Health 'People have never heard of the word': Plan to tackle endometriosis

04:01  14 may  2018
04:01  14 may  2018 Source:   canberratimes.com.au

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' People have never heard of the word ': Plan to tackle endometriosis Around one in 10 women suffer endometriosis . Photo: StocksyThe draft report comprises

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The Federal Government has vowed to lift the lid on the “silent epidemic” of endometriosis, detailing its plan to educate doctors, teachers and employers about the painful condition affecting 700,000 Australian women.

On Monday Health Minister Greg Hunt will release the draft National Action Plan for Endometriosis and call for public input, saying he was “determined to do more to support sufferers and encourage people to have their say”.

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For sufferers, such as Tara Smith from Revesby, the development was a “relief” and deeply encouraging.

Tara Smith, 22, suffers from endometriosis, a little understood disorder. © James Brickwood Tara Smith, 22, suffers from endometriosis, a little understood disorder. “Some days it's like an intense period pain, but when it's bad, it's like someone's wrapped up all my abdominal organs in barbed wire and are pulling on it tightly,” the 22-year-old said.

“There’s a lot of education that needs to be done, but I’m grateful they’re working hard to tackle the issue because so many people have never even heard of the word.”

The draft report comprises three priority areas: awareness and education, clinical management, and care and research. The cause of the disease remains unclear and there is no known cure.

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Described by experts as a “silent epidemic”, endometriosis is a condition where cells similar to those that line a woman’s uterus grow in other parts of the body, causing debilitating pain.

The report acknowledges endometriosis has been historically under-recognised among doctors as well as the public and consequently under-diagnosed. It can take as long as 12 years to receive a diagnosis.

“Some research indicates the condition is more common than breast cancer, prostate cancer, and diabetes,” the report says.

“It can affect all women and girls, regardless of age, background or lifestyle.”

Federal Health Minister Greg Hunt issued an apology last year for the decades of inaction on endometriosis. © AAP Federal Health Minister Greg Hunt issued an apology last year for the decades of inaction on endometriosis. It quotes sufferers, with a woman named Anna saying she had “been told everything from it being a digestive issue to [being caused by] gluten”.

A woman named Laura revealed that at a hospital “the doctor said ‘How do you spell that?’ and I remember lying there thinking, ‘What am I doing here? He doesn’t even know how to spell it'.”

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The report recognises that “endometriosis costs billions in healthcare, absenteeism and lost social costs and economic participation”.

Sufferers have told Fairfax Media they feel they have to hide their pain at work to avoid looking weak. One woman pushed herself so far that she fainted.

The draft plan says workplace-specific materials should be developed to educate employers on the prevalence and impact of the disease and enable them to support affected staff.

In the education sphere, it says secondary school puberty and sexual health curriculums should be updated to teach students about the symptoms of endometriosis and related conditions such as adenomyosis.

Overall, it says, endometriosis’ visibility in public life should be improved to “ensure that endometriosis (‘endo’) enters the public vernacular”.

In the medical community, it says simple and standardised tools should be developed for doctors to more easily diagnose patients and devise an action plan.

It also says basic data should start being captured – through “apps, image capture and processing, computer-based questionnaires, record linkages, central databases, etc”.

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Around one in 10 women suffer endometriosis. © Stocksy Around one in 10 women suffer endometriosis. Donna Ciccia, chief executive of Endometriosis Australia, said progress in the past year has been “phenomenal” and encouraged anyone affected by the disease to give feedback through the public consultation process.

“We’re paving the way, the next generation doesn’t have to go at it alone. Before, only a handful of women talked about it, but now with social media and online, we have a bigger voice," she said.

“Internationally, this is groundbreaking. I know in America, they’re really looking at us in shining the light on the subject."

The draft plan was developed with endometriosis researchers, clinicians and patient advocates earlier this year and has the backing of all state and territory health ministers.

Last year, a bipartisan group of federal MPs, including Gai Brodtmann and Nicolle Flint, created the Parliamentary Friends for Endometriosis Awareness Group.

Last December, Mr Hunt issued a formal apology to sufferers, saying the “condition should have been acknowledged at an earlier time in a more powerful way."

Ms Smith said: “I think many women have suffered in silence for too long and I am very excited for the developments to come.”

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