Heather Guidone has worked on endometriosis for about thirty years. On Monday, September 14, she joined the Save the Uterus Club for a free call we'd titled "The Mistakes of the Endometriosis Movement." She pushed back on the title in her first few minutes.
"I think of it more as lessons learned," she said.
Heather, a Board-Certified Patient Advocate, is Program Director at the Center for Endometriosis Care in Atlanta. She made one thing clear before anything else. Patients and advocates built this movement, and none of the lessons she named are failures of patient labor. Here's what she drew from three decades inside it.
Patients should. Heather said the hardest early lesson was that advocates didn't recognize their own power. Doctors, professional societies, institutions, and industry decided the priorities and shaped the story. Patients were cast in whatever role those groups allowed.
She still wants every stakeholder at the table. Research needs participants. Policymakers need constituents. But patients are already the credible messengers, she said. That standing comes from within.
"Allies are supposed to amplify voices," she said. "They're not supposed to replace it."
She sees a younger generation taking that to heart. More patients now walk into an appointment and say they're the expert on their own body. She added that there was a time when patients got better attention if they brought a partner along. That's fading, she said, but not fast enough.
Early on, advocates were desperate for help. Some partners took advantage of that. Heather said they turned patients into marketing stories and "helicopter research," where a team drops in, recruits patients, checks the box on a grant application, and disappears. She said she's guilty of not vetting some early partnerships closely enough herself.
Her test now: ask what a partner brings to the community, not what the community brings to them. Are patients invited for show? Do they help design the study? Do they see the results?
She's a firm believer in paying patients for their research work. "We are not just the recipients of change," she said. "We are the drivers of the change."
Heather said past advocacy mostly served middle-class, urban patients. Racial minorities, rural communities, and gender-diverse people were pushed to the margins. She credited a newer set of advocates for challenging the movement to be more inclusive, and said there's a long way to go.
She also warned against defending any effort just because somebody did something. Awareness for its own sake isn't always good. The question is whether the work makes things better, for everyone.
Social media built community. It also spreads bad information faster than anyone can correct it. Heather asked advocates to slow down before sharing the latest meme, product, device, or drug, and she admitted she's had that knee-jerk reaction too.
Her sharpest line was about visibility. "Don't mistake celebrity for credibility," she said. "It's not awareness if it's wrong."
What gets posted today can reach someone sitting in a doctor's office trying to get diagnosed right now.
An attendee asked what former patients can do beyond sharing a surgeon's name. Heather said sometimes that's enough. The bigger fight is access.
She explained that the procedure code for treating endometriosis pays about the same whether the surgery is a quick look or hours of careful excision off the bowel. That's why many specialists, her own center's included, stay out of insurance networks because they can't afford to be in them. Diagnosis codes have grown a lot more detailed in recent years, and she credited that work. The payment model hasn't changed.
That mismatch hits close to home for me. I was in the insurance model, and it broke me. My wait list ran more than five years. And in residency I watched surgeons walk past obvious disease. One saw a large black lesion near the rectum and told me, "We're just here for the uterus." Heather added the imaging version of the same problem. A clean scan gets used to tell women they don't have endometriosis. She quoted excision surgeon Dr. David Redwine: "Absence of evidence is not evidence of absence."
"For me, excision was wonderful," she said. "I am a beneficiary of excision. Saved my life. Gave me my child." She was quick to add that not everyone has had the experience she did, and she wants to respect that. She also wants better, more affordable medications with fewer side effects than what's offered now. And she wants physical therapy, nutrition, and mental health care treated as part of endometriosis care.
Heather named wins advocacy made happen. Endometriosis was added to Department of Defense research funding because an advocate demanded it. NIH funding went up, though she called it a pittance. And in 2024, Connecticut launched EndoRISE, born from House Bill 6672 passed in 2023, which she described as the first state-funded endometriosis biorepository. She said it shouldn't have taken that long.
She urged support for federal legislation the Congressional Endometriosis Caucus has been working on, the Endometriosis CARE Act (H.R. 6682). Practitioner education is high on her list, even as the disease gets named on TV. In a 2024 survey of New Zealand GPs, only about half felt they knew enough about endometriosis for everyday practice (Ellis et al., Health Expectations, 2024).
She also wants endometriosis treated as a public health crisis. Employers, teachers, and families are all affected. She suspects the one-in-ten estimates run low, because the research mostly counts people of reproductive age.
If you've lived with endometriosis, your experience counts as expertise. Heather called patients "citizen scientists," as important as anyone else on a research panel.
Here's what her lessons ask of each of us:
We're building an educational library at RRM Academy to be clear and scientific for patients and clinicians alike. If a topic is missing, tell us.
Heather closed on why she keeps going when the wins are rare. Somebody is missing school right now. Somebody just quit a job. Her goal is to make sure no one is "still screaming to be heard 40 years after the rest of us were diagnosed."
Heather is back with us twice more this month, both for Save the Uterus Club members.
Monday, September 21: "Better Advocacy." Heather's full talk, with slides.
Monday, September 28: Advocates networking call. A working session for advocates to share projects and find ways to support each other, with Heather on hand for questions.
Join the club at rrmacademy.org/save-the-uterus-club to get both sessions and the recording of this call.
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