Invisible disease costing one in six women like Sarah their jobs

Welcome to 9Honey’s series ‘More than pain’, which is shining a light on the lesser-known challenges that come with endometriosis, a debilitating disease that affects one in seven Australian women and people assigned female at birth.
In this feature, 9honey speaks with three Endometriosis Australia ambassadors about the crippling financial impact of managing endometriosis in a cost of living crisis.
Australian women already earn an average of $12,376 less than men every year (February 2024 ABS), and those with endometriosis forfeit a staggering $25,800 more in lost productivity over their lifetimes.
But it’s not just their bodies and bank accounts that are suffering – their careers are too.
About one million Aussies born with female reproductive organs live with endometriosis and are forced to choose, some on a daily basis, between their health and their livelihoods.
Endometriosis Australia research shows one in six will lose their employment due to managing their endometriosis, and a few years ago ambassador Sarah Maree Cameron feared she’d be one of them.
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“I had heard whispers in the industry that I was becoming known as a problematic person because of my endometriosis,” she tells 9honey of a former employer, which she chose not to name.
Cameron was diagnosed in her 20s and suffered heavy periods, debilitating pain and fatigue, among other symptoms that often made it hard to work her radio job. Bosses noticed.
So when she felt an ovarian cyst burst inside her one Sunday, Cameron didn’t go to hospital, and when she woke up in agony on Monday, she still went to work.
“I was too scared to say anything because I had almost used up all of my sick days,” she admits.
A few hours into her shift, a friend turned up at the studio. They’d heard Cameron’s voice on the airwaves and knew something was wrong. They urged her to get medical care.
About an hour later, Cameron was admitted to hospital for sepsis.
Without treatment she could have suffered tissue damage, organ failure, or even died, but like many endometriosis patients, Cameron was scared to take time off for medical care because of how her former employer might have reacted.
Now she’s at a more supportive workplace and has the freedom to put her health first, but that’s the exception – not the rule.
Seven in 10 sufferers end up having to take unpaid time off to manage endometriosis symptoms after burning through their sick days, affecting both their income and their career progression.
Endometriosis Australia’s research shows one in three will be overlooked for a promotion because they have to manage the disease, while others have to completely overhaul their careers just to find a job that allows them to manage their symptoms.
Ambassador Deanna Flynn Wallis, who was diagnosed at 19, had to give up working in education altogether because of the debilitating physical and mental symptoms of her endometriosis.
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“You’re trying to look after 60 kids at a time, and all they want to do is run and play and have fun with you, but I couldn’t even walk,” she tells 9honey.
“Having to step away from education broke my heart, but I knew my body couldn’t do it anymore.”
Neither could her heart.
Like so many with endometriosis, she struggled with infertility and suffered a miscarriage before spending $30,000 on IVF, which resulted in another devastating pregnancy loss.
“Working with children who would have been the same age as my first child was also really challenging,” she admits.
“Seeing all those children achieve milestones, and [thinking] ‘this could have been my child right now’. That took a mental toll.”
Flynn Wallis took a more flexible role in her family’s business, a rare opportunity few endometriosis sufferers get, but it’s not always perfect.
Work-related stress can cause endometriosis symptoms to flare up and Flynn Wallis is constantly in and out of hospital, with limited time to recover before returning to work after each admission.
Some patients even work through hospital admissions, like Endometriosis Australia ambassador Ellie Angel-Minns.
“It’s a bit of a joke here in my office that unless Ellie is in hospital, she will be here at work. I actually have Zoomed in to a meeting before from the emergency department,” she tells 9honey.
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Though Angel-Mobbs’ workplace of the last 18 years has been hugely supportive of her health needs, juggling endometriosis with full time work is taxing and involves many difficult conversations.
A recent survey from Hello Period found that 80 per cent of people feel anxious about having their period at work, 77 per cent have lied to their manager about why they’re taking a sick day when it was for their period, and over half feel uncomfortable discussing periods with colleagues – and that’s just for regular periods.
“You may struggle to speak up at that time because you just simply don’t have the confidence. That was a major factor for me,” Cameron says. 
Broaching the topic of endometriosis with employers can be fraught and while new reproductive health leave entitlements and work from home protocols are a step in the right direction, not all employers are on board.
WATCH: Union calls for better reproductive leave entitlements
“Because endo is an invisible illness, people always think you’re not sick,” Angel-Mobbs explains, adding that employers have a duty to believe their employees with endometriosis.
Employers can better support workers with endometriosis by taking part in initiatives like Endometriosis Australia’s Workplace Accreditation Program (EndoAware), understanding the disease, and supporting employees’ health needs.
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