The Health Issue Draining Billions from Australia

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For Rachel Eleanor Hosking, managing her endometriosis symptoms at work has been “dire”.

“There’s been multiple times where I’ve actually passed out at work and fainted because of immense pain,” she told SBS News.

On weekends, the 23-year-old PhD student works in retail, where she said standing up for eight hours at a time “infiltrates” her flare-ups.

She carries paracetamol and a TENS machine — a “discreet” device that delivers small electrical pulses for pain relief, but said they “don’t scratch the surface” against the debilitating symptoms.

“It can be really difficult for employers to understand the severity of the condition, especially when you’re so fatigued. And when you’re fatigued, you don’t really want to tell your male manager, who will say something like ‘Oh, what’s endometriosis?’,” Hosking said.

“And you’re like, ‘dude, I just want to lie in a ball right now, please look it up’.”

Hosking is one of an estimated one million Australians with endometriosis, a chronic condition where tissue similar to the uterus lining grows outside of the uterus, sometimes in the pelvis or in organs like the ovaries or fallopian tubes.

Each month, this tissue thickens and bleeds, which can cause chronic pain, inflammation, fertility issues, and other symptoms like fatigue, bloating and heavy bleeding.

The course, open to all businesses in the country, contains education for employers on endometriosis and how to better support staff.

A brown-haired girl poses from a hospital bed, holding the peace sign aloft and smiling.

Rachael Eleanor Hosking poses from a hospital bed on the day she received her endometriosis diagnosis. Living with endometriosis led her to pursue research in the same field. Credit: Supplied

Monica Forlano, chair of the board at Endometriosis Australia, said the program “signals to employees that these employers who are accredited [through the program] understand the condition, and it’s a safe place”.

“We know that 70 per cent of people with endo have to take unpaid time off because they’ve exhausted their personal leave, and people are losing their jobs because they can’t make ends meet, and a lot of people actually give up work altogether,” Forlano told SBS News.

Billions lost in productivity

Endometriosis affects one in seven Australian women, and a lack of awareness around the disease is costing the country billions each year.

A 2019 government study found endometriosis costs Australia between $7.4 billion and $9.7 billion per year, with roughly two-thirds of that figure attributed to lost productivity.

Forlano said the actual figures for the economic loss were likely to be significantly higher.

“That $9.7 billion was based on 2018 numbers and we know now that to the age of 49, one in seven women will have endometriosis, so we can only assume that figure is much greater,” she said.

Australian government contributions to research have led to a surge in awareness, but she said we are still far behind.

“We now know that there’s not just one type of endometriosis — there’s at least three, and in regards to understanding this condition, we are where breast cancer was 20-30 years ago,” she said.

The study further highlighted two key factors that contributed to productivity loss: ‘absenteeism’, where workers are forced to take leave to manage their symptoms at home, and ‘presenteeism’, where people may be present in the workforce but are unable to work to their full capacity due to their symptoms.

When 52-year-old Calli Brown started her career in media, managing her endometriosis symptoms at work was a “shameful” and stressful process.

“The stress compounded and it was so debilitating, there was a lot of shame, no-one really talked about periods and so there wasn’t an environment that was conducive to actually talk about what was going on for you,” she told SBS News.

Brown said she would need to take sick days off because of “excruciating” pain, which would often lead her to black out.

“But because you’re junior and you’re female, and it’s a busy environment, and everybody is supposed to be tough, and there are some women who don’t experience period pain, there were very few people I felt like I could turn to for support and for understanding,” she said.

“And so that was very shameful. I would have to take sick days, and at the beginning of your career, you don’t want to be having sick days all the time.”

Living with an ‘invisible’ illness

A survey of 389 workers with endometriosis conducted by Southern Cross University and Western Sydney University, which was supported by Endometriosis Australia, found one in six had lost their jobs to their diagnosis, while one in three said they had been passed over for promotions due to their condition.

Anna Fragkoudi, a research fellow at The University of Adelaide’s School of Public Health, said because endometriosis is an “invisible” disease, managers and superiors might not be understanding of the various methods people may need to manage their pain, such as taking sick leave or working from home.

“It is an invisible condition, so people might think, ‘Oh, you’re all right, so why would you like need to take leave if there is nothing wrong with you?’,” she told SBS News.

The survey found that flexible work arrangements introduced during the COVID-19 pandemic were the biggest contributor to increased productivity for people with endometriosis.

However, Forlano said the real challenge is being able to discuss the diagnosis at work and confronting the stigma.

“There’s a lot of anxiety and stigma raising your diagnosis, because you are seen as potentially unreliable and consistent,” she said.

“And that’s the experience that I had in my career, when managing the symptoms got so bad that I couldn’t function.

“Chronic pain brings up real mental health issues because it’s it’s exhausting, and with the fatigue that comes with that, it was really hard to take on high-stress roles.”

She said “some kind of empathy” from employers could go a long way.

“Some little things will make so much difference, commuting when you’re having an endo flare just makes symptoms worse so if you can log in at home from your bed, close to your bathroom that you can fill a hot water bottle whenever you need to, or even have a nap at in your lunch break just so you can perform and work — that’s huge for someone with with endo and they can thrive,” she said.

Brown said her experience navigating endometriosis in the workplace affected her mental health.

“You’re having to push it down, which then just compounds your symptoms, because you’re already really stressed. How can you improve your symptoms and get over something when you’re stressed and holding it inside? It just compounds the depression, it compounds the anxiety, it compounds the shame,” she said.

She said initiatives like the accreditation scheme were important because they established credibility towards a historically hidden and undermined disease.

“A lot of the time, women feel like it has to be a secret — to actually have a formal process means it’s a conversation opener, right? The world is changing, a lot of women are working in male dominated industries and this makes it safe for them to actually start the conversation in a way that is already legitimate.”

Brown said she was happy that her daughter, who has endometriosis, won’t have to go through what she did.

A photo of a smiling woman with brown hair wearing a black dress with her arm around a smiling teenage girl with blonde hair.

Calli Brown and her daughter are both diagnosed with endometriosis. Credit: Supplied

But Hosking, who now researches endometriosis at The University of Adelaide’s Robinson Research Institute, said when it came to endometriosis in Australia, awareness was still the “most important” step.

“It’s important not only for women to know so that they can know that their period pain is not normal, but knowing that men are also part of this conversation is something that is so important, because men make up [nearly] 50 per cent of the population, and if 50 per cent of the population do not understand the severity of what we are going through, then we’re stuck in this sort of rock and a hard place,” she said.

“It’s been too long that women have stayed silent, people with endometriosis have just suffered in silence, hid their period products, their TENS machines, their Panadol, they’ve said, ‘Oh, can I just pop to the restroom quickly?’. And then been denied that.”

She said awareness was the first step, and now it’s: “How can we help?”