9 Celebs Advocating For Adequate Endometriosis Care (That's Long Overdue)
Despite affecting one in ten women and girls of reproductive age around the world, endometriosis remains a lesser-known and often "missed" disease. In an alarming number of cases, women wait decades to receive an accurate diagnosis. Luckily, more and more women with a platform are speaking up.
So, what is endometriosis? According to the World Health Organization (WHO), it is a chronic condition where tissue similar to the lining of the uterus (known as the endometrium) grows outside the uterus. This can result in severe pain during periods, sex, bowel movements, and urination, as well as bloating, nausea, fatigue, and even depression or infertility. Because of the broad range of symptoms, it can be difficult for healthcare providers to make a diagnosis. As a result, many women with endometriosis are frequently dismissed by doctors and told that their symptoms are a "normal" part of the menstrual cycle. Unfortunately, even recent studies show that "endometriosis has remained largely ignored in government policy and research funding globally."
While a cure for endometriosis does not yet exist — again, pointing to the need for more research — there are medical interventions that can alleviate suffering. The WHO itself contends that early diagnosis is essential for proper endometriosis treatment. However, a challenge that remains is ensuring women who may have the condition know how to advocate for themselves. This is where efforts around education and awareness raising can move the needle, which is exactly what these celebrities are doing.
Padma Lakshmi on the Frontier of Awareness Raising
Actor, author, activist, and "Top Chef" host Padma Lakshmi is often credited with being the first celebrity to use her voice to shed light on endometriosis, which she started doing back in 2009. As Lakshmi explained in an interview with Women's Health, her symptoms started when she was 13 years old, but she didn't receive a diagnosis until she was 36. That diagnosis led to surgery which has provided her with much relief; however, it also made her realize that she had suffered unnecessarily for over 20 years. This angered her, understandably.
Lakshmi funneled that anger into co-creating the Endometriosis Foundation of America with her own doctor — the man who had diagnosed her –- specialist Tamer Seckin, MD. They launched this initiative on International Women's Day in 2009, and it exists to this day. Their website explains that the Foundation "strives to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research." They emphasize their interest in educating both the medical community as well as the broader public and stress the importance of early and prompt diagnosis.
One of the projects initiated by the Foundation is called the ENPOWR Project, which raises awareness and promotes the pursuit of treatment among students. According to the website, it is the "only school and community-based endometriosis education program in the United States," and to date and has educated over 32,000 students about endometriosis in high schools across New York.
Whoopi Goldberg and the Potentials of Cannabis
While Whoopi Goldberg is considered lucky to have been diagnosed early, some 40 years ago, she did not realize until Lakshmi approached her about speaking at an Endometriosis Foundation gala how few women were aware of the disease. Lakshmi informed her that gala, hosted soon after the launch of the Endometriosis Foundation in 2009, was the first of its kind. Once again, the well-known actor and comedian was shocked. During her speech, she told the audience that her conversation with Lakshmi prompted her to immediately call her daughter and ask her if she knew what endometriosis was. Her daughter's response? No.
"You know, and it occurred to me that if [my own daughter] didn't know, then there were hundreds of thousands of girls out there that don't know," Goldberg concludes. She went on to ask those in attendance, and particularly the press, to spread the word about the condition. "We have a duty tonight ... You only have to tell one other person what you have heard ... or ask them 'Have you ever heard of [endometriosis]?' If the answer is no, share with them what you learned tonight."
At the time, Goldberg herself offered to have Lakshmi come on "The View" and talk about her experience in the hopes of educating their large female-leaning audience. Years later, in 2016, Goldberg went on to co-found Whoopi and Maya, a line of medical cannabis products designed specifically to help with menstrual-related pain management. While the company is no longer in operation, its website claims to have proved that "there's a market for this medicine."
