Endometriosis Advocacy From Awareness to Implementation

Endometriosis advocates spent decades making the world see this disease. Heather Guidone's talk for the Save the Uterus Club argues that the next job is harder: making the system respond.

Heather, a Board-Certified Patient Advocate, is Program Director at the Center for Endometriosis Care in Atlanta. On Monday, September 21, she gave our members her full talk, "Awareness Was the 'Easy' Part. Now What?" It followed her September 14 call on lessons from the movement. She shared her slides with me afterward.

How has the endometriosis advocate's job changed?

The old job was getting endometriosis seen. The new job is getting the system to respond. That system includes the people who set research priorities, write guidelines, pay for care, and make policy.

Getting seen took decades. Patients broke the silence by telling their stories. They built communities. The disease became visible, and research and policy attention followed. Advocates educated, testified, and organized the whole way.

Why is endometriosis diagnosis still delayed?

Awareness alone doesn't change how care systems work, and the delay numbers in her deck show it. Endometriosis has had an awareness month and a ribbon. It has a social media presence, conferences, and the attention of researchers and policymakers. One slide checks off every item, then points out that patients are still waiting.

A multicenter Dutch study still found a median diagnostic delay of 7 years (de Kok et al., 2026). A 2025 French study of patients with moderate or severe endometriosis found a median diagnostic delay of 5.0 years. The researchers compared patients before and after France's 2022 national public health plan for endometriosis. They found no statistically significant difference in delay (Gastineau et al., 2025).

I call this kind of wait a gaslighting delay. Women get told their pain is normal, sometimes for years.

Her slides describe the gap this way. The field knows a great deal about endometriosis. Patients still run into dismissal, delay, and uneven care. She calls implementation the bridge between the two.

What are the four stages from awareness to impact?

Her framework has four stages: awareness, advocacy, implementation, and impact. Awareness means people know the problem is real. Advocacy is caring enough to act on it. Implementation starts when systems change how they work. Impact is the part patients feel: better outcomes. Each stage is harder to reach than the one before.

Implementation is where research turns into access. A guideline becomes a clear path to care, and an awareness campaign becomes resources.

Impact also has to reach everyone. Cost, insurance, referrals, and where a woman lives all shape who gets the benefit. Change that only reaches people with money, access, and a platform reaches the people who need it least.

What does good patient advocacy look like?

In Heather's framework, good advocacy equips patients to decide for themselves, with information, support, and power. She defines it through a series of contrasts.

An advocate helps patients understand every option, then protects their right to choose. Advocates can pursue a fair process and fair access. They stop short of promising any particular outcome.

Raising awareness is a first step. The fuller job is helping people ask hard questions, make decisions, and act on them.

Patient expertise is skilled work. It deserves recognition, support, and pay where it applies, rather than being treated as free emotional labor.

No one should have to prove their suffering to be believed. Patients are the authorities on their own experience.

Good advocacy also lightens the load. It creates change without adding burdens for people already living with the disease. And patients don't all have to become advocates.

For a single patient, advocates help turn lived experience into language clinicians can use. They spot dismissal and delay early, keep a record of patterns, and help arrange referrals to experienced clinicians.

How should endometriosis advocates measure success?

Heather's answer is on one of her slides: "The measure of advocacy isn't how many people saw it. It's what changed because they did."

Likes, impressions, and followers count who saw something. She asks harder questions. Did people get diagnosed sooner? Could they reach the right care? Did their lives get better?

The same test applies after a win. A bill passes, or a guideline comes out. Her rule is to stay after the announcement. Check the follow-through: the funding, the training, and whether patients can actually get the care. She treats the announcement as a milestone on the way to an outcome.

Clinicians know this pattern. A guideline can come out while everyday care stays the same.

Her planning method starts from the outcome. Name the specific change. Find what's blocking it and who can say yes. Decide what success looks like, then check if it came true. Awareness becomes one tool for reaching that goal.

Partnerships face that test as well. Each one should produce something concrete, such as a guideline, a referral pathway, or a change in coverage. Then it should measure that change and share the results with the people it serves.

What does "power with" mean in patient advocacy?

Power with means patients help make the decisions. She frames it as a choice between two kinds of power: "Not 'power over.' Power with."

That looks like shared governance, a say in what gets studied, and pay for patients' expertise. It also means being open about how choices get made, and answering to the community. If patients can't change a decision, she calls it participation.

Patients get invited, heard, and given seats. Too often, their input still doesn't change the direction of the work. One slide sums it up: "A seat at the table isn't power if someone else has already written the menu."

She wants patients involved in research from the first question to the final review. Studies that recruit patients but leave them out of designing, running, and sharing the work have a name: helicopter research.

She also wants advocates working upstream, where decisions get made. Advocates can help set research goals, draft policy, shape guidelines, and hold leadership roles.

Heather developed her own model, CAPER™, with the PATIENTS Professors Academy at the University of Maryland School of Pharmacy. It's a partnership model built to keep patients involved in every stage of endometriosis research.

What is Connecticut's EndoRISE program?

EndoRISE is Connecticut's endometriosis research program, paid for by the state. It collects endometriosis data and runs a biorepository, a bank of biological samples stored for research. It shows what implementation can look like.

In June 2023, Connecticut lawmakers passed House Bill 6672. The law directed UConn Health and The Jackson Laboratory to build the program. The research focuses on catching endometriosis earlier in teens and adults, and on better treatment. The effort began in a working group led by Representative Jillian Gilchrest.

Her slide calls EndoRISE the first public, state-funded program of its kind in the U.S. Several institutions take part, and it runs education for the public and for clinicians. Patients, advocates, lawmakers, researchers, and clinicians all work on it. Awareness became a law with funding, named institutions, and set research goals.

What comes next for endometriosis advocacy?

Implementation, accountability, partnership, and power. Her closing slides name those four as the next era.

She asks advocates to know the evidence, disclose conflicts, and report back on what happened. She also asks them to share the work instead of carrying it alone.

Her standard applies to RRM Academy, too. We're an education nonprofit, and education is awareness work. It still matters, and her slides say so. Education gives a woman the confidence to push back when she's dismissed. By Heather's measure, it counts when that confidence leads to an earlier diagnosis and better care.

Her deck credits advocates with making the disease impossible to ignore. Near the end, she sets the next task: "Now we must make meaningful change impossible to avoid."

Awareness was the easier half of the work. The harder half is making the system respond.

Join us on Monday, September 28, for the Save the Uterus Club advocates networking call. Lorraine Truman leads it, and Heather joins us for Q&A. Not a member yet? Join the Save the Uterus Club.