, yes, more pamphlets and more prescriptions. More Band-Aids. More symptom management. Still no investigation.
Insurance and investment: where the system breaks
Even when endometriosis is acknowledged, another barrier appears: insurance.
Endometriosis is a complex, full-body disease that often requires excision surgery performed by highly trained specialists. Yet many of these specialists are considered out-of-network. Insurance routinely refuses to cover their care, forcing patients to choose between crushing medical debt and inadequate treatment.
Instead, patients are pushed toward:
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Ablation surgeries that burn surface tissue but leave the disease behind.
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Birth control and pain medication as default “solutions.”
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Surgeons without proper experience in endometriosis excision.
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Repeat procedures that create scar tissue, nerve damage, and more pain.
The care that works is often inaccessible. The care that causes harm is covered. This pattern extends beyond insurance and into research and investment priorities.
Despite how common and disabling endometriosis is, women’s health remains dramatically underfunded compared with conditions that predominantly affect men. In 2023, only 2% of the $41.2B in venture funding for health innovations was allocated to women’s health. According to analyses from Portfolia and the McKinsey Health Institute, from 2019 to 2023, startups focused on erectile dysfunction raised approximately $1.24 billion, while startups addressing endometriosis raised about $44 million, a stark disparity in what the market funds and what it ignores.
This gap reflects more than market dynamics. It reflects whose conditions are treated as urgent and whose suffering the system expects to be managed, minimized, or endured. This disparity is not accidental.
This is not a series of individual failures. This is a systemic one.
Federal actions that would change this reality
The suffering associated with endometriosis is not inevitable. It reflects policy choices, and policy can change it.
There are signs of growing recognition. In December 2025, Representative Alma Adams and colleagues reintroduced the Endometriosis CARE Act, a proposal that would invest $50 million annually in NIH research and would address disparities in diagnosis, awareness, and access to care.
The legislation represents important progress. But it remains in the early stages of the legislative process. For millions already living with disabling symptoms, recognition alone is not enough.
The question is no longer whether endometriosis deserves federal attention. The question is how much longer patients will wait for meaningful action.
Meaningful reform must include:
1. Federal research funding proportionate to impact
Direct the NIH to increase dedicated funding for endometriosis research so that investments reflect the disease's prevalence, disability burden, and economic impact.
The proposed $50 million annual investment in the Endometriosis CARE Act is a critical first step. But closing the women’s health gap will require sustained federal commitment. For decades, conditions that primarily affect women have received less research attention and investment than conditions affecting men.
Incremental increases alone will not close a disparity built over generations. Without sustained funding at scale, meaningful advances in diagnosis, treatment, and prevention will remain out of reach.
2. Workplace protection and medical leave
Recognize endometriosis as a chronic condition eligible for federal workplace protections and medical leave accommodations, so patients are not penalized for severe flares.
3. Mandatory clinical education on endometriosis and gender bias
Support national training initiatives for medical students, residents, and practicing clinicians on endometriosis, chronic pelvic pain, and the impact of gender bias on delayed diagnosis.
4. National standards for endometriosis surgery
Establish federal competency standards and outcome transparency for endometriosis surgery, recognizing that excision is not interchangeable with ablation and that inadequate procedures contribute to ongoing disability.
5. Insurance access to qualified specialists
Expand federal guidance to ensure coverage for evidence-based excision surgery and advanced diagnostics, including out-of-network care when appropriate expertise is not available in-network.
6. Integrated, multidisciplinary care models
Support care structures that recognize endometriosis as a systemic disease requiring coordination across gynecology, gastroenterology, pain management, and mental health.
7. Accountability for diagnostic delay
Track diagnostic timelines and incorporate endometriosis into federal quality metrics. A condition that takes an average of 7–10 years to diagnose reflects a system failure, not a patient problem.
Endometriosis is not rare
This is not about special treatment. It is about equitable care for a condition that affects one in ten women and those born with a uterus.
This began at 14. I am now 33. I am still searching for relief.
How many more years and how many more women will it take before this is treated with urgency?
Endometriosis is not rare.
The suffering is not invisible.
The solutions are not unknown.
What has been missing is the will to act.
Women do not need sympathy. We need policy action.
Finally, while this essay reflects my experience as a cisgender white woman, endometriosis and pelvic pain affect women of color, transgender, and nonbinary people, who often face compounded disparities in diagnosis, access to care, and clinical bias.
If this story resonates with you, please help make it visible, share it, comment and add your voice, send it to advocacy groups, healthcare leaders, and policymakers.
Women’s healthcare does not change quietly.
