WTH Is Endo? Watch This Panel Discussion to Find Out
It’s a cruel irony that endometriosis affects around one in ten women, but there’s still a major lack of reliable information out there about this painful disorder. (And if you’re one of the people who still has a lot to learn about endo, we’ve got a super helpful overview for you right here.)
So, as part of our ongoing efforts to support Endometriosis Awareness Month in March, we hosted a Zoom panel featuring three of the smartest women we know, all of whom have a lot of knowledge to drop. Didn’t make the panel? No problem—you can watch the recorded video below. You can also keep reading to get a Cliff’s Notes version of what our experts covered during this panel, so you’re totally up to speed on all things endo.
Meet our panelists
Samantha Rothenberg, Activist
Samantha Rothenberg, also known as @violetclair, is an artist and women’s health activist. She is an endo advocate and shares her personal experience with endo through her art.
Dr. Erica Montes, OB/GYN
Dr. Erica Montes is a Board-Certified Obstetrician and Gynecologist and a Fellow of the American College of OB/GYN. She’s also the founder of The Modern Mujer, a bilingual platform empowering women to learn more about their bodies.
Dr. Saya Nagori, Panel Moderator
Dr. Saya Nagori is a Board-Certified Ophthalmologist and Glaucoma Specialist. She is SimpleHealth’s founding physician, and an advocate for women’s health through the FemHealth Project.
The big three takeaways
1. Only *you* can really know your body, so don’t be afraid to advocate for yourself
Doctors have the scientific knowledge to describe clinical symptoms of endometriosis. Friends and family members are probably well-meaning when they tell you “Well, I’m sure it will get better soon” or “Wow, that’s crazy that your periods are so bad.” Some people might even doubt your experience; in our talk, Samantha specifically remembered one doctor that told her the endometriosis was all in her head (we’re mad just thinking about that, tbh).
But at the end of the day, you’re the only one who lives in your body. If you have a gut instinct that something is wrong, trust your body and listen to it—even if doctors or other people don’t believe you at first.
To that end, if you think you have endo and your doctor isn’t listening to you, you should feel empowered to keep going—even if that means seeing a different doctor. Samantha recalled all the hoops she had to jump through when getting her diagnosis, advising us to “listen to your body, keep marching on, and fight for the care you deserve.”
2. Endometriosis is tricky to diagnose (even with an ultrasound)
As Samantha noted, one of the most frustrating parts of living with endometriosis is that symptoms can vary from person to person. That often means it takes a doctor a long time to recognize that endo could be a possibility.
Dr. Montes also expanded on how difficult it is to diagnose endometriosis without a laparoscopy (that’s a surgical diagnostic procedure used to examine the organs inside the abdomen, and it’s often used to confirm endo). Endometriosis is often misinterpreted as gastrointestinal problems, and imaging can be unreliable too; in fact, a negative ultrasound does not necessarily mean you don't have endo. That’s why it’s so important to keep seeking a diagnosis if you think you might have endometriosis.
3. Search for communities online to support you
While you might not know anyone else with endometriosis in your immediate circle, you can easily connect with others online. Samantha specifically recommended Nancy's Nook Endometriosis Education Facebook group as a great community for support and education (in fact, this is where Samantha found the doctor who eventually did her laparoscopy).
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