"I Couldn't Sit, Stand, or Sleep": What It's Really Like to Have Endometriosis

Photo: Illustration by Stephanie DeAngelis

The conversation around female reproductive health is changing, sure—namely, in that we're actually talking about it at all. But how much time will it take for women to unravel the centuries of society-imposed shame projected onto their bodies? Think about it: We've only just started worrying about the toxic ingredients lurking in our tampons over the last few years—before that, many of us probably weren't even aware that this was something worth considering.

At best, this deep-seated stigma keeps us less informed than we should be. At worst, it deters those who suffer from painful and abnormal symptoms from seeking the medical help they need—and even shames them for being sidelined by said symptoms in the first place. This seems to be a theme with endometriosis, a condition in which tissue that normally lines the uterus grows outside of it. Often, women who suffer from endometriosis go for years without a proper diagnosis; they chalk up their debilitating pain and extreme bleeding to bad periods instead of endometriosis symptoms.

That's why we need to talk about it—not just for the sake of normalizing talk around our reproductive health in general, but also with the hope that women in pain might suddenly find some clarity and seek the help they need and deserve. With that in mind, we asked four women with endometriosis to share their stories: the terrifying symptoms, the surgeries, how they manage it all, and everything else in between.

Their names have been changed, but their accounts are honest, brave, and incredibly eye-opening. Keep reading to see what life with endometriosis is really like.