The cost of an endometriosis diagnosis

Georgia Brown has been living with debilitating pain since she was 15.

Now 27, sometimes it's so bad she won't even lie in bed as the feeling of sheets on her skin makes her feel sick.

"Sometimes I just have to lie on the bathroom tiles until the pain passes," the Melburnian says.

Prescription painkillers help her "sleep it off". With milder episodes, she uses a TENS machine and hot water bottle.

"Having an answer as to why my periods are like this would make everything easier for me mentally, and so I know what to do moving forward in terms of treatment, medication and how to manage this for the rest of my life," she says.

Endometriosis Australia CEO Alexis Wolfe says the significant cost of seeking an "official" diagnosis is a barrier for many women and gender-diverse patients.

"A laparoscopy across both private and public systems can be anywhere between $2,000 and $15,000," she says.

"And not only in financial cost, but opportunity cost. So many individuals may need to take time off work, education, arrange other care for parenting responsibilities."

Advancements in diagnosis

Endometriosis diagnosis during a laparoscopy (key-hole surgery) involves a surgeon identifying abnormal tissue and removing a sample.

That sample is sent to a lab, where a pathologist would provide confirmation of the disease, explains Mike Armour, associate professor in reproductive health at Western Sydney University.

Laparoscopic surgery also treats the disease by removing scarring and lesions, but there is about a 35 per cent chance it will recur.

In recent years there has been a move towards clinical diagnosis.

Dr Armour says the improvement of imaging techniques such as transvaginal ultrasound scans (TVUSS) can reliably diagnose endometriosis when it's moderate to severe, and in some cases even when more superficial.

"Because we can't always accurately see more superficial or mild disease, at this stage TVUSS can be used to rule in endometriosis but not to rule it out," he says.

But those advancements don't help women like Georgia, where scans have showed "nothing concerning".

Ms Wolfe says when possible, a clinical diagnosis can provide "reassurance and conviction" to a patient.

"If your symptoms are able to be put at bay from another type of treatment [than surgery], then that is an excellent outcome for the patient and their ability to live a full and thriving life."

There isn't data on how many individuals with endometriosis need surgical intervention.

Two waiting lists, no surgery

With private surgery being so expensive, many patients opt to go through the public health system.

But they can face long wait times and not being able to access the specific surgery necessary.

How endometriosis is treated during a laparoscopy will depend on how it's presenting and the way it's impacting organs, explains Ms Wolfe.

"Not all surgeons are qualified to operate on different stages of endometriosis.

Over four years, Georgia has been on two waiting lists to have the diagnostic surgery through the public system.

After a consultation with a gynaecologist in 2019, she was placed on a Category 2A public waiting list with a particular surgeon.

"I wanted to see him initially as this [excision] method was highly recommended," she says.

In 2021 she was placed on a new general waiting list. She had just been hospitalised with a ruptured cyst, with hospital notes stating it could be related to endometriosis.

At that time, she inquired about going through the original surgeon she'd seen privately, and was quoted "$13,700, give or take $100".

"I can't even begin to describe the heart-sinking feeling after seeing that amount," Georgia says.

Last year, she received a call asking if she wanted to remain on the general waiting list, and as of today, she has heard nothing.

A diagnosis is only the beginning for many

Even after a diagnosis, endometriosis continues to be a very expensive disease, explains Dr Armour. 

People can spend significant amounts of money not only on medical visits, but also pelvic physios, dieticians/nutritionists and complementary therapists to try and manage their symptoms.

Sophie Volker from Dalby, Queensland, estimates she has spent $40,000 on her endometriosis.

"That estimate also doesn't include the costs of lost work; nor does it include the costs of psychologists and any costs associated with my mental ill-health, which I would consider greatly impacted by my endo," the 28-year-old says.

For her first laparoscopy, she was fortunate enough to be covered by her parents' private health insurance with "minimal" out-of-pocket costs.

While pain-free for a short time after her endometriosis was first removed, five years later it had increased to the point Sophie was regularly taking time off work.

But she was no longer covered by her parents' private health, and couldn't afford her own.

"I was already struggling with living on my own and paying for appointments and medication.

"I opted to go through the private system because I already knew my gynaecologist was an endo specialist and was specially trained in excision surgery."

The operation cost Sophie $10,000.

"Had I not had this surgery, there's no way I could have kept working regularly and earning an income; I was in far too much pain. But because I had this surgery, I had a debt in the thousands."

Sophie says while she was lucky to be able to borrow the money from her parents, she is "really disappointed I had to borrow so much money just to be able to get to a point where I can work and function and have a semi-normal life".

A feeling of hopelessness

With appropriate private health cover, some of the costs associated with laparoscopic surgery for endometriosis are covered. But there can still be out-of-pocket expenses into the thousands.

Georgia delayed seeking private health cover, hoping the public system would come through.

She says now, with mortgage repayments rising, she can't justify the cost.

Dr Armour says the ongoing development of non-invasive diagnostic tests are likely to be the "biggest game changer" in terms of reducing time and cost to diagnosis.

"There is a lot of work being done on using artificial intelligence and machine learning to help improve diagnosis through MRI and ultrasound," he says.

"There is also potential biomarkers — something in the blood, saliva or similar that can be used for diagnosis."

Georgia is unsure of her next move.

"My mum and my husband ask me every time [I'm in pain] 'How can we help, what can we do?'

"I genuinely feel like there is nothing that can be done and this is just life for me."