In 2015 when Sarah Nix got married, life was looking good. With a new house, a husband and a steady job, the pair were planning on starting a family.
But then she began having “crippling” pelvic pain, causing her to pass out. After numerous scans, X-rays and blood tests – which all showed nothing - a laparoscopy finally revealed that Sarah was suffering from severe endometriosis.
Endometriosis is where cells similar to the lining of the uterus grow outside the uterus. The condition can cause cyst formation, adhesions, and severe pain. Around one in 10 Australian women are affected.
Sarah’s endometriosis was covering her bowels, ovaries and bladder. Her case is so severe that she’s no longer able to work, due to the strong pain killers she’s now forced to take to treat the condition.
“We can’t go out, we don’t do anything, we don’t have a life, I don’t work so there’s only one income,” she tells Insight.
Sarah can no longer work due to the severity of her endometriosis. Source: Insight
Despite having private health insurance, Sarah is currently facing some $30,000 of debt.
“It’s just the out of pocket expenses, so the gap between I guess what the doctor charges and what’s left, so private health doesn’t cover a lot when you think about it.”
But for Sarah, going to a public healthcare provider is not an option.
“I’ve been public and I’ve waited upwards of four hours to get pain relief and when you’re in so much pain and you’re on the floor you can’t do it, you can’t wait four hours, you need relief now and you only get that in a private hospital.”
The economic burden of endometriosis
Research from Western Sydney University and the University of New South Wales revealed endometriosis costs Australian women an average of $31,000 each per year.
“So some of this $31,000 is healthcare costs, which is out of pocket, some of this money is being spent on things like carers, so do we need someone to do childcare? Do we have to pay someone to clean the house?”
“But the majority of it is lost productivity,” Dr Mike Armour, post-doctoral research fellow, from Western Sydney University told Insight.
A hysterectomy would hopefully mean pain free for the rest of my life, it may not, but it’s a chance I’m willing to take.
Dr Armour says the burden doesn’t end at the individual - it’s thought the cost to the Australian economy could be as high as $9.7 billion annually.
“It might be that employers need to hire someone else because of low productivity, [or] it can be because there’s less money in the economy because women aren’t earning as much because they have to take sick days.”
The future
There is no cure for endometriosis, and with five expensive surgeries already under her belt, Sarah says she is seriously considering a hysterectomy to stop the pain, and the mounting debt.
"A hysterectomy would hopefully mean pain free for the rest of my life, it may not, but it’s a chance I’m willing to take,” she says.
