31/12/2025
They told her the pain was normal.
They told her to relax.
They told her it was stress, hormones, imagination.
So she stopped asking permission to hurt—and started asking better questions.
Her name was Mary Lou Ballweg. And long before she became one of the most important patient advocates in women’s health, she was just another woman being quietly dismissed.
The pain started in her pelvis. Sharp. Radiating. Relentless. It didn’t follow neat cycles or polite timelines. It invaded daily life. Work. Relationships. Sleep. Doctors examined her, shrugged, and repeated a familiar script millions of women know by heart.
This is normal.
This happens to women.
You’ll learn to live with it.
Mary Lou tried.
But something inside her knew that normal pain doesn’t steal your life.
For years, she was told there was nothing structurally wrong. That the problem was emotional. Psychosomatic. That if she just adjusted her expectations, she’d be fine.
That was the gaslighting.
The kind that doesn’t feel cruel in the moment.
The kind that sounds reasonable.
The kind that makes you doubt your own body.
Eventually, Mary Lou did what desperate patients do when medicine closes its doors.
She researched.
She found obscure papers. She connected with other women whispering the same stories. Pain during s*x. Pain during menstruation. Pain during bowel movements. Pain that spread into nerves, hips, legs.
And she discovered a word most doctors had barely bothered to explain.
Endometriosis.
At the time, endometriosis was poorly understood, chronically underdiagnosed, and often trivialized. It was framed as a reproductive inconvenience instead of a systemic disease. Few physicians connected it to nerve damage. Even fewer listened when patients described pain that didn’t fit textbooks.
Mary Lou realized something chilling.
Women weren’t exaggerating.
They weren’t weak.
They were being ignored.
Endometriosis tissue doesn’t just sit passively. It can infiltrate nerves. Wrap around organs. Trigger chronic inflammation. Create pain that persists long after lesions are removed. Pain that rewires the nervous system itself.
This wasn’t “women’s pain.”
This was neurological damage.
Once Mary Lou saw it, she couldn’t unsee it.
And she couldn’t stay quiet.
In the early 1980s, she co-founded the Endometriosis Association, at a time when patient advocacy—especially by women—was often dismissed as hysteria dressed up as activism.
She built something radical.
A place where women were believed.
She gathered thousands of stories. Medical records. Surgical outcomes. Pain patterns. She noticed what doctors hadn’t bothered to connect. That many women with chronic pelvic pain weren’t failing treatment—the treatment was failing them.
She pushed for recognition that endometriosis could cause chronic neuropathic pain, not just cyclical discomfort. That nerves, once damaged, don’t simply “calm down” because a lesion is removed. That telling women their pain is normal was medically lazy—and psychologically destructive.
Doctors resisted.
Insurance companies resisted harder.
Acknowledging chronic pelvic pain as real meant long-term treatment. Disability accommodations. Research funding. Liability.
But Mary Lou didn’t come from medicine.
She came from suffering.
And she was no longer alone.
Under her leadership, the Endometriosis Association became one of the most influential patient-led organizations in women’s health. It funded research. Educated clinicians. Changed diagnostic criteria. Connected patients globally.
Most importantly, it changed language.
Pain was no longer minimized.
Patients were no longer passive.
Women were no longer expected to endure quietly.
For millions, this was the first time someone said what they had felt all along.
You are not imagining this.
Your pain is real.
And it has a cause.
Today, chronic pelvic pain affects millions worldwide. Many are still dismissed. Many still wait years—sometimes decades—for diagnosis. But because of Mary Lou Ballweg, fewer women accept being told it’s “just part of being female.”
She helped reframe suffering as data.
She transformed private agony into public evidence.
And she exposed one of medicine’s most uncomfortable truths.
When women say they are in pain, the system is more likely to question them than the diagnosis.
Mary Lou Ballweg didn’t discover nerve damage in a lab.
She discovered it in her own body—after the system told her to ignore it.
And then she made sure no one else had to endure that silence alone.
