# Heather Guidone Has Spent Three Decades Changing What Endometriosis Patients Are Offered

_By Naomi Whittaker, MD · Published: 2026-09-02_

A member of the UK Parliament read a definition of endometriosis into the Westminster Hall record during a February 2022 debate on workplace support. "Endometriosis is a systemic, inflammatory disease characterized by the presence of endometrial-like tissue found outside the uterus." He thanked the woman who had provided him with an abundance of information about the disease and said her name: Heather Guidone, board certified patient advocate and surgical program director at the Center for Endometriosis Care in Atlanta.

She has no medical degree. What she has is her own disease, roughly three decades of work, and a long habit of showing up in the rooms where the decisions get made.

## Who is Heather Guidone?

Heather Guidone, BCPA, is the Surgical Program Director at the Center for Endometriosis Care, where she has worked exclusively alongside world-renowned specialist Dr. Ken Sinervo for more than 20 years. She runs the Center's multidisciplinary care program, along with its disease education, advocacy, legislative, and policy work. She also coordinates the Center's minimally invasive gynecologic surgery and endometriosis fellowship program, which is how specialized surgical skills are passed on to the next generation of surgeons.

Her own description of the span is "bench to beltway to bedside." Roughly thirty years of it.

Drawing from her own lived experience with endometriosis and several chronic overlapping conditions, she brings a deeply informed and compassionate perspective to every aspect of her community-driven advocacy. Her work spans diverse public-private partnerships and advisory committees focused on health economics, women's health, public health education, patient engagement, professional advocacy, clinical research, health policy, and more. Widely recognized for her ability to bridge the perspectives of patients, clinicians, academia, research, policymakers, and industry, she is frequently invited and appointed to serve on advisory committees, editorial boards, task forces, legislative working groups, and other multidisciplinary initiatives dedicated to improving patient-centered outcomes. She collaborates extensively with federal and state agencies, hospital and clinical advisory groups, industry partners, and multidisciplinary coalitions to advance meaningful policy reform, expand translational research funding, strengthen public awareness, and improve health, patient engagement, and developmental initiatives at both national and international levels. Her collaborative efforts have also helped secure state funding to establish and support a novel endometriosis research biorepository designed to advance discoveries.

Over the past thirty-five years, Heather has also authored and contributed to a substantial body of work on endometriosis, women's health, patient advocacy, menstrual health, and related disciplines. Her writings have appeared in landmark publications such as The Palgrave Handbook of Critical Menstruation Studies, Our Bodies, Their Business, and many others, including, most recently, The Journal of Nursing 2026 and The SAGE Encyclopedia of Menstruation & Society. In addition to extensive other media, she is featured in the award-winning documentaries Endo What? and Below the Belt, helping to dispel misconceptions, amplify awareness, and improve public understanding of endometriosis.

## What is a Board-Certified Patient Advocate?

BCPA is a professional credential, not a courtesy title. Board-Certified Patient Advocates meet established eligibility requirements and demonstrate competency across core areas of patient advocacy through a national certification examination. Guidone is not a physician and does not practice medicine. She is, however, a lifelong learner whose decades of work have placed her at the intersection of patient advocacy, education, research, policy, and healthcare.

The work is quieter than surgery, but its impact can be just as significant. Someone has to help shape the definition a legislator reads out loud. Someone has to explain to a research panel what years of being disbelieved can do to a person. Someone has to answer the patient who has been handed a prescription and a shrug and does not know what to ask next.

## What is the Center for Endometriosis Care?

The CEC was founded in 1991 by Robert B. Albee, Jr., MD, FACOG. Joined a few years later by Medical Director, Ken Sinervo, MD, MSc, FRCSC, ACGE, the Center builds everything around one operation: Laparoscopic Excision, which it describes as removing endometriosis from all affected areas while preserving healthy tissue and organs, with pathology run on everything taken out.

That last part matters more than it sounds. Excision cuts the disease out. Ablation burns the surface and leaves what sits underneath. Two operations, two results, and individuals are rarely told which one they are getting. If you are new to any of this, start with [what endometriosis actually is](https://rrmacademy.org/endometriosis/).

Surgeons from the Center show up in the RRM Academy research library. A 2011 study in Fertility and Sterility [asked whether teenagers need hormonal suppression after complete excision](https://rrmacademy.org/library/complete-laparoscopic-excision-of-endometriosis-in-teenagers-is-postoperative-ho-recxfcsmpuo5jwlej/), and a 2013 multicenter pilot [followed patients after excision surgery](https://rrmacademy.org/library/a-pilot-feasibility-multicenter-study-of-patients-after-excision-of-endometriosi-rec0gin2tgsgwngt9/). Albee and Sinervo are authors on both.