Amy Schumer Uses Comedy to Underscore the Belittling of Women's Pain
The morning after Amy Schumer underwent surgery to her uterus and appendix, she posted a video on Instagram saying she felt "hopeful." She explained that the surgery was in response to a recent endometriosis diagnosis, adding that "[Women] have a right to live pain-free." In a later video, she elaborated on her experience, telling followers that she was 40-years-old when she learned what endometriosis is and how it can be managed. Poignantly, she added, "What I learned today is that your periods shouldn't be painful."
"From the time that I got my first period, I was knocked over, vomiting from the pain. And as women, we are told, '[Don't] be a drama queen,'"she said "We need to not confuse advocating for ourselves with being bitchy."
In December of 2022, Schumer appeared in a docuseries called "The Check Up with Dr. David Agus," in which she talks about her endometriosis experience, as well as how she has used comedy to cope with other various medical issues she has faced in her life. Schumer also chronicled her difficult pregnancy in a separate docuseries called "Expecting Amy." It is clear from both series that the comedian is committed to sharing her personal hardships as a means of educating, even as she maintains her sense of humor. "When I get a helpful female tidbit, I like to pass it on to my sisters," she says in her post-surgery Instagram video, staring at the camera with a half smile. She then concludes by pointing out that she has a catheter in, ending her advocacy on a lighter note.
Lena Dunham is Transparent About a Difficult Decision
In February of 2018, director and actor Lena Dunham published a very personal essay in Vogue about her decision to get a hysterectomy at age 31 after all other endometriosis interventions failed to end her pain.
This was not the first time Dunham had written publicly about her endometriosis journey. Back in 2015, she wrote a lengthy post in her online newsletter Lenny about her brutal journey with the disease, starting as far back as her first period until finally being correctly diagnosed well into her 20s. As she so heart-wrenchingly puts it in her post, "It's a sad and beautiful moment when you realize just how much you have let yourself endure."
Fully embracing her reality, Dunham went on to use her Instagram account to raise awareness of endometriosis by talking about the ways in which it was affecting her, occasionally accompanied by selfies with her surgery scars. She also explained to Vogue that she eventually chose to move forward with the total hysterectomy after "years of complex surgeries measuring in the double digits" in addition to "pelvic floor therapy, massage therapy, pain therapy, color therapy, [and] acupuncture." She admitted it was not an easy undertaking given her desire to be a mother. That being said, she has since remained adamant about the benefits of the surgery, and points out that she still has options when it comes to being a parent.
Tia Mowry and the Need for Representation
In 2018, actress Tia Mowry published an essay in Women's Health describing how she had suffered from excruciating period pain well into her late 20s. Finally, she went to see an African-American doctor who immediately knew the likely cause of her pain. That same doctor explained how many Black women, in particular, frequently deal with misdiagnosis for menstrual conditions due to lack of research done on that demographic. According to one 2019 study, Black women are 49% less likely to get an endometriosis diagnosis compared to white women.
Mowry says she received ample support from family and friends for her diagnosis, but soon realized that she had not seen many other African-American women speaking publicly about living with endometriosis. As a result, she decided to come forward with her own experience in hopes of making other women feel less alone. She also wrote and released a cookbook full of recipes designed to help minimize inflammation, something she has said helps to manage her pain.
Last March, Mowry posted a photo on Instagram with a caption expressing her thoughts on the complexity of pregnancy and endometriosis: "Having endometriosis meant pregnancy wasn't easy for me ," her caption begins "And I know that I'm not the only one who has been on that same journey. But I learned that having endo doesn't necessarily mean that a person's dream of having a child won't come true." Mowry is the proud mother of two.
Molly-Mae Hague Relies On Social Media to Keep Fans Informed
Molly Mae-Hague, a former Love Island contestant, had on numerous occasions told the viewers of her YouTube vlog that she had long suffered from acute menstrual pain. In one particular post, she was very frank about her symptoms. "I literally can't stand up, I'm screaming in pain, no painkiller will make me feel any better, I have to take days and days off work. I feel like I've been in a car crash after I've been on my period; it's not normal," she exclaimed.
