Women With Endometriosis Want The Government To Do More Than Raise Awareness

The government allocated $5 million to an endometriosis school education program this week.

Endometriosis Budget

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The government set aside $5 million towards endometriosis in the federal budget this week, but women with the condition don’t believe the allocation stretches far enough.

Endometriosis is where tissue grows on the outside of the uterus and nearby organs, causing pelvic pain, inflammation, cysts, and impacts mental health and fertility. It affects 1 in 9 women and gender diverse folk, according to Endometriosis Australia.

“Endometriosis, until recently, has been largely unspoken of in public life in Australia,” Health Minister Greg Hunt said on Sunday. “But again, for an extraordinary number of Australian women, it can be a painful, agonising, debilitating condition.”

Contrary to the Department of Health’s budget breakdown, the $5 million allocated will go towards the continuation of the Pelvic Pain Foundation of Australia’s ‘Periods, Pain and Endometriosis Program’ otherwise known as ‘PPEP Talk’.

The funding is a continued commitment to the National Action Plan for Endometriosis released under the Turnbull government in 2018.

PPEP Talk is a school program that raises awareness for students, with the goal of earlier diagnosis and treatment option education. It started in South Australia two years ago before expanding to Western Australia in 2020. With the new funding, they hope to expand nationwide.

24-year-old Ella Beer told Junkee that PPEP Talk is a comforting investment for the government to back, given the shoddy reproductive education available at the moment.

“An endometriosis awareness program for school students will, if nothing else, work wonders in shortening the average diagnosis time for endo sufferers — which is roughly seven years.”

PPEP Talk will help “by instilling awareness for the disease from a young age and empowering young people to see answers for their symptoms sooner,” she said.

At the same, some people living with endometriosis believe the motivations behind the government’s funding are more to do with saving face than helping people out.

“I think [PPEP Talk] was named in this year’s budget to win the hearts of women,” Anna Groth, a registered nurse who works with adolescents, and also has endometriosis, said to Junkee. “This is a transparent act.”

Endometriosis costs the country $9.7 billion per year. At a personal level, people with endo fork out tens of thousands of dollars to diagnose and treat their condition, and are left wondering if more could’ve been allocated for better support and financial alleviation.

“Having a GP care plan that allows me to visit dieticians, pelvic floor physiotherapists, psychologists, gynaecologists and more, has certainly helped me learn how to manage my disease, but it’s no cure and it’s stupidly expensive,” Beer said.

She was diagnosed early last year and says the lack of targeted initiatives or programs tailored to people with endometriosis at a federal-level is telling.

“I have a lot of anxiety about the ongoing nature of a currently incurable illness, and I do wish there was more I could do for myself.”

“We are very happy that a disease that no one talked about and is often shrouded in taboo is garnering attention and attracting some funding, but there is still so much more to be done,” CEO, director, and co-founder of Endometriosis Australia, Donna Ciccia said to Junkee.

“If we could have one wish for what we would like to see for endometriosis, it is more funding for research. There is more we don’t know about endometriosis than what we do know,” Ciccia says.

“Awareness is great, it’s what helps people get diagnosed, but what do you do with a diagnosis without effective treatment options?” Beer agrees.

Additionally, Groth says mass education for medical students and men, are as vital as school programs for stopping misinformation around endometriosis.

“This disease requires a public health campaign. Who else is out there losing working hours, fertility and quality of life?”

The endo budget is part of a $21.6 million commitment for women’s maternal, sexual and reproductive health initiatives announced by minister Hunt on Mother’s Day. The remaining $16.6 million will go towards the Jean Hailes Foundation for Women’s Health.

This pool is within an even wider $353.9 million for general women’s and mothers’ health over the next four years.

“We think 830,000 Australian women and those that identify as gender diverse, need answers, need hope and more importantly need a cure,” Ciccia says.

“Endometriosis is a complex and debilitating disease and it needs serious investment from all sectors if we are going to achieve change.”