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Think back to the first time you heard the term “endometriosis” (which is a painful condition characterized by tissue similar to the lining of the uterus growing outside of the uterus).
If you really think hard, there’s a decent chance that it was when you heard a celebrity speak out about their experience with the condition.
Receiving an endometriosis diagnosis is notoriously difficult — according to Speak Endo, it frequently takes up to ten years for someone to get diagnosed. There are so many reasons for this (medical gaslighting, anyone?), and lack of awareness is definitely one of those reasons.
While we are making great progress in our cultural awareness of women’s health conditions (including endometriosis), we’re still fighting off shame and stigma around menstrual health issues, which leaves women afraid to voice their experiences — and in turn, leaves us all fumbling for information on what is concerning where menstrual health and pain are concerned.
But celebrities have the power to seriously chip away at that shame and stigma. By using their platforms to talk about their own experiences with endometriosis, they don’t just normalize the experience of living with it — they also help other people recognize the symptoms and warning signs in their own bodies.
Celebrities with endometriosis
These celebrities have all been open about their experiences with endometriosis, and have done wonders to bring awareness to the condition by doing so.
Olivia Culpo
In 2020, Olivia Culpo announced her diagnosis on Instagram. "I've never publicly said this before but I have endometriosis," Culpo wrote on an Instagram Story, according to Women’s Health. "Aka the most excruciatingly painful cramps/periods. Anyone else reading this have Endo? No fun."
Since then, Culpo has been extremely vocal about endometriosis, and a major force in bringing awareness. She’s even spoken up about the invalidation she and so many other endometriosis patients have faced.
“Being made to feel like my chronic pain was an overreaction was disheartening and confusing. Who was I to disagree with not one, not two, but many highly educated and well-intending doctors? Funny enough, it was the stories I found on Reddit forums, YouTube videos, and instagram accounts that validated what I knew to be true- that my symptoms were not normal and the doctors were wrong,” Culpo wrote in an Instagram post. “After dozens of wrong turns, I finally landed on the truth, which was that I had severe endometriosis and needed surgery if there was any hope to salvage my reproductive organs. If it wasn’t for those who shared their stories on random blog posts, I never would have found the courage to keep advocating for myself. It’s a gift to be able to pay it forward by sharing my story.”
Lena Dunham
Lena Dunham has spoken about living with endometriosis frequently. At 31, she chose to have a hysterectomy in hopes of ending the debilitating pain she was experiencing.
“In August, the pain becomes unbearable. I am delirious with it, and the doctors can’t really explain. The ultrasound shows no cysts, no free fluid, and certainly no baby. But that doesn’t help the fact that it hurts so bad that the human voices around me have become a sort of nonsense Teletubbies singsong. With pain like this, I will never be able to be anyone’s mother. Even if I could get pregnant, there’s nothing I can offer,” Dunham wrote in a Vogue essay detailing her decision and experience.
“I try to absorb the gravity of the moment—at least a dozen people dressed in blue scrubs with face masks, the fact that I could run right now but instead I am choosing to stay, choosing this,” Dunham continued, writing about the day of her surgery. “I have to admit I am really choosing this—I gave up on more treatment. I gave up on more pain. I gave up on more uncertainty.”
Halsey
Halsey was diagnosed with endometriosis after a miscarriage, and they reflected on the experience at The Endometriosis Foundation's 2018 Blossom Ball.
"I didn't even know I was pregnant and I had a miscarriage and I remember laying in a bed in a hotel room with a towel between my legs, bleeding and staring at my very young, very scared, very male managers who had no idea what was going on and I remember them looking at me and saying, 'I mean, it’s 33 million impressions, this concert is kind of a big deal,” Halsey said. “I took a Percocet and put on an adult incontinence diaper and I wore a long t-shirt that would cover it and I got on stage and I performed in front of about 1,200 screaming teenage girls."
Bindi Irwin
Bindi Irwin opened about living with endometriosis — and her fight to be diagnosed with the condition — in an Instagram post.
“I battled for a long time wondering if I should share this journey with you in such a public space. It came down to the responsibility I feel to share my story for other women who need help.
For 10yrs I’ve struggled with insurmountable fatigue, pain & nausea. Trying to remain a positive person & hide the pain has been a very long road. These last 10yrs have included many tests, doctors visits, scans, etc. A doctor told me it was simply something you deal with as a woman & I gave up entirely, trying to function through the pain,” she wrote.
In a subsequent interview with PEOPLE, Irwin revealed she’d had surgery to remove some of the lesions associated with the condition.
