On this week’s 51%, we discuss the inflammatory condition endometriosis: what it is, what it looks like, and how it’s treated. We also speak with Linda Griffith, scientific director of the MIT Center for Gynepathology Research, about how engineers are working to better understand the disease.

Guests: Linda Griffith, scientific director and co-founder of the MIT Center for Gynepathology Research; Dr. Kathy Huang, director of the NYU Langone Endometriosis Center; Sarah Digby; Natalie Rudd, learning and education manager at the National Women's Hall of Fame

51% is a national production of WAMC Northeast Public Radio. It's produced by Jesse King. Our executive producer is Dr. Alan Chartock, and our theme is "Lolita" by the Albany-based artist Girl Blue.

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You’re listening to 51%, a WAMC production dedicated to women’s issues and experiences. Thanks for tuning in, I’m Jesse King. 

Most of us are aware that it’s Women’s History Month, but the month of March is also an important time to discuss women’s health. It’s Endometriosis Awareness Month, a time to read up and spread the news on a condition that impacts roughly 1 in 10 women (or people with uteruses) worldwide. Despite those numbers, endometriosis has historically been written off as a “women’s disease,” a taboo topic of conversation, or simply part of being a woman in general (after all, no one enjoys their period) — so there’s still a lot we don’t know about it. So that’s what we’re focusing on today. The big questions: what is it, what does it look like, and how is it treated. 

To use the definition offered by the Endometriosis Foundation of America: endometriosis is when tissue similar to the inner lining of your uterus, called the endometrium, is found outside your uterus — where it shouldn’t be. Typically, endometriosis is found on organs like the uterus, the fallopian tubes, ovaries, bladder, etc., but in extreme cases it can advance outside the pelvic cavity to other areas, like your appendix or even your lungs. The problem is that this tissue still acts like the tissue inside your uterus, so it bleeds with your monthly menstrual cycle. This can result in painful inflammation and lesions that contribute to symptoms including: painful and abnormal periods, bowel and urinary issues, neuropathy, infertility, and more. Currently, there is no cure.

Our first guest today is Sarah Digby, a 32-year-old former education specialist now living in New York City. Digby grew up in San Antonio, Texas, where she says her access to sex education was extremely limited. Even at home, it wasn’t typical for her family to talk about their bodies, so she grew up knowing very little about her own. But the moment she started getting her period at age 12, she knew something was off. 

"The way that I was experiencing periods, the way that I was bleeding, and the amount of pain that I was in — it was nothing I had been led to expect I would experience from the pre-teen magazines I’d read, and what cramps would feel like," says Digby. "They would be really bad the first couple days of my period — and I had long periods, they lasted about seven or eight days. They'd kind of abate, and then I'd have some pain towards the end...How could something so painful be so accepted and natural? Even though that’s what people were telling me. To be fair, I was a dramatic teenager — but I was also in a lot of pain."

Digby says her period caused her to routinely miss school during her high school and college years — but that didn’t seem to concern many of the people in her life. She never got used to the pain, but over time, Digby says she basically learned to live around it, or at least, in her words, “shut up about it.” By the time she moved to New York and started seeing a new OB GYN in 2008, and it didn’t even occur to her to mention the regular pain she was experiencing.

But the cysts started happening.

"One of them happened on