Staring down the barrel of pain and debt: endometriosis' untold cost

What is endometriosis?

One in 10 women have the painful disease and although there is no cure, there are treatment options.

Twenty thousand dollars. That's how much endometriosis will cost Jessica Duncan in one year.

There are $2700 in surgeons' fees, $3500 in hospital admissions and doctors' consultations, $4500 for a laparoscopy, $5000 for medication, $1600 in fuel for the eight 1260 kilometre round trips between Moree and Sydney, $2500 for accommodation, meals and other transport as well as the bills for pathology tests and allied health services.

It has also cost her a medical degree, her ability to function without debilitating pain or a wheelchair for months at a time, up to $8000 in credit card debt and untold mental anguish.

Jessica Duncan, 23, travels from Moree to Sydney eight times a year for endometriosis treatment.
Jessica Duncan, 23, travels from Moree to Sydney eight times a year for endometriosis treatment.  Photo: Supplied

"Staring down the barrel at the cost is very stressful when you're in so much pain you're desperate for treatment," the 23-year-old said.

"It's led me to some very bad places physically, mentally and emotionally. You just have to come up with the money."

Endometriosis is a condition where tissue that normally lines the womb grows outside the uterus, causing inflammation and debilitating pain. Symptoms include nausea, painful periods and reduced fertility.

Endometriosis exacted $7.4 billion from the Australian economy last year according to the most comprehensive financial analysis of the confounding condition.

"The figures are extraordinarily high," said Sylvia Freedman, co-founder of EndoActive, which commissioned the Ernst and Young report released on Wednesday.

But even more glaring than the billions accounted for are the great slabs of missing data that obscure the true burden of the under-recognised and under-researched disease.

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"There are huge costs not included in the report because Australia hasn't been collecting this information on women with endometriosis," Ms Freedman said.

Up to one in 10 Australian women will develop endometriosis, amounting to roughly 620,000 women now living with the condition.

The decline in their quality of life drained more than $4 billion from the national economy alone, the report said.

Endometriosis patient Hayley Townsend with her son Zach, 3 months, and daughter Chelsea, 3.
Endometriosis patient Hayley Townsend with her son Zach, 3 months, and daughter Chelsea, 3.  Photo: Wolter Peeters

Productivity losses due to absenteeism and presenteeism cost $2.6 billion. Direct healthcare costs amounted to $506 million, including $444 million for surgery.

The transportation cost to patients in rural and regional areas travelling to cities for treatment totalled $75 million last year for 4.4 million hours in transit.

The analysts faced a scarcity of robust Australian research into endometriosis, "yet the available data strongly suggests that [endometriosis] adds a significant 'silent' burden to the nation's budget", they wrote.

There's the hidden cost of delays in diagnosis (on average seven to 12 years) as women fork out thousands for specialist consultations, imaging scans and ineffective treatment, Ms Freedman said.

The high rates of chronic conditions among endometriosis patients (including infertility and depression) exacerbated the overall financial burden on individuals and the economy.

For instance, Ms Duncan has fibromyalgia and migraine as well as endometriosis.

The financial burden of carers' leave and the cost of medications are also unknown, and the stigma of the "women's issue" is also a confounder.

"Sometimes it's easier to say you're sick with the flu," Ms Freedman said.

Hayley Townsend wishes she had never told her employers she had endometriosis.

The condition has cost her roughly $29,000 for operations, specialist fees and medication since she was diagnosed at 17.

It has also robbed her of her ability to work. Two years ago, Ms Townsend had little choice but to leave her role as a receptionist at a club, where she spent her entire shift standing.

"I have always been upfront about my endometriosis and I would push through the pain if I couldn't find someone to replace me, because I needed the job," she said.

Even though her managers acknowledged she was a good worker, they deemed her "too unreliable", Ms Townsend said.

"They told me I needed to figure something out if I wanted to keep my job.

"I want to be able to give my kids the best life I can ... and I don't want my husband to have to carry that financial stress alone."

Ms Freedman said the report clearly demonstrated the need for a concerted national effort to collect better data to inform the federal government's $4.5 million National Action Plan for Endometriosis.

The government has also committed $10 million to endometriosis awareness and research into prevention, early detection and treatment.

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