‘I get sick quite quickly, quite often, and quite badly’

Endometriosis is now considered more common than diabetes or asthma, according to Endo Help Australia CEO Kat Stanley. 

Endometriosis is commonly misdiagnosed as period pelvic pain Photo: Natasha Hortis

“The most recent data shows that one in seven women have endometriosis,” Stanley told Dscribe.  

Historically under-recognised, endometriosis is a chronic disease that can affect every aspect of a woman’s life and can lead to reduced participation at work, school and social activities.  

Common misconceptions about endometriosis have led to delayed diagnoses among many young Australian women.  

“Because of the stigma wrapped around it, there’s a diagnosis delay of up to four to six years” Stanley said. 

A recent survey conducted by the Victorian state Labor Government concluded that half of all women are impacted by issues related to periods, pregnancy or conditions such as endometriosis. The study found that one in three said they’d experienced insensitive or disrespectful medical practitioners, who left them feeling dismissed and unheard.  

Endo Help Australia is an organisation that aims to educate and empower, in order to bring awareness to the issues surrounding endometriosis.  

The Federal Government’s 2024 Endometriosis Progress Report outlines the Endometriosis Support Budget within the health sector. The findings of that report detail that $17.4 million is being used to open 22 specialised Endometriosis and Pelvic Pain GP clinics, in order to focus on offering treatment and improving the delay of diagnosis within the women’s health sector.  

The report highlights the Federal Government’s national action plan for endometriosis up to 2026.  

According to the Australian Institute of Health and Welfare summary report , women with the disorder each spent an average of $30,900 on costs in 2017.  

In 2024, these expenses have not improved, and continue to put a financial burden on endometriosis sufferers.  

 “It costs the Australian economy $7.4 billion a year,” Stanley said.  

One of the largest non-government researchers of the chronic condition, Endometriosis Australia suggests one million Australians live with endometriosis.  

Twenty-three year old Miora Trainor is one of the many Australians living with the condition.  

She was diagnosed with Endometriosis when she was 21, two years after first seeking help from health professionals. 

“I was very lucky, in getting my diagnosis. I was taken pretty seriously from the get-go, which I know is not the experience of the majority of people with endometriosis” she said. 

 Trainor described her experience living with the chronic condition. 

“Waking up some mornings having extreme cramps or nausea or headaches, my immune system is a lot weaker as well because it fights the growth of the endometriosis” she said. 

“I get sick quite quickly and quite often as well, and quite badly, which also in the long run affects my everyday life.”

The Women’s Pain Enquiry aims to ask Victorian women and girls to share their personal experiences with pain. The enquiry’s objective is to help identify how to improve treatment and services for pain conditions, such as endometriosis.   

 Victorians can participate by making a submission before July 31.


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