“My health now is night and day,” she said. “It took a while to recover because it was such an extensive surgery. They took out 37 lesions and now I’m a completely new person. I’m actually able to go on a walk with my family. I’m able to do the conservation work. I’m able to be there for our daughter, finally. I’m able to run around with her, to play with her, to have fun and revel in her joy.”
Mae Whitman
Mae Whitmen spent years dealing with horrific pain — to the point that sometimes, she wondered if she was dying.
"I tried birth control and all the things that they said and my cramps were not normal. I went to so many doctors over the years. And I would just say, 'What is it?' First they would say period pain is normal. And I was like, 'Okay, I'm barfing into the toilet seven times every single time.' And then they would say, 'Well, you should go on birth control because it could be this weird thing called endometriosis, that we don't really know a lot about and the only thing you can do to fix it, is this really complicated surgery, and even then you usually have to come in like 10 times to get that to work’,” Whitman told PEOPLE. "I remember I kept going, and I just would leave these appointments just crying hysterically in my car, because I felt so gaslit," she added "I didn't understand what it was."
"I had a particularly bad time where I ended up having to go to the emergency room,” she added. “I thought I was dying, and I have a really, really high tolerance for pain.”
Padma Lakshmi
Padma Lakshmi was in her teens when she began experiencing incredibly painful periods. For decades — literally — she chalked it up to expected menstrual cramping. It wasn’t until she was 36 that she was diagnosed with stage four (or severe) endometriosis.
"At first, I was relieved. It wasn’t until a year after the surgery that I started getting really pissed," she said during an interview with Women’s Health. "Like, ‘Wait a minute, I lost a week of my life every month of every year since I was 13 because of this shit, and I could have had this operation at 20 rather than 36? I’m shocked that a health professional didn’t say, 'This is weird. Your cramps are above and beyond what they should be.'
Tia Mowry
Like so many endometriosis patients, Tia Mowry was not taken seriously when she began seeking an explanation for her pain, migraines, and eczema.
"I was not being taken very seriously when it came to my symptoms," Mowry told TODAY Parents. "You know your body more than anyone. You are the one living with what you’re going through day in and day out. Don’t let anyone tell you that something is not wrong with you."
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Eventually, Mowry was diagnosed with endometriosis, and was told she had a “textbook case”.
"I experienced four or five years of debilitating symptoms," Mowry said. "Why didn’t the other doctors (I saw) diagnose me if I was a textbook story?"
Chrissy Teigen
In 2021, Chrissy Teigen tweeted “can anyone tell me their experience after endometriosis surgery? what is the recovery-difficulty level? like can I make soup after?”
Teigen, who was hugely instrumental in bringing conversations about infertility to the mainstream, shared an update after the surgery as well. "Usually I'm really good after [surgery]," she said, according to PEOPLE. "This one's a toughie. My whole belly got numbed. It's gonna be numb for like, a couple days. Couple of the next days, hopefully they'll stay that way."
Dolly Parton
Dolly Parton was diagnosed with endometriosis in the 80s, long before people spoke openly about living with the condition. According to the Foundation for Biomedical Research, Parton collapsed onstage during a performance due to pain related to endometriosis.
She had a partial hysterectomy at age 36, which caused her to spiral to a dark place.
“Suddenly I was a middle-aged woman. I went through a dark time,” Parton reportedly wrote in her book, Behind the Seams: My Life in Rhinestones.
Julianne Hough
Endometriosis has the power to truly take over a person’s life, and Julianne Houhg, who suffers from the condition, opened up about how it affects her sex life during an interview with Women’s Health.
“It can definitely cut things short,” she said. “Sometimes we’re in the middle and I’m just like ‘AH, stop!’ It can be really frustrating.”
Hough began experiencing symptoms of endometriosis at age 15, but didn’t get a diagnosis until she was 20.
“I thought it was just what it feels like to be a girl with bad periods,” she said. “I didn’t think to go to the gynecologist. Because I’m a competitor, I felt like I had to push through the pain and just work.”
“It was an emotional trauma,” she added of receiving a diagnosis “At the time, I felt very lonely and like nobody understood me. I had no idea that [so many women] had endometriosis.”
Zara Hanawalt is a freelance journalist and mom of twins. She's written for outlets like Parents, MarieClaire, Elle, Cosmopolitan, Motherly, and many others. In her (admittedly limited!) free time, she enjoys cooking, reading, trying new restaurants, and traveling with her family.
