Improving Worklife for Sufferers of Endometriosis

"It wasn’t like we were reaching for the moon."

For many people with endometriosis, their lives complicated by recurrent and debilitating pain, the COVID-19 pandemic requirement that they work from home was a relief. It was the first time they had the chance to manage the condition in ways they couldn’t in the workplace, and still be productive in their jobs. 

Endometriosis is a condition in which tissue similar to that which is found in the uterus grows elsewhere in the body, causing extreme pain. There are an estimated 830,000 Australians living with the disease. 

But it shouldn’t have taken a global pandemic to bring such relief. Even small workplace changes and flexibility can make a world of difference to people with this chronic disease, says Associate Professor Mike Armour, from Western Sydney University’s NICM Health Research Institute.  

The Endo@Work initiative is a partnership between charity organisation Endometriosis Australia and researchers from NICM. The project also involves experts from the University of Technology Sydney, Southern Cross University, and the University of St Andrews, Scotland. Equipped with evidence gathered from reviews, surveys and focus groups, Endo@Work is developing recommendations for workplaces about how to better support people with endometriosis. 

The inspiration for Endo@Work came from a ​2019 study led by Armour into the economic cost of endometriosis and chronic pelvic pain in Australian women. The authors estimated that endometriosis was costing the Australian economy around $9.7 billion each year, more than 80% of which was due to lost productivity. "It’s also enormously costly for people with the disease", says Monica Forlano, chair of the board at Endometriosis Australia. 

"The average person living with endometriosis is spending about $30,000 a year managing the condition, so it’s huge," she says, pointing to the need for surgery and pain management medications and treatments. 

When the pandemic struck, the associated lockdowns provided a unique research opportunity that Donna Ciccia — director and co-founder of Endometriosis Australia, and a masters student at NICM Health Research Institute — was determined to seize. "I was sitting here thinking, 'Everyone’s working from home, what a great time to do this research into whether working from home is making it easier for patients with endometriosis'," says Ciccia.  

The team ran an online survey of the workplace experiences of 389 people with endometriosis during the pandemic. This revealed that most found it much easier to manage their symptoms and were more productive because of the flexibility in work hours. "The things that they wanted were so minor," Ciccia says, "It wasn’t like we were reaching for the moon." Something as small as access to a heat pack, a quiet room, or an ergonomic chair could make the difference between productivity and presenteeism.  

This lit the spark of an idea: simple, practical recommendations for workplaces, to help them support staff with endometriosis to achieve their full working potential.  

After a scoping review, and a series of focus groups, the Endo@Work guidelines have now reached the draft stage, and the characteristics of an endometriosis-friendly workplace are starting to become clear. 

"It would be an organisation that does that dual work of reducing the stigma — providing education around endometriosis — as well as offering flexible working arrangements," says Dani Howe, a PhD candidate at NICM Health Research Institute, who is working on developing and testing the guidelines as part of her PhD, under the supervision of Armour, Dr Michelle O’Shea, and Dr Sarah Duffy.    

Reducing stigma is a huge issue for people with endometriosis, who often shoulder the considerable burden of repeatedly explaining their disease to colleagues and who experience discrimination from people who view them as malingerers or not tough enough. "So much of it was the emotional labour of the person trying to be believed by their managers, and then gaining that trust to take the flexible working time, to take a split shift or figure out a time that works for them," Howe says.  

Armour sees an important role for workplaces to appoint endometriosis 'ambassadors' to help people with the disease manage their requests for flexibility. "They’re already fatigued, they’re in pain, and asking them to also educate their workplace is another burden on them," he says. Another change that could lighten the load is to reduce the requirements for medical certificates. "We know people with endometriosis often have about four days of sick leave each month," he says. An alternative might be to have a more flexible, standing doctor’s certificate arrangement, so people with endometriosis aren’t trying to get a GP appointment every month. 

The draft guidelines are now being reviewed across a variety of industries and workplaces in Australia, recognising that there can’t be a one-size-fits-all approach. "One of the biggest challenges is understanding how this applies across different industries," Howe says, pointing out that someone working in an emergency department will need different accommodations to someone working in an office environment. 

The hope is these guidelines will be available to the public and employers by 2025, and Forlano says they will be 'world-leading'. "There are so few researchers in endometriosis because of the lack of funding, and we’re fortunate that people like Mike are working on ​this."

You can find out more about the Endo@Work guidelines here.