Some of those viewers encouraged the star to ask a doctor about endometriosis. In a video posted in June 2021, she told her fans that doctor after doctor dismissed her concerns. She finally tracked down an endometriosis specialist who confirmed her suspicion, but that was after a lengthy process.
After deciding to undergo a recommended surgery, she returned to YouTube to keep her fans in the loop about the ups-and-downs of her journey. In a video from October 2021, she explained, "The operation was way, way harder to go through than I thought. My recovery time was quite a bit longer than I had planned, and I was just a bit of a mess after that surgery." She promised her attentive followers that she would elaborate on her experience further down the road. And she did just that: In March 2022, she devoted an entire video to the subject entitled "My Life With Endometriosis."
Alexa Chung Raises Funds for Research
British designer and model Alexa Chung took to Instagram in July of 2019 to announce that she had endometriosis: "I don't want to belong to any club that would accept me as a member, but here I am," she wrote. At the time, she didn't elaborate further, but in a post one year later she detailed her experience with the disease and how she obtained the diagnosis. She also thanked the doctors who suspected she might have endometriosis, and acted swiftly to address it, adding, "I understand I had the privilege of being believed and listened to," she wrote. Chung also pointed to the fact that a quick Google search of endometriosis makes clear how little is known about the disease, and suggested additional funding go towards studying the disease.
Chung's advocacy didn't stop there, either. The following year, she partnered with the World Endometriosis Research Foundation to launch a t-shirt line in order to raise money for research. Writing about the experience in another Instagram post, she explained, "It would be amazing to raise awareness around this pervasive disease so that it can be diagnosed earlier and through funding research into it I hope it can be better understood and eventually cured."
Anitta Encourages Women to Seek a Second Opinion
On July 10, 2022, 29-year-old Portuguese singer Anitta posted a long Twitter thread recounting her experience with and recent diagnosis of endometriosis. "We need to talk about endometriosis," she began. After listing her symptoms, she explained how her diagnosis almost came completely by chance. During a hospital visit to see her dad while he underwent treatment for lung cancer, Anitta happened to tell a friend — a doctor — about her menstrual pain. This friend insisted they run some tests. "The doctor (sent by a guardian angel) did an MRI and there it was. ENDOMETRIOSIS," Anitta wrote. "The next day she sent me to a specialist to run all the other necessary exams."
She went on to express her frustration with both the doctors that had previously dismissed her concerns, as well as the way the media had covered her health issues in the past.
She encouraged women everywhere to "[s]eek more than one doctor, more than one opinion. If one doesn't solve it...go to another until it's solved." She concluded by calling for what many of her fellow advocates have also demanded: Here is my appeal for more information for women. More access, more general interest in taking care of the female body so that we can be free and be able to take care of ourselves."
Halsey Offers Hope and Encouragement
Back in January 2016, singer and songwriter Halsey shared via Twitter that she was having a rough day thanks to endometriosis. She went on to declare that anyone else with the diagnosis shouldn't feel alone and that she understands how hard it can be. "Finding out that I had endo was the most bittersweet moment because it meant I wasn't crazy! I wasn't a 'baby'!" she wrote. She then reminded her followers that she was always willing to listen to them vent if they needed it and offered an encouraging message for those dealing with the condition. "I have managed to live a wild, incredible, and unpredictable life with Endo and I am here for you!"
In the years since, Halsey has continued to publicly share her experience with the disease, as well as advocate for women to trust in and speak up for themselves. In 2018, she became a recipient of the Blossom Award from the Endometriosis Foundation of America. During her remarks, she insisted again on the need to reject this assumption that excruciating period pain is normal. She concluded her statement by encouraging further dialogue. "Keep talking to your friends, keep supporting your loved ones ... make sure that they don't feel ashamed to talk about their ... reproductive experiences, because the only way for this — for us to gain control of this — is to speak about it," she said.
Halsey herself has not stopped participating in that dialogue, sharing on Instagram in April 2022 that she would once again be attending the Grammy's three days after endometriosis surgery. "Only posting this to say, if you see me be gentle lol I'm fragile. Fragile but excited :)"