This week my rechargeable heat pack, otherwise known as my trusty sidekick, broke. I Immediately rushed out to purchase a new one. I’m in lockdown at the moment and thankfully a chemist within my local government area stocks this very much essential item. While I was waiting at the chemist to pay, I started thinking about all the money I’ve spent on endo and managing this insidious disease since my diagnosis. The sums are not pretty, and the cost of endometriosis is a real stressor.

Estimated cost of endometriosis

A report released in 2019 estimated that endometriosis costs Australian society $9.7 billion annually. Two-thirds of those costs are attributed to a loss in productivity with the remainder, approximately $2.5 billion, attributed to direct healthcare costs. (1)

Those figures are hard to compute, and while my heat pack was not anywhere in the realm of billions of dollars, or even hundreds of dollars, the money that I spend on endo really does add up.

Since my diagnosis I’ve been a regular at my GP and various other specialists. This is not cheap. My specialist appointments costs anywhere between $200 – 400 per appointment, and my GP doesn’t bulk bill, so I end up paying around $40- 60 out of pocket each time.

At the peak of my illness, I reached my Medicare Safety Net threshold in a matter of months. This is a threshold for out of pocket expenses on certain medical procedures and items that you can claim Australian Medicare benefits for. Once you reach the threshold you start to receive more money back when you make a Medicare claim (2). While the additional money back was appreciated, I was still spending money like there was no tomorrow.

As the 2019 report indicated, one of my main endo costs has from a loss of productivity. Due to the severity of my disease, and frequency of my surgeries, I was forced to take over a year off work to recover. That’s a fair bit of lost income. And even now, I’ve accepted a lower paying job than I perhaps otherwise would have, preferencing a work from home flexible arrangement so I am able to manage my health.

Other costs associated with my endo include:

• Internal Ultrasounds
• X-rays
• Pain and anti-nausea medications
• Vitamins
• Acupuncture
• Blood Tests and pathology costs
• Iron Infusions
• Tens machine
• Private Health insurance

I’ve also had three surgeries. Each of these alone has cost thousands of dollars in out of pocket expenses. I chose to go private, and make use of my health insurance which in itself is not cheap.

I’ve calculated that I typically spend around $300-400 per month on endo. This figure includes a portion of my private health cover, medications, doctor and specialist appoints, and other endo related tests and treatments. This figure varies month to month and dramatically increases when factoring in the costs associated with surgery.

Recently I’ve had to review my costs and pair back a little. I stopped acupuncture even though I was finding it helpful, and spoke with my GP about providing me with more repeats on my scripts so I could avoid having to pay for appointments just for re-fills. But some expenses, like the medications themselves, the tests and treatments cannot be helped.

The financial burden of endo can be pretty stressful. For some, just getting diagnosed can cost upward of $5000 dollars in medical and hospital fees. Taken together with the fact that it takes between 7-12 years to diagnose endo in most cases (3), the costs that a person with endo has endured in medical appointments prior to their diagnosis, loss of work from illness, medical emergencies and hospital stays all needs to be factored in.

I’ve been immensely privileged to be able to afford specialist treatments, pay for private health insurance, take time off from work, and have a partner and family that support while doing so. But despite all of this, I was still often stressed about how I was going to afford it all.

I often worry too about the future and my ability to sustain my health, it’s not a cheap exercise by any means.

With 200 million people worldwide diagnosed with this disease, and 830,00 in Australia (4), I think it’s time that we push for better treatments and importantly faster diagnosis. The faster endo can be diagnosed and treated, the less financial burden for the individual and for the entire country – surely that’s something to work towards?

In the meantime – I hope you are keeping well. If you are stressed about how much your health is costing you at the moment, I feel you, I see you, and I sincerely hope that you can find the support and resources you need.

Sending love

Rach

XX

Resources

1. Armour M, Lawson K, Wood A, Smith CA, Abbott J. The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: A national online survey. PLoS One. 2019 Oct 10;14(10):e0223316. doi: 10.1371/journal.pone.0223316. PMID: 31600241; PMCID: PMC6786587. Accessed online https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0223316

2. Medicare Safety Nets, What are the thresholds, Australian Government, Services Australia, accessed online https://www.servicesaustralia.gov.au/individuals/services/medicare/medicare-safety-nets/what-are-thresholds

3. EndoFacts, Endometriosis Australia, https://endometriosisaustralia.org/research

4. EndoFacts, Endometriosis Australia, https://endometriosisaustralia.org/research

Photography provided by Cole Bennets

Written by,
Rachel Burke

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