Endometriosis is a painful condition that affects about 1 in 10 women of reproductive age — so it makes sense that plenty of celebrities are living and speaking out about the disease. Some Hollywood elites have partnered with organizations dedicated to raising awareness about endometriosis, while others have simply used social media to vent or seek encouragement from fellow patients.
Either way, hearing about those personal experience with endometriosis can teach us a lot about this sometimes debilitating condition. Here are a few things we’ve learned from celebs over the years.
1. Endometriosis means that uterine tissue is growing in the wrong place.
Tia Mowry was in her late 20s when she learned she had endometriosis, according to an essay the actress and cookbook author wrote last year for Women's Health. Multiple doctors dismissed her symptoms, until she finally found a physician who took her seriously. “She explained that endometriosis occurs when the tissue that belongs inside your uterus grows on the outside instead,” Mowry wrote.
Dr. Tatnai Burnett, a gynecologist at the Mayo Clinic who has not treated any of the celebrities mentioned here, told BuzzFeed Health that endometriosis pain can flare every month when endometrial cells break down during a woman’s period. “In the uterus, women shed that tissue every month through menstruation,” Burnett said. “When those cells are growing outside of the uterus, there’s nowhere for them to go.”
2. It’s the leading cause of infertility in women.
When Mowry received her diagnosis, she was suddenly faced with the prospect that she might not be able to have children. (Luckily, after getting treatment for her condition, the star has gone on to have two adorable kiddos.)
Not everyone is so fortunate. Endometriosis is the leading cause of infertility in women, according to the Endometriosis Foundation of America, a nonprofit co-founded by Top Chef host Padma Lakshmi.
“Endometriosis can damage the fallopian tubes, or the inflammation caused by the disease can also affect a woman’s ability to become pregnant,” Burnett said. But many women with endometriosis can have healthy pregnancies, he adds, sometimes with the help of fertility treatments.
Lakshmi herself has endometriosis, and also thought she might have difficulty getting pregnant. “I was told I would never have children naturally, that I only had a 10 to 15 percent [chance] of having them in vitro,” she told People in 2015. In 2010 she gave birth to a daughter, which she called “a miracle.”
3. It can also cause miscarriages.
Getting pregnant can be difficult enough for women with endometriosis, but they also face an increased risk of complications while they’re expecting.
The actress Gabrielle Union-Wade revealed in her 2017 memoir that she suffered “eight or nine miscarriages” because of adenomyosis — a type of endometriosis in which endometrial tissue grows into the walls of the uterus. In 2018, Union-Wade and husband Dwayne Wade welcomed a daughter via surrogate.
4. It can make sex painful and frustrating.
Julianne Hough recently opened up to Women’s Health about how endometriosis affects her sex life with her husband. "It can definitely cut things short," the actress and Dancing With the Stars champ said. "Sometimes we're in the middle and I’m just like 'AH, stop!'"
Pain with intercourse can be frustrating, but Hough and her husband work around it by finding other ways to get frisky. "There’s so much intimacy without actually having sex," she said.
5. Diagnosis can take years.
Jessica Williams, co-host of the 2 Dope Queens podcast, Instagrammed from her bed on New Year’s Eve about her struggle with endometriosis.
“Also I would like to add that killer 👏🏾cramps 👏🏾ain’t 👏🏾normal👏🏾,” she wrote. “I’ve probably had this for 10 years and only got diagnosed last month and even that was after I went to the ER AND two different doctors before finding the solution.”
This is common. “We know that the average time to diagnosis is about 10 years,” Burnett said. “That’s due to a variety of reasons: For one, women normalize painful menses — their mothers told them it was normal, and they think that everyone feels this way. And there’s also probably some dismissiveness by physicians who tell their patients that nothing’s wrong.”
6. Birth control can help some people.
When Planned Parenthood tweeted in 2017 that access to birth control should not be controversial — and that nearly 90% of women of reproductive age have used it in their lifetime — Padma Lakshmi chimed in with another fact worth considering. “Birth control also helps combat symptoms of #endometriosis, among many other uses,” she replied on Twitter.
Birth control pills or hormonal intrauterine devices (IUDs) can help relieve endometriosis symptoms by suppressing hormonal fluctuations, Burnett said. This can shorten the duration of monthly periods, and may reduce pain and heavy bleeding, as well.
7. Heating pads can be a lifesaver.
Halsey, the singer and songwriter, is a self-proclaimed #endowarrior. Since her 2014 diagnosis, she’s shared much of her own endometriosis story on social media.
In 2017, she snapped a backstage shot of a heating pad wrapped around her stomach. “Sometimes I feel like I can barely stand,” she wrote. “But on nights like tonight, I slap on a heating pad and take some medicine and go hustle it out.”
8. Besides killer cramps and infertility, there can be other signs that something’s wrong.
Endometriosis can be linked to other health complications as well. For one, it can be associated with unusually heavy periods, Burnett said. Lena Dunham, who has famously chronicled her journey with endometriosis, can attest to that: In 2017, she wrote on Instagram that she’d had her period “for 13 days.”
Also in 2017, the singer Monica told People that she was finally diagnosed with and treated for endometriosis after she’d been hospitalized numerous times for migraines — a condition that's been linked to endometriosis in numerous studies.
Other symptoms of endometriosis can include lower back and abdominal pain (either during your period or all month long), pain during bowel movements or urination, fatigue, diarrhea, constipation, or nausea, Burnett said.
9. Surgery is an option — but it’s not a guarantee.
For women with severe symptoms that aren’t alleviated with hormone treatments, doctors may recommend surgery. Options range from laparoscopic procedures to remove tissue growths to — as a last resort — a complete hysterectomy (removal of the uterus) or oophorectomy (removal of the ovaries).
Surgical procedures can offer relief for many women with endometriosis, Burnett said. But there is a 50-75% chance that their pain will come back within five years, and that they’ll need additional surgeries.
Lena Dunham has documented multiple endometriosis procedures in recent years — including a two-hour operation in 2018 “to remove my left ovary, which was encased in scar tissue & fibroids, attached to my bowel and pressing on my nerves,” she wrote on Instagram.
Dunham had previously undergone a hysterectomy to remove her uterus and cervix, the actress wrote in Vogue a few months earlier, along with several surgeries before that.
10. Finding support is an important part of the healing process.
Endometriosis sufferers have fostered a strong community online where they can share tips, commiserate about their symptoms, and celebrate stories of successful treatments. "There’s a tribe of women who support each other like crazy on websites like SpeakEndo," Julianne Hough told Women’s Health.
Hough also encouraged other women with endometriosis to learn as much as they can about their condition and its treatment options. "The more educated you become, the more powerful you’re going to feel," she said.