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Reflecting on Patient Awareness Day 2019

Reflecting on Patient Awareness Day 2019

What’s it like to be in a room full of endometriosis experts? Here’s one endo newbie’s take.

For the latest installment of the Living Your Best Life with Endo series, the Endometriosis Foundation of America hosted a day-long symposium called Healthy Mind & Happy Pelvis for Patient Awareness Day 2019. I joined doctors, advocates, experts, and fellow endometriosis patients for the occasion at Lenox Hill Hospital's Einhorn Auditorium on a drizzly Sunday in early March.

I’m new to this world, though, like so many others before me, I experienced worsening symptoms for years and only recently learned that my pain has a name. Well, two names: endometriosis and adenomyosis. This revelation sent me gulping down information about the diseases wherever I could find it: friends, doctors, books (like Abby Norman’s Ask Me About My Uterus), podcasts, blogs, and search engines. According to the CNN article, Top 10 Questions You Had for Dr. Google in 2018, which researcher Noémie Elhad referenced in her Patient Awareness Day presentation, endometriosis was a top-searched health topic last year.

I was not alone.

After stepping through the glass doors to Lenox Hill Hospital, my husband and I snagged fruit and almond-milk yogurts from the thoughtful spread of anti-inflammatory breakfast foods, and we settled in for a full day of talks in the company of strangers who shared my most intimate endo experiences, along with those in their support networks. Dr. Tamer Seckin kicked off the day with a welcome address. In the hours that followed, experts stepped to the mic and shared their findings and experiences with the gathered crowd.

As I listened and scribbled notes, my knowledge about my own body deepened. “Pain can change our posture,” said physical therapist Jim Palmer, and I instinctively straightened my hunched spine. The topic of treating and managing pain threaded through the day. Sex therapist Carli Blau spoke frankly about the concept of “redefining sex” to find pleasurable activities that suit those experiencing pain with intercourse. When nutritionist Daphne Javitch hyped the importance of hydration, I reached for my water bottle. In the afternoon, we rose from our chairs and loosened up with a guided yoga break, linking breath to movement.

At the heart of the day were two panels, each featuring four people with endometriosis who shared their experiences. Every eye-opening story was powerfully honest and emotional, and kept the audience rapt. The Q&A-session-turned-meaningful-discussion that followed could easily have kept going for hours. The audience was hungry to swap stories and get tips from others on similar health journeys. When one man asked the panel for advice on how to best support his partner, the audience clapped and cheered. We need the voices of endo patients to be heard. We need supportive advocates.

We need to know that we are not alone.

The more I learn about this condition, now so close to my heart (and, more accurately, my uterus), the more outraged I grow at the depth of inequity surrounding endometriosis. I’m infuriated at the lack of education about what constitutes a normal period, harmful delays in diagnosis, misinformation about the disease and treatment options, high costs for necessary surgery, and the culture of disbelief around women’s experiences with their own bodies. Writer, podcast host, and holistic nutritionist Amanda Laird brought this into sharp focus during her talk. “Endometriosis is a feminist issue,” said Laird.

Detailing efforts to dispel stigma around menstruation, Assemblywoman Linda B. Rosenthal spoke about her advocacy that led New York City to lift the so-called “tampon tax” in 2016, eliminating state and local sales tax on menstruation products. She has also introduced bills to provide menstruation products in schools, homeless shelters, and correctional facilities, and a bill to distribute educational materials on menstrual disorders in schools. “Endometriosis is still in the dark,” Rosenthal said. Her words, and those of speakers throughout the day, had a galvanizing effect on me.

There is work to be done, and I can help.

When I got home, I took a small first step. I downloaded the Phendo app, speaker Noémie Elhad’s observational research study, and I started tracking and adding my data to the growing pool of information about endometriosis. Motivated by Patient Awareness Day, I’m committing myself to follow in the footsteps of the leaders who presented and to advocate for a world where endometriosis is understood, treatment is accessible, and women’s pain is believed.