Empowering women through a grassroots approach is what Camran Nezhat, MD, a gynecologic surgeon in Palo Alto, Calif., had in mind when he founded the Worldwide Endometriosis March, or EndoMarch, some years ago. In March 2018, the 5th annual international day of marches and calls to action took place across at least eight U.S. cities and dozens of locations across Europe, Africa, the Middle East, and Asia.
Dr. Nezhat founded the 501(c)(3) public charity nonprofit along with his brothers, Farr Nezhat, MD, and Ceana Nezhat, MD; his niece Azadeh Nezhat, MD; and Barbara Page, a graduate of the University of California, Berkeley, who was working in his practice at the time.
“We’d published so much on the disease [in the medical literature], we didn’t know what else to do ... to help these women. We practice in one of the most advanced cultures for medical care ... and yet women come to us who’ve been told it’s all in their heads, or that they have PID [pelvic inflammatory disease] or depression,” Dr. Camran Nezhat said. “We’d get together and talk about this ... and we thought about how not much changed [with civil rights] in this country until people marched and took matters into their own hands.”
A final catalyst was a lengthy account and reflection on the history of endometriosis that the Nezhat brothers wrote, titled “Endometriosis: Ancient disease, ancient treatments” (Fertil Steril. 2012;98[6 Suppl]:S1-62). They dedicated their research to their mother, who suffered from endometriosis during her life in Iran and who inspired them to pursue medicine and become gynecologic surgeons.
Each year’s EndoMarch events are organized by EndoMarch chapters that are run by volunteers, many of whom have used the annual events to network and fuel year-round advocacy. Chapters have played important roles, for instance, in a national, government-sponsored awareness campaign launched in 2016 in France to alert the public through ads at bus stops and on TV and other media that pain during menstruation is “not natural” and may be a sign of endometriosis.
In Australia, EndoMarch advocates also helped drive plans in December 2017 to create a federally funded “national action plan” for endometriosis. In announcing the plan, Australian health minister Greg Hunt apologized, saying that the disease should have been acknowledged and acted upon “long ago.”