'No financial safety net': The crippling cost of endometriosis

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It feels a little strange to be writing for Money when I have so little of it.

At 38 years of age I have no investments - no house, car, shares, or stocks and very little superannuation.

My annual income averages out to approximately $45,000. The few thousand dollars I have in savings is always stored and calculated carefully and I am never not on a budget. There is a very clear reason why I'm in this financial position: endometriosis and the resulting chronic pelvic pain that has left me disabled.

the cost of endometriosis
A study published in PLOS ONE found that the average cost to those diagnosed with endometriosis is close to $30,000 per annum. Photo: Getty Images.

While the physical symptoms of endometriosis are becoming more widely known - and, thankfully, are starting to be diagnosed earlier - what is less commonly discussed is the economic impact the condition carries.

Endometriosis - a chronic pain condition that can cause infertility and organ dysfunction - causes tissue similar to the uterine lining to grow outside of the uterus.

According to Endometriosis Australia, it affects more than 830,000 Australian people assigned female at birth during their lifetime (approximately 11% of the population).

Endometriosis Australia quotes an Australian government study showing endometriosis costs Australia $9.7 billion per year - $2.5 billion coming from direct healthcare costs, the remaining assigned to loss of productivity.

At the personal level, a study published in PLOS ONE found that the average cost to those diagnosed is close to $30,000 per annum. It's a figure that doesn't surprise me given I'm affected by both the direct and indirect costs of the condition every day.

Prior to a rapid decline in my health in 2017, I was working full-time in a high-stress job.

My annual income was $65,000 with pathways to grow my role both in scope and pay. I was incredibly fortunate to have a sympathetic employer who paid out my contracted entitlements (both sick leave and annual leave) so that I could remain financially afloat while I recovered from a stint in hospital, and then redesigned my role so that I was able to return to work part-time.

Four years later, I now work in a freelance capacity.

This allows me to work from home, which is not only easier on my body but also helps to protect my compromised immune system. With this decision, however, means a relinquishing of key protections such as sick leave. If the work dries up or if I fail to get government grants for certain projects, I am immediately vulnerable to sliding into poverty and homelessness.

For many of us not yet eligible for the Disability Support Pension, the JobSeeker payment is a system of income protection that highly disadvantages disabled and chronically ill people who are unable to complete or maintain many roles due to reduced capacity. The stress of this precariousness sits with me on a daily basis and contributes to the mental costs of living with disability and chronic illness.

Then there are the direct health costs. I need to see a GP who specialises in women's health, so I'm unable to access doctors who bulk bill. The gap in standard appointments is $41.05; for longer appointments it is $68.95. I see her roughly every six weeks.

I see a specialised psychologist who is trained in health and pain management, as well as trauma. This is a key combination of skills that is essential to my ongoing health and welfare. I can only see her as a private patient, so each appointment covered by Medicare's mental health care plan carries a gap of $120.

The impact of COVID-19 has seen the number of sessions the rebate covers increase from 10 to 20 per year, but given I see her on average once a fortnight I still have appointments where I pay the full rate of $200.

Costs that are incurred with less regularity yet are still essential include appointments with my gynaecologist (the gap ranging from $93.45 to $192.25), pelvic ultrasounds (a gap of $249) and pain medications -the cost and rebate of pain medications vary greatly and not all fit within the PBS.

Finally, a key cost that is non-negotiable for many with endometriosis is private health insurance. My policy carries a gap of $150.18 per month. Despite my low income this is something that I must prioritise - without it I face lengthy wait times in public hospitals due to surgery for endometriosis deemed to be elective.

Increasingly, more patients are being forced to "self-insure" by paying the full cost of the surgery (after Medicare rebates) to avoid the current wait times, which, anecdotally, range from six months to three years.

Medibank quotes a laparoscopy as costing from $5546, which, even with private health cover, requires $785 from the patient (combining the excess with the out-of-pocket cost) and does not include the cost of the anaesthetists. This also does not take into account more complex cases or complications.

The economic costs of endometriosis are of course only one facet of the disease - there are also the social and mental costs that I value more than the missed professional development opportunities and promotions.

But most of all endometriosis has taken away any chance I have of a financial safety net - and that is the cost I fear most.

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Kylie Maslen is a writer and critic living on country stolen from the Kaurna people of the Adelaide plains. Her first book - Show Me Where It Hurts: Living With Invisible Illness - was shortlisted for the 2021 Victorian Premier's Literary Awards in non-fiction, named in Guardian Australia's '20 best Australian books of 2020', named a Saturday Paper's 'Best new talent of 2020' and included in bookseller Readings' 'Most talked about books of 2020'. It has received praise in reviews by Australian Book Review, Books+Publishing, Sydney Review of Books, The Sydney Morning Herald and Meanjin, among others. Her website is kyliemaslen.com.