## What is Heather Guidone's own endometriosis story?

She was diagnosed with stage IV endometriosis in her late teens in the 1980s, after years of symptoms. Early on she was told to have a hysterectomy right away. Multiple failed surgeries and medical treatments with heavy side effects came first, and she eventually traveled a long way to see a specialist who knew the disease, after more than 20 surgeries and countless rounds of suppression.

She has lived with endometriosis and the complex realities that accompany the disease for nearly forty years, struggling with adenomyosis, fibroids, infertility, and other chronic overlapping conditions along the way. Ultimately undergoing a hysterectomy and oophorectomy later in life, she continues to live with the lasting consequences of a long and difficult disease journey, some of which might have been avoided had she been able to access appropriate, specialized care earlier.

Still, the teenager who was told to give up her uterus before she was ready to make that choice went on to run the Program at a Center devoted to taking the disease out and leaving the organs in. She built that road herself, one room at a time.

## How does patient advocacy shape endometriosis research?

Guidone has spent decades working to ensure that the perspectives and priorities of people with endometriosis are represented wherever research, evidence, policy, and healthcare decisions are being made. Her work includes serving as a Consumer Reviewer for the U.S. Department of Defense Congressionally Directed Medical Research Programs, the HHS Office on Women's Health and many others, as well as participation in initiatives and panels with organizations including the American College of Obstetricians & Gynecologists and the NIH. Her involvement extends across the broader research and evidence landscape as well. For Guidone, engagement is not simply about having the patient in the room. It means treating the lived experience of credible messengers as expertise and ensuring patients have a meaningful role in co-designing research, determining which questions are asked, which outcomes matter, how evidence is interpreted, and how findings ultimately translate into care. She also serves as a PCORI Ambassador and Merit Reviewer and as a member of the ICER Midwest Comparative Effectiveness Public Advisory Council, has contributed to the Society for Women's Health Research Endometriosis Working Group, serves on the Endometriosis Legislative Working Group that founded the novel EndoRISE biorepository, brings the citizen scientist perspective to the literature as a peer reviewer for BMJ and the Journal of Patient Experience, is a member of the FDA-CTTI Patient Engagement Committee, serves as a member of the Chronic Disease Coalition, and much more. Her advocacy also extends to various policy efforts that have taken her to the nation's capital and statehouses across the country, where she has worked to advance greater disease awareness, education, research, and meaningful change.

Much of her work happens behind the scenes, connecting patients, advocates, clinicians, researchers, policymakers, and organizations to help move endometriosis research and care forward.

## Why is Heather Guidone speaking to the Save the Uterus Club?

I picked Heather deliberately. I went looking for the leading advocate in endometriosis, and every road led to her. She has lived the disease for decades. She works inside a Center whose surgery and patient education set a standard the field measures itself against. And she understands the policy gap, the machinery that decides what care patients are actually offered, in a way I have found in no one else. Most advocates are strong in one of those arenas. Heather works all three at once, and has for decades.

The CEC is an excision-focused center. RRM Academy holds the same conviction about endometriosis: it is a surgical disease, and excision is the operation that treats it. That shared ground is enough for a conversation, and she is joining ours as a guest of the community.

Her subject is the movement she has spent thirty years inside and helping to shape, including the parts of it she thinks went wrong. She speaks for her own work, not for Restorative Reproductive Medicine.

Heather is also the first in a series we are starting: profiles of the people closing the gaps in women's health, the ones who built what patients rely on now and rarely got named for it. She sets the bar for everyone who follows.

The Save the Uterus Club is RRM Academy's community, led by Dr. Naomi Whittaker. Three sessions in September, all at 5 PM Eastern:

**Monday, September 14: "The Mistakes of the Endometriosis Movement."** A free public call, brief and informal, open forum. Thirty years of advocacy produced real wins and some real errors, and she is willing to name both out loud.

**Monday, September 21: "Better Advocacy."** The full talk with slides. Members only.

**Monday, September 28: Advocates networking and collaboration call.** Lorraine Truman, the longtime advocate who runs our monthly advocacy calls, leads this one. Dr. Whittaker hosts, and Heather stays on for questions. Members only.

## How do I register for the September sessions?

The September 14 call is free and open to anyone. [Register here](https://rrmacademy.org/events/the-mistakes-of-the-endometriosis-movement-with-heather-guidone/).

The September 21 talk and the September 28 networking call are for Save the Uterus Club members. [Join the club](https://rrmacademy.org/save-the-uterus-club/) to get access to both, plus the rest of the members' library.

Come to the free call first if you are deciding. Bring the question you have been carrying around. She has been working on versions of it for thirty years.

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Source: https://rrmacademy.org/commentary/heather-guidone-endometriosis-advocacy/