When a woman develops endometriosis, the tissue that normally lines her uterus shows up in places it’s not supposed to be: the cervix, ovaries, the fallopian tubes, and elsewhere in the pelvis. The effects can be excruciating, with heavy bleeding and severe cramps during menstruation. Yet the disorder—which is thought to affect 11% of women in the U.S.—is often misdiagnosed or worse, dismissed as PMS. Fortunately these celebrities are speaking out about their personal experiences, which will hopefully raise awareness and ultimately encourage more research on this debilitating disease.
On the pain
“The stomachaches began quickly and were more severe than the mild-irritant cramps seemed to be for the blonde women in pink-hued Midol commercials. Those might as well have been ads for yogurt or the ocean, that’s how little they conveyed my experience of menstruating.” —Lena Dunham, Lenny Letter, November 2015
“I have a very strong threshold for pain, so if it was hurting me, there was something wrong.” — Julianne Hough, People, 2008
“I was diagnosed with endometriosis recently, but I know I have suffered from it for many, many years. It is a disease that causes extreme debilitating pain.” – Stephanie March, Let’s Talk Live, 2014
On how it can affect a relationship
“I think, yes, endometriosis was definitely a major reason that my marriage failed. I don’t think either of us understood it at the time–for as smart and intelligent as Salman is. I think that’s also because I hid it to a certain degree. Not intentionally, but it’s weird to talk about your period all the time. It’s the least sexy thing in the world to do.” —Padma Lakshmi, Entertainment Weekly, March 2016
RELATED: 10 Ways to Deal With Painful Sex
On finally getting a diagnosis
“I was recently diagnosed after years of suffering and finding myself doubled over backstage in the middle of my sets, or fighting back tears on an airplane, or even being in so much pain I would vomit or faint. With doctors essentially telling me I was being a big baby about my period, or misdiagnosing PCOS, etc etc. Finding out that I had [endometriosis] was the most bittersweet moment because it meant I wasn’t crazy! I wasn’t a “baby”! I had every right to be feeling like the world was caving in. But it was terrifying to find out.” —Halsey, Twitter, January 2016
On trying to get pregnant
“Despite my diagnosis I still wanted to try and have a baby, but not being able to have kids was an immediate fear. It made me feel out of control. I knew that I desperately wanted to have children and after speaking with a nutritionist that came recommended by my doctor, I was reassured that with the right eating habits and lifestyle changes (no sugar, no carbs!), I would have a better possibility of getting pregnant. I started to see a light at the end of the tunnel. I became extremely health conscious, changed my diet, and I think those changes helped with ultimately getting pregnant.” —Tia Mowery, Parents, September 2013
On the support a woman needs
“Suffering should not define you as a woman, and just because you’re a man it doesn’t mean that it doesn’t affect you! Help her to remove the taboos and the loneliness surrounding this disease; be understanding, show empathy, and don’t accuse her of being sensitive, delicate, or overly dramatic.” —Susan Sarandon, at the 2011 Endometriosis Foundation of America Blossom Ball.
RELATED: 15 Diseases Doctors Often Get Wrong
On feeling ashamed
“I thought if I talked about my personal limitations, people would say, ‘How healthy could she be?’ This was my weakness and my bad.” —Jillian Michaels, Redbook, June 2010
On the importance of speaking out
“If you don’t discuss it, many more women are going to find themselves unable to have children, or find themselves close to dying because it’s led to something else.” —Whoopi Goldberg, at the 2009 Endometriosis Foundation of America Blossom Ball.