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;

Story

The culture of women and pain in Australia

by Sachi Kodagoda

Stories/500 , Issues/Women , Issues/Healthcare

Sydney NSW, Australia

28th May 2019

While it is more acceptable for women to show symptoms of pain, their pain self-reports are taken less seriously.

It was a friend who first diagnosed Ella with endometriosis when she was 16, simply with the words, 'Ella. You have endo." Ella had been experiencing terrible bloating, constant UTIs, pain while having sex and intensely painful periods. She didn't realise that this experience was out of the ordinary for a woman because she, like every other female, had been fed the narrative that periods are painful and sex will hurt the first few times.

She went to her GP on her friend's advice, laid out all her symptoms and offered her own thoughts on them: "I'm pretty sure I have endometriosis." Her concerns were dismissed and she was told by the doctor she first had to cancel out every single other possibility, such as food intolerances, before she could be sent to a specialist. The reasoning? That the only real cure for endometriosis in modern medicine was invasive keyhole surgery.

"Thinking back, it wasn't normal at all the extent of pain I was in..., I was just in pain all the time", she said. She explained how once she was in so much pain she could not move or even get herself out of her car and into her house. Once she managed to get into her apartment, she lay in bed with tears streaming down her face, hardly breathing. "It was just the worst pain I've ever had and I've had a ruptured appendix".

She went back to her GP and didn't budge this time. "I definitely have something wrong with me - and even if it's not endo, I need surgery". She was finally sent to a specialist and given the go ahead for the $8000 surgery. She was 21.

Ella's story raises a whole host of questions about endometriosis itself. Why is this condition so hard to diagnose, why does it take so long to diagnose, why is the only solution to it an extremely invasive surgery, and why is there such a lack of research into the condition? However, the biggest question in Ella's story - which sadly is not uncommon - is why are women not being believed about their pain?

Ella's experience came full circle when she herself offered her friend, Lihnida, an answer to her symptoms, which sounded remarkably close what Ella had gone through. 22-year-old Lihnida had been getting really bad stomach cramps, UTIs and bloating. "I can't even explain my bloat, it looked like I was pregnant and I couldn't even suck it in because it was so painful" she said of her experience. When Ella suggested she could have endometriosis, she was shocked. "I never thought I could relate one thing to all the symptoms I was having," she said.

Before she could even finish the sentence, "I think I have endo," Lihnida's GP had turned around and started printing a FODMAP guide. Lihnida was then advised to try FODMAP for a whole month and to return only if nothing changed, "A whole month more meant that I would be living with such an intense pain of something that was making me skip work, skip uni and affecting my day to day function", she said.

A research article published in the Journal of Pain, Research and Management, titled "Brave

Men and Emotional Women", examines the gendered norms about men and women inthe treatment of pain. It revealed a significant gendered bias in the way in which men are treated in regard to pain compared to the way women are regarded. There is a strange paradox in society where while it is more acceptable for women to show symptoms of pain, their pain reports are taken less seriously. Female pain is dismissed as being psychological or non-existent and therefore the treatment women are given is less than the treatment given to men for the same complaints of pain.

Lihnida was eventually referred to a specialist at St Georges hospital, where she was also operated on. Both Ella and Lihnida describe the surgery as intense and the recovery afterwards as incredibly painful. "You're so bloated, you have all these holes in your stomach and you have to wear this massive pad because you are bleeding so much," said Ella. Both girls also believe that they were extremely lucky that they had a close friend who helped initially diagnose them, because otherwise they believed they would still be suffering, not understanding what was happening to their bodies.

The culture of pain surrounding women in 2019 is inexcusable. Stereotypes and gender norms of "hysterical women" from the 1900's are present today in our society, and are more harmful in the context of health, ongoing pain and trauma. A study done in The New England Journal of Medicine found that women are seven times more likely to be discharged and misdiagnosed when having a heart attack than men, to the point of fatalities.

Health practitioners and medical researchers should take into account their own implicit assumptions about gendered stereotypes, as well as public health policy which acknowledges and encourages a closure of what the BBC call the "Health Gap", between men and women.

Ella and Lihnida should not have to consider themselves lucky.

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