176 million people worldwide have endometriosis. Despite its prevalence, many people don’t know what it is. It's not talked about, it's under-researched, and it's persistently underfunded. For Endometriosis Awareness Month, Bustle UK is hearing from people living with the condition and doctors who specialise in it, and is opening up the conversation to help you get the treatment you deserve.
Coping with chronic pain, heavy periods, fatigue, and the many other symptoms associated with endometriosis can be a debilitating ordeal. However, something that can help those dealing with the condition is knowing that they're not alone. Some
celebrities have shared their struggle with endometriosis, in the hopes that their stories will help others.
Endometriosis is defined by the NHS as "A condition where tissue similar to the lining of the womb
starts to grow in other places, such as the ovaries and fallopian tubes". It can affect people at any age and symptoms include debilitating pelvic pain, heavy or irregular periods, and fatigue, to name just a few.
These are some of celebrities who have opened up and shared their experiences with the condition in an effort to make people aware that endometriosis is very real and people need not suffer in silence.
Country music goddess, legend, and all round hero Dolly Parton has been open about the physical and emotional pain that endometriosis has caused her. In a 2019 interview with
The Sun, Parton shared that aged 36 she had to have a hysterectomy because of endometriosis. She’s been open about the devastating effect that experience had on her and how her inability to have children sent her to a very dark place. She went on to recover from this period and told Wootton that her being a mother just wasn’t meant to be. She also admitted that the amount of free time afforded to her for working on her career might not have been possible had she become a mother, saying in true poetic Parton style, I always think, ‘Well, maybe God didn’t mean for me to have children, so everybody’s children could be mine.’” Pierre Suu/Getty Images Entertainment/Getty Images
British TV presenter, writer, model, and fashion designer Alexa Chung revealed via her Instagram account in July 2019 that she has endometriosis. She shared a photo of herself, taken in a hospital, and explained that having the illness was not a club she ever desired to be in.
She captioned the image: “I don’t want to belong to any club that would accept me as a member, but here I am,” with the hashtags
#endometriosisclub #partytime #woohoo #lifelongmembership #sorryifyouhaveittooitsucks #endometriosisawareness.
In March 2020, for Endometriosis Awareness Month, Chung once again used Instagram to share a message about endometriosis. She posted an image with facts about the illness from
All On The Board, a masked and mysterious pair of TFL workers who utilise the update boards in London’s tube stations to spread positive messages. Chung praised the duo for highlighting the cause, how many people are affected by it, and the gender bias experienced by many who seek treatment for it. She spoke from the heart in the post saying, “Sorry if you have it, thrilled if you don’t and grateful if you’re a supportive partner, friend of family member to someone suffering with this invisible hellmare.” She also opened up about her own treatment for endometriosis saying, “I’m lucky because I felt much better after surgery but I know that’s not the case for everyone and may not be the case forever. Sending love to those in pain and thanks to doctors trying to help.” Axelle/Bauer-Griffin/FilmMagic/Getty Images Modern Family star Sarah Hyland has dealt with serious health issues including dialysis, kidney transplants, and endometriosis. In 2018 the star told Self magazine in an interview that by her count she’d had 16 surgeries. She was only 28 years of age at the time. She has experienced not one but two kidney transplants, treatments for a hernia, and laparoscopic surgery to treat her endometriosis. “Laparoscopic [surgery is] one of the most painful things I’ve ever been through in my life,” she told Self.
Hyland spoke about the challenges people face and the sexist response from doctors when it comes to pelvic and menstrual conditions. "It affects so many [people], and so many [people] go undiagnosed and just think that they're having horrible cramps and they're being dramatic because that's what they're told," she says. Adding frustratedly, "a lot of doctors think that when you're in pain, you're not really in pain, that you're just being dramatic, that it's all happening in your head. I've been through that. I've dealt with doctors like that. Those doctors can go to hell."
Top Chef host and founder of the Endometriosis Foundation of America, Lakshmi has been very vocal about her struggle to be diagnosed and the anguish it caused her.
