Welcome to Lenny Letter No. 8: The Endometriosis Issue

Awareness is key for this disease that affects 10 percent of American women, but often goes undiagnosed for decades.

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Hey Lennys!

The first time I really learned about endometriosis was over drinks a few years ago with my friend Lizzie O'Leary. Lizzie is an award-winning reporter and a public-radio correspondent. She does the kind of brave, deep reporting that I always admired but was too timid to do myself: she was on the ground during 9/11, the aftermath of Hurricane Katrina, and the BP oil spill, revealing the humanity behind these catastrophic events. When Lizzie told me that she did all of this while also suffering from a chronic disease that gave her crippling, unbearable pain and made her exhausted and nauseous every time she had her period, I was shocked — and then even more impressed by all her accomplishments.

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I bring Lizzie up because I believe she was doing important work by telling me —and also the readers of Cosmopolitan — her story. Which is what we're trying to do in this special issue about endometriosis: raise awareness about the disease.Endometriosis is when the cells that line the uterus (endometrial cells) end up in other parts of the body (in one documented case, they spread to a woman's clitoris). When you have your period, these cells behave the way they do in the uterus: they bleed. But the blood has nowhere to go. When the blood gets trapped, it can create cysts, painful scar tissue, and blocked fallopian tubes, and it can even bind your organs together. Even though the disease affects 10 percent of American women, it took Lizzie two decades to get a proper diagnosis, because her doctors didn't take her pain seriously.

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Misdiagnosis is an all-too-common experience of endometriosis sufferers, which is why it's imperative that our readers know more about it — so they can advocate for themselves. Both Lena and Jenni have endometriosis. Jenni was repeatedly hospitalized as an eighth grader because her pain was so intense. Doctors kept telling her it was appendicitis and then sending her home without a diagnosis. She wasn't told she had endometriosis until she was in her 20s.

Lena went half her life without knowing the cause of her extreme discomfort. Young women's pain, especially around their periods, is often dismissed as whining, or even a sign of mental imbalance. Lena's moving essay in this issue is a gorgeous meditation on how endo has affected her entire self-conception and how an understanding doctor can change your life.

Next up, we have Lola Pellegrino's fantastic interview with Top Chef host Padma Lakshmi. It took more than 20 years for Padma to get a diagnosis of endometriosis (are you noticing a pattern here?), and after she learned she had the disease, she decided to use her star power to help start the Endometriosis Foundation of America. Then, we have another beautiful, wry essay by A.N. Devers, about deciding to celebrate her last period. A.N. is getting a hysterectomy after years of battling endometriosis, and she got her pals together to say good riddance to her uterus, which has always had a bad attitude. Finally, we have Marisa Meltzer's interview with Dr. Tamer Seckin, who cofounded the EFA with Padma and is an expert in the disease. He reveals why women are so frequently misdiagnosed and explains how endo is treated. Marisa also covers some alternative treatments for endometriosis that may help relieve symptoms.

Something Padma says in this issue about what endometriosis cost her really stuck with me. Her endo was so debilitating whenever she had her period that it kept her from working and dating during those weeks. "That's 25 percent of my life, and I could never get that time back," she said. We don't want any other women to lose that time. If you already have an endometriosis diagnosis, consider opening up about it — the way Lena, Jenni, A.N., and Padma have here. If you want to donate to the Endometriosis Foundation of America, click here, or to the Endometriosis Association, click here. If you think you may have the disease, resources are here.

Stay healthy out there.

xx

Jess