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Endometriosis: Alexa Chung describes the condition as an “invisible hellmare” in powerful new Instagram post

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Lauren Geall
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Alexa Chung at London Fashion Week

As Endometriosis Awareness Month begins, Alexa Chung has shared a powerful message on the impact of the life-changing condition. Here, we highlight the well-known women who have shared their experiences.     

It’s no secret that when it comes to reporting pain - and getting medical professionals to listen - women often fare pretty badly. Research has proved this fact time and time again. Take the 2001 University of Maryland study, The Girl Who Cried Pain, which concluded that women are less likely than men to receive treatment for pain at all – particularly because we’re less likely to be taken seriously, and more likely to be dismissed as anxious or stressed, rather than suffering from physiological conditions.

So whether the symptoms are simply dismissed or explained away without proper tests and consideration, it won’t come as much of surprise that women who suffer from endometriosis (a condition which causes tissue that is similar to the lining of the womb to grow elsewhere in the body) often wait years to receive an official diagnosis – on average, it takes seven and a half years to be diagnosed with endometriosis, meaning many women are forced to wait much longer. 

As a condition, endometriosis is also affected by a lack of public awareness. According to new statistics from Endometriosis UK, 54% of people do not know what endometriosis is, despite being as common in women, and people assigned female at birth, as diabetes and asthma.

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“I’ve waited more than 10 years for an endometriosis diagnosis. Why?”

All of this contributes to the fact that so many women suffer with endometriosis in silence. Greater awareness of the condition not only puts pressure on medical professionals and official bodies to take a more urgent approach to diagnosis (recently, the government launched the first ever endometriosis inquiry to find out more about how the condition affects women in the UK), it empowers women to understand and recognise the symptoms of the condition in themselves and others.

And that’s why it’s so important to see celebrities speaking out about their experiences, as we saw recently in a powerful Instagram post from writer, fashion designer and presenter Alexa Chung.

Posting a photograph of a recent endometriosis-focused post from @allontheboard, which posts important messages on Tube information boards around London, Chung spoke honestly about having surgery to deal with her endometriosis.

“Why don’t they know what it is? Why don’t they know how to cure it? Could it be to do with a gender healthcare bias? Also probably doesn’t help that ‘endometriosis’ is the longest and most boring word to read,” the post begins. “Thank you to @allontheboard for raising awareness about this debilitating disease that affects one in 10 women and yet on average takes seven years to diagnose.”

Chung continues: “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. 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.”

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This isn’t the first time Chung has spoken out about dealing with endometriosis. In July last year, she again posted on Instagram to share her diagnosis with her followers.

Beneath a picture of her posing in the middle of a hospital hallway, Chung wrote, “I don’t want to belong to any club that would accept me as a member, but here I am,” adding the hashtags #endometriosisawareness and #endometriosisclub

Chung is just one of the celebrities who have used their platforms to raise awareness for the condition, which affects 1.5 million women in the UK alone. 

Actress Sarah Hyland has spoken openly in the past about her experiences with endometriosis - she previously underwent laproscopic surgery in order to remove endometriosis lesions.

And in an Instagram post, Hyland spoke about refusing to let her chronic pain stop her from achieving her fitness goals, admitting that she’d been “making excuses” because of her health issues (the Modern Family star also suffers from kidney dysplasia). 

“Lately I’ve been making excuses because of the constant pain from health issues. But no more,” she wrote. 

“A woman’s body is a miraculous thing and we can do anything we set our minds to.”

Girls star Lena Dunham and singer Halsey have also shared their journey’s with the gynaecological condition, with the former famously sharing her decision to get a hysterectomy in a powerful 2018 essay.

“I may have felt choiceless before, but I know I have choices now,” she wrote about her decision. 

“Sonograms and Instagram feeds don’t break my heart like they did when I still had a uterus that didn’t work. The children who could have been mine do break my heart, and I walk with them, with the lost possibility, a somber and wobbly walk as I regain my center.”

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What is endometriosis? A gynaecologist answers our most common questions

With one in ten women in the UK living with endometriosis, raising awareness about the condition and campaigning for more research (there is currently very little knowledge about what causes endometriosis and how to treat it), continues to be an important mission for sufferers across the country.

As gynaecologist Dr Anita Mitra previously explained for Stylist, “Endometriosis is the growth of endometrial-like tissue (the lining of the womb/uterus) outside of the uterus, within the pelvic cavity, on the ovaries, bowel, bladder and, in rare cases, on the liver and lungs.

“Although the tissue is not in its usual place it still responds to female hormones throughout the menstrual cycle; it thickens and then begins to fall away as it would during a period. However, it has no escape route, and causes irritation, inflammation and often excruciating pain.”

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