Endometriosis Advocacy, Part 2: From Awareness to Implementation

Heather Guidone, BCPA, Surgical Program Director at the Center for Endometriosis Care, gives her full slide talk in this ten-lesson course. It was recorded live for the Save the Uterus Club. Where Part 1 looked back, this talk looks ahead. Heather's own work has moved from helping patients get through an inadequate system to changing it. She treats lived experience as a form of expertise, and opens by defining endometriosis as a chronic, systemic inflammatory disease.

The heart of the talk is the move from awareness to implementation. In her framing, advocates go from "make them see us" to "make the system respond." Awareness has grown, and patients still wait years for a diagnosis. She sets out what advocacy is and isn't, at every level from professional advocates to self-advocacy. Her working method: define the change, identify the barrier, reach the decision maker with authority, and measure the result. She matches each barrier to the right tool, from surgical training to reimbursement reform. And she asks advocates to stay after the announcement. Was the bill funded, adopted, and enforced? Did outcomes change?

Heather then shows advocacy in action, including Connecticut's state-funded endometriosis biorepository and work in Congress for the Endometriosis CARE Act. In the Q&A, Dr. Naomi Whittaker reflects on informed consent and what medical training leaves out. Heather explains how the Connecticut law began and why it has to be funded again every year. The course closes on burnout, and on fighting for your own care as hard as you'd fight for anyone else's.