Speaking on stage at
Variety's Power Of Women event, she put into cold hard facts what the condition has cost her. "I was diagnosed at 36 after suffering every month since the age of 13 with so much heavy bleeding, cramps, nausea, backaches and digestive issues that I was stuck in bed one week out of every month when my period came. One week a month, three months a year for 23 years. That’s five years and nine months of my life that I was bedridden. Missing school dances, math quizzes, auditions, family milestones and wedding anniversaries."
She also went on to point out the glaring unfairness of how she has been treated by medical professionals in the U.S. That if she was a cis man that she would have been treated differently. "If I was a man and couldn’t get it up there would be many drugs, many treatments, pumps even… And it would be covered by insurance".
Lakshmi's campaigning for awareness surrounding endometriosis has made a huge difference for many people, including the next person on this list.
Dia Dipasupil/Getty Images Entertainment/Getty Images
Writer and producer Dunham has been very vocal about her struggles with endometriosis. In 2017, she made the decision to have a hysterectomy to try and treat the debilitating disease.
In true Dunham style, she was completely open about the procedure and
wrote a truly moving essay for Vogue about her experience. She also shared a photo of herself nine months after her operation on Instagram, explaining in the caption how she never expected to celebrate it in this way.
"I've never celebrated the 9 month anniversary of anything and I realized last night why that number feels so funny — I won’t ever do it the way I planned to. My body is mostly healed and every day I find a new bruise on my heart, but today I offer myself gratitude," she wrote.
Sam Wasson/Getty Images Entertainment/Getty Images
U.S. singer Halsey has shared her battle with endometriosis in such an open and brave way that
she was honoured with the Blossom Award (an award from the Endometriosis Foundation of America for those who have helped raise awareness of endometriosis).
She spoke about how
Lakshmi's support has helped her along the way. "I have had really amazing people like Padma, who have come to me, like, 'Hey, you need these heating pads, this tea, this medicine and you need to know when to say no,' and those little things have given me a lot of grace along the way."
She has also posted photos on her Instagram account of
her various treatments. Roy Rochlin/Getty Images Entertainment/Getty Images
Legendary comedian, host, actor, and all round boss Goldberg has spoken
openly about her endometriosis several times in the past. She's also a big supporter of the Endometriosis Foundation of America. In a speech at the charity's 2009 Blossom Ball, she said that she has been shocked over the years to realise how many people, including her own daughter, are unaware of endometriosis. So she has made endometriosis visibility one of her personal passions, advocating for those with the condition and even developing some marijuana based treatments for period pain. Mike Coppola/Getty Images Entertainment/Getty Images
Baby Spice herself has also been at the forefront of conversations around endometriosis. Diagnosed at 25, Bunton told
Elle magazine she was terrified by the information she received. "I remember the doctor saying at the time, 'Fifty per cent of [people] with endometriosis go on to have children'. I thought, only 50 per cent? It scared the life out of me". Mike Coppola/Getty Images Entertainment/Getty Images
was diagnosed with endometriosis aged 36, after struggling with the condition for 23 years. She did all this while maintaining an incredibly successful acting career. She has been involved with the Endometriosis Foundation of America and shared her anguish at how people with the condition are treated by medical professionals, on the organisation's website. "Years and years after suffering with this and thinking of myself as someone who was, I do not know, weak and someone hysterical. It seemed like my mom was the only one who actually believed me. I ended up harbouring a lot of resentment. I was extremely depressed, I was suicidal because I did not see an end to it," she wrote.
Stating that early detection and treatment is the best form of prevention, Sarandon emphasised that
signs must not be ignored. "Endometriosis is a war that patients fight every day. It is not normal for your daughter to be laying on the couch suffering saying she cannot go out of the house. Do not be afraid to ask questions. Do not suffer in silence." John Phillips/Getty Images Entertainment/Getty Images Star Wars: The Force Awakens actor Ridley has been open about her experience with the condition, with which she was diagnosed aged 15. Studies suggest endometriosis is exacerbated by stress, and back in 2015 when she was propelled into stratospheric stardom, Ridley's stress levels peaked. Speaking to Elle Australia she explained how debilitating her illness is. "I was in my flat going nuts, and then my skin got really bad with the stress of it all, and I hadn't been well—I had holes in my gut wall and stuff—and we were trying to figure out what to do with that because I'd felt poorly."