We were honored to recently host a powerful webinar focused on navigating underserved women’s health conditions like endometriosis featuring advocates, clinicians, policymakers, and creators working across personal and professional lines to enact change.
How to Watch the Recording
If you couldn't make it live, you can still watch the free recording on-demand by clicking the following link: Take Me to the Webinar
What were the highlights?
1. Validation Starts with Listening—Not Dismissing
What we heard:
Emma Maxwell described being told her pain was “normal,” “in her head,” or simply something she had to endure as a woman. Despite repeated medical visits, her pain was minimized until she found a doctor willing to take her seriously. Mik Zazon shared her experience with not being believed, and having to bring an advocate with her to appointments:
“I've been to male urologists where I explain I'm peeing blood, and they’ve said “Are you sure it's not just your period?” And I have to say, “I'm pretty sure I know the difference between my period and peeing blood.” One of the things that really helps me advocate for myself is reminding myself that my pain and experiences are real before going to an appointment and leaning on others. I'm really lucky to have an older sister who is a nurse practitioner, and she went to almost every single one of my appointments, because it got to a point where doctors wouldn't even look me in the eye when I walked in, because they just wrote me off as someone with chronic pain.”
Why it matters:
Dismissal and diagnostic delay aren't rare—they're the norm in endometriosis care, with an average diagnosis timeline of 7–10 years.
What you can do:
If you're a provider, lead with curiosity rather than assumptions. Ask, “How is this pain affecting your life?” not just “Where does it hurt?” Ask "Is there anything else you want me to know?" instead of assuming you have all of the relevant information after a patient shares their brief story. If you're a patient, remember: persistent pain is not normal, and seeking a second (or third) opinion is a form of self-advocacy, not defiance. Dr. Jessica Opoku-Anane offered her perspective:
"The biggest message I want to put out there is that you shouldn't feel like you need to argue with your physician to get the care that you need. As a clinician who sees a lot of endometriosis, I often have patients who come see me for the first time and give me the argument for why they have endometriosis. And I'm thinking, "Yeah, I knew that. Thirty seconds into the conversation, I believed you that you had endometriosis." But oftentimes I sit there and listen because I know they need to get the story out. I know that they're so frustrated. They're so used to having to convince doctors, but they don't have to convince me. So, my first recommendation is if you feel like you're not being heard, find another provider."
2. Your First Diagnosis Might Not Be the Full Picture
What we heard:
Several speakers, including Emma Maxwell and Dr. Jessica Opoku-Anane, emphasized that even after surgery, symptoms can persist. Emma Maxwell shared how she had to push for care beyond an initial diagnosis, including seeking out a specialist when prior interventions failed.
Why it matters:
Endometriosis can be complex and systemic—what’s visible in one exam or surgery may only be part of the problem.
What you can do:
Ask potential providers about their treatment philosophy and experience with advanced cases. Look for care teams who understand endometriosis as a whole-body condition. Consider multidisciplinary, integrative clinics that include pelvic floor therapy, mental health support, and excision-trained surgeons. Dr. Jessica Opoku-Anane expressed the need for multidisciplinary endometriosis centers where endometriosis can be treated as whole-body systemic disorders. This was her motivation for establishing the University of California, San Francisco Endometriosis Center and Columbia University's Comprehensive Endometriosis Center, and now, she is working to establish comprehensive endometriosis care at Rutgers' Robert Wood Johnson University Hospital. As more comprehensive, multidisciplinary endometriosis centers are created, patients will find it much easier to access better care.
3. Community Is Critical to Support
What we heard:
Emma Maxwell and Mik Zazon both described how finding community—online or in person—has been critical to their endometriosis journeys. Sharing stories reduced the shame and isolation that often accompany chronic pain.
Why it matters:
Validation from peers can provide clarity, boost confidence, and even help people articulate their needs more clearly in clinical settings.
What you can do:
Join or recommend support groups, social media communities, or local meetups for endometriosis or other chronic, underserved conditions. You can also learn from many people with lived experience who have created hundreds of videos on Roon about their personal journeys with endometriosis.
Here are some helpful videos to start with:
🎥 How does endometriosis affect your dating life? Answered by Emma Maxwell
🎥 How have you talked to your partner about painful sex due to endometriosis? Answered by Gigi Robinson
🎥 How does fatigue from endometriosis affect your life? Answered by Imani Tyler
🎥 What is your best advice for someone navigating infertility and endometriosis? Answered by Rebecca Ross
🎥 How have you maintained relationships when you often have to cancel plans because of endometriosis? Answered by Leslie Mosier
4. Policy Isn’t Distant—It’s Personal
What we heard:
Connecticut State Representative Jillian Gilchrest described how a friend's endometriosis experience led her to create the Endometriosis Working Group. That group has already passed laws mandating provider education and launched a statewide biorepository to support research. Shannon Cohn described how her personal experience with endometriosis inspired her to create the endometriosis documentary Below the Belt in order to bring the conversation about endometriosis into the mainstream conversation in a meaningful way, including bringing it to the United Nations and the World Economic Forum.
Why it matters:
Systemic problems require systemic solutions. Legislation, funding, and education reform are critical—and possible when individuals speak up.
What you can do:
Reach out to your representatives and tell your story. Ask what legislation exists—or is missing—in your state to support health equity. Consider joining working groups or public comment sessions when health policy is discussed. You can also learn more by watching videos from distinguished advocacy leaders on Roon:
👤 Lauren Kornegay, founder of Endo Black Inc., has created content on Roon about the organization's mission and initiatives, and how you can get involved.
👤 Dr. Dan Martin, Executive and Medical Director at the Endometriosis Foundation of America, has created content on Roon about advocating for yourself when a provider is not taking you seriously.
👤 Connecticut State Representative Jillian Gilchrest has created content on Roon about endometriosis advocacy taking place at the local, state, and national levels, and how you can get involved.
About the Speakers
Dr. Jessica Opoku-Anane
Distinguished minimally invasive gynecologic surgeon who specializes in endometriosis care.
Shannon Cohn
Social impact strategist and filmmaker who created the endometriosis documentary Endo What? and film Below the Belt alongside Hillary Clinton.
Rep. Jillian Gilchrest
Connecticut State Representative who created the Endometriosis Working Group and has spearheaded bipartisan efforts to increase endometriosis support.
Mik Zazon & Emma Maxwell
Content creators who have shared their endometriosis journeys on social media and become beacons of hope and strength for the endometriosis community.
Ready to Explore Roon Endometriosis?
Roon Endometriosis is the most comprehensive online platform for learning about endometriosis — and it's completely free. On Roon, you can watch thousands of short-form videos from leading medical experts and people with lived experience. From questions about symptoms to diagnosis to self-advocacy or mental health, you can use Roon to navigate every aspect of the endometriosis journey. Get started by clicking this link: Take me to Roon Endometriosis
