Tasmanian women left behind by 'broken' health system

BY MACKENZIE ARCHER

At 10:15am, Dr Sophia Slack’s eyelids fluttered shut as the anaesthetic took hold. This was the first time she had been free of the ache that had tortured her body and mind for nearly 15 years.

About 12.30pm, Slack awoke to four new additions to her lower abdomen. Incisions made near each hip, one under her belly button and one on her bikini line, bled with the pain of more than a decade of unanswered questions.

But after just two hours and 15 minutes on the operating table, the 25-year-old finally had a diagnosis.

A single text message confirmed what she was expecting: your history is now in and confirms endometriosis in all areas resected.

Lying in bed post-laparoscopy, with a draining pipe attached to her stomach, Slack longed for the missed moments the pain had stolen from her adolescence. She had now officially joined the one in seven Australian women living with endometriosis.

Post-surgery: Dr Sophia Slack finally receives a diagnosis she has long suspected. PHOTO: Sophia Slack

But there are particular concerns for the women awaiting diagnosis in Tasmania, where medical experts point to the ways a failing public healthcare system can leave patients stuck in limbo.

Women’s health physiotherapist Rachel Andrew says a huge cultural shift is required if things are going to change in Tasmania.

“There is a massive knowledge gap,” Andrew says.

She says many Tasmanian GPs have no knowledge of pelvic pain, leaving women in pain feeling misunderstood and isolated.

“I will have [clients] who have been living with this pain for 15-20 years and you know, it is not good enough,” she says.

Women’s health physiotherapist says some patients live with endometriosis for more than 15 years before diagnosis. PHOTO: Inside The Frame

Frustrated with the level of inaction, Andrew developed an online education program Vagenius, designed to address the knowledge deficit plaguing the Tasmanian healthcare system.

“The training really goes through trauma-informed, inclusive care from the very beginning,” she says.

After completing the training modules, GPs and healthcare professionals will know how to validate the patient from the very first appointment and have the means to make a plan moving forward.

Andrew hopes to see clinics take up the training to ensure a basic level of knowledge on women’s pelvic pain in Tasmanian healthcare, for better treatment of patients.

“They are gaslit by the medical profession. They are not treated well and quite frankly, you know, I'm really sick of hearing these stories.” 

The faults in the system were left unaddressed in the recent Tasmanian election, as reported in The Conversation.

The Vagenius program offers online courses in reproductive and pelvic health. PHOTO: Inside The Frame

Meanwhile, Slack feels she is one of the lucky ones. 

She recently relocated to Western Australia to start her medical internship, after feeling neglected by the Tasmanian healthcare system.

Despite desperately seeking validation of a discomfort that had overshadowed years of her youth, Slack says she was medically gaslit by her Tasmanian doctors for eight years and discouraged from seeking definitive diagnosis via surgery – which is also the gold standard for treatment.

“They were trying to talk me out of having the operation and getting formally diagnosed, saying it wouldn't change anything, which is just absolute bullshit, really,” she says.

Often misconceived and labelled as a painful period, endometriosis comes with a tangled web of symptoms.

Debilitating pain, profuse diarrhoea, severe bloating, incontinence, painful sex, back pain and numbness were just the tip of the iceberg for Slack, who spent countless nights at the after-hours GP clinic during her university years.

“It is embarrassing, but I have gone multiple days without showers before, because I physically couldn’t. I've gone days without eating before because I physically couldn't get out of bed to walk to the fridge,” she said.

Endometriosis can only be definitively diagnosed via surgery. PHOTO: Sophia Slack

After trialling countless ineffective hormonal and pain medications, Slack found a medication called Synergy – a synthetic form of chemical menopause – which finally alleviated her symptoms.

However, due to the risk of bone density loss, Synergy’s maximum usage time was only six months and Slack soon found herself back at square one.

“I was past the point of help from gynaecologists in Tasmania,” she said.

“When you are struggling every day and waiting six-plus months for a doctor’s appointment, you place quite a lot of value on that appointment and the outcomes of it. I guess you have some sort of preconceived idea of how well it will go, and that you'll get all these happy answers.” But this was rarely the case.

“I've walked out of doctor's appointments being like, ‘Well, if they can't help me, then no one can, and I don't want to live like this. So, you know, maybe it would be better if I wasn't here'."

When asked if she wanted to train as a specialist doctor in this area, Slack sighed. “I am tired of fighting for myself as it is.”

“There is just a bit too much ground to cover and a lot of ingrained, preconceived beliefs and stereotypes that need to be broken down.”

Slack displays the medical degrees she earned from the University of Tasmania last year. PHOTO: Sophia Slack