Endometriosis can end women's careers and stall their education. That's everyone's business

The Coalition has announced a A$58 million funding package to improve endometriosis diagnosis, care and treatment.

This would see new specialised endometriosis and pelvic pain clinics set up in each state and territory, expanded Medicare-funded medical imaging for the condition, and support for women who manage endometriosis with their GP, among other measures.

This announcement would benefit the estimated one in nine Australian women with endometriosis.

However, endometriosis is not just a medical issue. Our recently published research shows there’s a high chance that women surgically diagnosed with endometriosis will leave the workforce.

Read more: Considering surgery for endometriosis? Here's what you need to know

Remind me, what is endometriosis?

Endometriosis causes inflammation when tissue similar to the lining of the womb grows throughout the body.

Women often describe “stabbing” pain during their period, back pain, and pain going to the toilet and during sex.

They might have stomach pain, vomiting and diarrhoea, headaches, muscle aches and tiredness. Imagine dealing with this every day or not knowing when symptoms might strike.

Endometriosis is estimated to cost A$9.7 billion each year to the Australian economy. Most of these costs come from lost productivity at work.

Read more: Endometriosis costs women and society $30,000 a year for every sufferer

How do women with endometriosis struggle at work?

Focusing at work can be difficult because of unpredictable symptoms, side effects of strong painkillers, and frequent trips to the toilet.

Women seeking a diagnosis of endometriosis through surgery need time off to recover and might find themselves having more surgeries in the future.

Trying to explain this to people at work and employers can be embarrassing, feel like an invasion of privacy or may unfairly risk future career opportunities.

Sick leave can disappear quickly, and women may feel pressured to work while unwell.

Emma Watkins, the former Yellow Wiggle, went public with her battle to balance endometriosis and work. Ongoing pain and the need for surgery to treat it forced Emma to pull out of the 2018 Wiggles national tour.

It can take years to be diagnosed

Many women with endometriosis start to see symptoms as adolescents or young adults. However, many women aren’t officially diagnosed until their early thirties. It takes an average of eight years to be diagnosed.

Stories of women fighting hard to get a diagnosis because doctors wouldn’t believe them, or take their symptoms seriously, are common.

To make matters worse, until recently, the only way to tell if someone had endometriosis was to do surgery.

Surgery isn’t the right option for everyone; it has risks, is costly, requires time to recover, and doesn’t always stop women’s pain. Many cannot have, or do not want, surgery and are labelled with “suspected” endometriosis.

Fortunately, international guidelines updated earlier this year say endometriosis can be diagnosed without needing surgery.

Diagnosis is a turning point

A diagnosis of endometriosis was a turning point for women’s participation in work, our research showed.

We used data from the Australian Longitudinal Study on Women’s Health to look at employment for 4,494 Australian women born in 1973-78, with and without endometriosis.

We found 63% of women who had surgery for endometriosis were working full-time before diagnosis. This dropped to 44% after diagnosis.

Women who had surgery for endometriosis were 85% more likely to be unemployed three years after their diagnosis than before it.

Women who had “suspected endometriosis” (diagnosed without surgery) stayed working but were more likely to suffer from severe period pain, tiredness, heavy periods, and headaches or migraines than women without endometriosis.

Women who had surgery for endometriosis may have been in a better financial position to afford to get surgery and to eventually stop working than women who didn’t have surgery.

But we cannot underestimate the emotional and physical challenges of living with endometriosis. The often limited support available in the workplace means women may have been forced to stop work.

How can we support women to stay in work?

The 2018 National Action Plan for Endometriosis attempts to educate employers about supporting women with endometriosis at work.

This includes offering flexibility in the workplace – whether that’s through job modifications and time off in lieu, or flexible work hours and working from home.

Creating a supportive workplace culture is also important. Non-judgemental responses to women’s experiences with endometriosis are also key.

Read more: Women with endometriosis need support, not judgement

Additional days of sick leave for women with endometriosis may also help to manage the demands of their job and symptoms.

These are great starts for women already in work, but we need to do more, and start earlier.

Girls and women need flexibility early in their education to cope with the unpredictable nature of endometriosis.

Virtual classrooms could help minimise missed days at school, TAFE or university. Programs that offer flexibility and allow women to complete their education over a longer period could help.

More funding will be needed

The recent funding announcement for people with endometriosis includes A$2 million with a portion to fund a workplace assistance program. This is for employees and employers to navigate discussions in the workplace.

The detail of how that will work is not yet available, although this just a starting point. More funding will be needed to address the inequity for women with endometriosis in the workplace, to support women to stay working for as long as they want.

Women with ‘suspected’ endometriosis also need support

Finally, we mustn’t invalidate women’s experiences of endometriosis, and the severity of their symptoms, based on their type of diagnosis.

Policymakers, doctors and employers should acknowledge women with “suspected” endometriosis need just as much support as those with surgically diagnosed endometriosis.