What's the One Word You Associate With Endometriosis?
Our take
The recent conversation facilitated by Gloria Steinem, in partnership with Looni, regarding endometriosis is a powerful reminder of the pervasive silence and misunderstanding surrounding women’s health. The words shared – isolating, mysterious, helpless – resonate with a painful truth: far too many women navigate this debilitating condition in solitude, often facing skepticism or dismissal from the medical community. The fact that such a conversation, centered around a condition affecting 10% of women globally, took place within the intimate setting of Steinem’s home underscores the need for greater visibility and validation. It’s a shift towards normalizing discussions about women’s health struggles, moving away from the historical tendency to treat them as secondary concerns, and echoing the sentiment expressed by Queen Camilla who recently addressed how her family coped with a "Silent Thief Hiding in Plain Sight" Queen Camilla Addresses How Her Family Coped With a "Silent Thief Hiding in Plain Sight" . The event demonstrates a growing recognition that empowering women to share their experiences is crucial to driving awareness, research, and ultimately, improved care.
The significance of this gathering extends beyond simply acknowledging the challenges of endometriosis. It represents a concerted effort to dismantle the stigma and shame that often prevent women from seeking help. The historical marginalization of women’s health issues—often attributed to being “hysterical” or “emotional”—has created a climate of fear and apprehension. This article highlights the lingering impact of those outdated perceptions, and serves as a catalyst for change. Considering the broader landscape of women's health advocacy, we see parallels in the growing conversations around menopause, fertility, and other conditions that have historically been shrouded in secrecy. These collective movements are forging a path toward a more open and informed dialogue, demanding that healthcare systems prioritize and address women's unique needs. We also see a similar push to address the nuances of chronic illness in women, as highlighted in " What's the One Word You Associate With Endometriosis?".
What makes this particular conversation so impactful is the presence of Gloria Steinem, a figure synonymous with feminist activism and social change. Her involvement lends an undeniable weight and credibility to the discussion. It signals that the fight for women's health is not merely a medical issue, but a deeply rooted social justice imperative. Bringing together advocates and sufferers in an environment of trust and vulnerability allows for a more nuanced understanding of the lived experiences of those affected. This approach contrasts sharply with the often-clinical and impersonal nature of traditional medical settings. Furthermore, the collaboration with Looni, a health platform dedicated to women’s wellbeing, demonstrates a commitment to leveraging technology and digital spaces to amplify these voices and provide access to vital resources. The effort to provide accurate and accessible information about conditions like endometriosis is vital, particularly when considering the challenges many women face in receiving timely and accurate diagnoses. The resonance of Camilla’s story around the impact of a chronic condition really underlines the importance of open dialogue Queen Camilla Addresses How Her Family Coped With a "Silent Thief Hiding in Plain Sight" .
Looking ahead, it’s essential to ensure that this conversation translates into tangible action. Increased funding for endometriosis research is paramount, as is improved education for healthcare professionals to enhance diagnostic accuracy and treatment options. But perhaps even more crucially, we must continue to cultivate spaces—both online and offline—where women feel safe and empowered to share their stories without fear of judgment or dismissal. The quiet strength demonstrated by Steinem and the participants in this gathering offers a compelling blueprint for how we can shift the narrative around women's health, moving from silence and isolation to understanding, support, and ultimately, healing. A critical question remains: how do we ensure this momentum doesn't fade, and that the voices of those living with endometriosis—and other often-overlooked women's health conditions—are consistently amplified and heard?
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.
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