What's the One Word You Associate With Endometriosis?

Isolating. Mysterious. Helpless. All words that came up during an intimate conversation about endometriosis at the home of feminist icon Gloria Steinem. Endometriosis affects 10 percent of women worldwide, but many suffer in silence, ignored by doctors and isolated by their sometimes debilitating pain. (Debilitating—another word that kept coming up.)

But isolation wasn’t an issue at the July meetup at Steinem’s home. Hoping to amplify understanding of endometriosis and the ways it affects sufferers, Chelsea Leyland and Tatiana Steel—who in 2020 co-founded Looni, a reproductive and hormonal health platform and brand—partnered with Steinem for one of her legendary "talking circles."

“We thought we had invented [them],” Steinem told the group about her now-famous series of discussions, which date back to the '60s. “Quite a few years later, we were here in this very room and Wilma Mankiller, the great chief of the Cherokee Nation, came and sat and listened to us for a while and said, ‘Well, when we do this we have a talking stick that we pass around.’ So...we invented the world’s oldest human institution,’” the 92-year-old said, eliciting laughter from the group.

“Anyway, I love that it’s a circle," Steinem added. "I love that it doesn’t have a president or a vice president. We’re all part of it. We can all participate and agree and disagree and learn and discover what we thought we knew was wrong.”

Inside Steinem's living room, her guests—which included doctors, advocates, and sufferers—introduced themselves, sharing their stories and the single word they associate with the disease. Some attendees were quickly brought to tears. Others couldn't share their stories fast enough. The release of being among those who truly understood—it was overwhelming.

On average, it takes seven to 10 years to be diagnosed with endometriosis. Several guests at Steinem's home had been told by doctors that their crushing pain was a "normal" part of being a woman—a notoriously common experience for endometriosis sufferers. For other women, their infertility—a known complication of endometriosis—wasn't properly addressed or treated for years. Gaslit—another word that came up again and again.

Leyland, the Looni co-founder who co-hosted the event, suffered multiple miscarriages during her ten-year struggle to be diagnosed with the disease. A circle like the one at Steinem's home, she said, would have been a lifeline.

"All I wanted to do was connect with other women who were experiencing loss and the burning desire to become a mother and being faced every day with the idea that that might not be a reality,” she told the group. “There is so much power in identification. Just someone saying, ‘I see you. I hear you. I’m going through the same thing.’”

Her word? Excruciating.

Other guests opened up about losing pregnancies—another topic often considered taboo, though women yearn to connect over it. Actor Marianne Rendón shared that after experiencing multiple pregnancy losses, she finally has a 10-week-old daughter—and yet, her journey with the disease is ongoing. Her word: distrust.

“It’s so sad to me that I distrust medicine when I want to find providers for [my daughter] and she’s so little," Rendón said. "I feel really grateful that you’re all here and fighting for this.”

On that point, everybody agreed: The fight takes everyone—an active community of advocates, medical professionals, and patients. And change begins with conversation.

To that end, dentist Dr. Eve Lofthus shared her research journey about the potential connection between the oral microbiome and endometriosis. Dr. Tamer Seckin, a renowned endometriosis surgeon, spoke about the role of genetics. Acupuncturist Mary Sabo spoke about integrative medicine. Dr. Piraye Beim of Celmatix Therapeutics and Dr. Semir Beyaz of Cold Spring Harbor Laboratory talked the group through their research into medicines that could potentially be cures.

“I think we can make it because we are here all together,” Dr. Beyaz said. “The surgeon is here. The advocate is here. The scientist is here.”

The word he most associates with endometriosis: resilience.

Just like the disease itself—which can manifest in a variety of different ways, from IBS-like symptoms and infertility to crippling pelvic pain and organ invasion—the guests’ words were varied and expansive. Hopeful, said Kara O’Malley, co-founder of Our Daughters Foundation. Mobilize, said Liz Powell, the founder of Women’s Health Advocates. Perseverance, said Dr. Kolbe Hancock, co-founder of Spring Fertility.

"I have so much resentment for [endometriosis]—for how much it has taken,” said Nicole Notor, the founder of Endo Excision for All. “At the same time, it’s brought so many incredible human beings into my life that I never would have met otherwise.”

Her word? Community.