Surgery can provide relief from the 'debilitating' pain of endometriosis, but patients are facing waits of several years in Canberra's public system
Katherine waited around a decade to be diagnosed with endometriosis, but she faced another lengthy wait when it came to surgery. (ABC News: Ian Cutmore)
In short:
Laparoscopies are surgeries which can be used to both diagnose and treat endometriosis.
In Canberra, endometriosis patients report facing long wait times to access them via the public system.
What's next?
Some are turning to the private system to help, where wait times are much shorter. But that carries separate financial challenges.
After an 11-year wait to be diagnosed with endometriosis, Katherine thought the worst of the waiting was over.
She'd always suffered with extremely painful and heavy periods but had grown up being told that was normal.
It was when she was about 15 years old and on a school trip that things came to a head.
"I was hiking on a school camp and I tripped and shattered my ankle and I walked on it for the rest of the hike," she said.
"When I returned to Melbourne and my regular GP and they were shocked that I was able to walk on it ... and I just said, 'well, it didn't hurt as much as my period did'."
She said prior to that many doctors had not taken her pain seriously and she'd felt she was being branded as hysterical.
Another piece of advice was to just wait and get pregnant to see if things settled then.
"I'm talking about pain that makes you pass out, pain that makes you spontaneously vomit, pain so bad that you genuinely have no idea how you're going to keep going in your life," she said.
Katherine is now scheduled to have her laparoscopy in December. (ABC News: Ian Cutmore)
In her teens, she was started on some medication, but it wasn't until she was in her 20s that she was formally diagnosed.
At the time, Katherine said she just wasn't in a position to undergo surgery.
"Working ... at university, it's very busy ... the idea of stopping your life ... there's really no convenient time to do that," she said.
Instead, she trialled different types of birth control and pain relief.
It's estimated Katherine is one of about one million Australians who live with endometriosis.
For many, it's a debilitating condition where tissue similar to that lining the uterus grows outside it, causing inflammation, scarring and pain.
'There was a chance I wasn't going to make it'
The Canberra woman, who has asked that her last name be withheld, said it wasn't until her mid 30s, with the pain only getting worse, that she decided it was time to look at other options.
"I realised that if it just continued to get worse and I had to wait another 20 years for menopause, there was a chance I wasn't going to make it," she said.
In 2021, she received an initial referral to the Canberra Endometriosis Centre, which is located at Canberra Hospital.
Katherine did look at going privately at the time as she'd been warned about the waitlists, but it wasn't something she could afford at the time.
So, the waitlist it was.
But she said the years dragged on without any news from the hospital about an appointment.
She recalled that she did get a few calls from the hospital asking her if she wanted to stay on the list, but that was it.
Earlier this year, she went back to her GP to see if she could find some answers, and it was at that appointment where she was told she was classed as a category 2.
That category meant she should have been being seen and treated within six to 12 months, she explained.
And not long after that, she received a call from the hospital, asking her to come in for an initial appointment.
But what she didn't realise was that appointment was only to discuss lifestyle and pain management and check surgery really was the best option.
It's estimated around a million Australians live with endometriosis. (Women Suffering from a stomach pain, Sora Shimazaki, Pexels license)
By the end of it, she said she was warned to expect at least another 12 months before surgery.
For Katherine, it was the final straw.
"I was basically told [that] if I was comfortable and was able to afford seeing [the surgeon] privately, that was a better option," she said.
That's a process which is now underway, and she's expected to have the laparoscopy done in December.
But it will leave her with a bill of a couple of thousand dollars.
Unclear exactly how long the waitlist is for endo surgery
Canberra Health Services (CHS) declined an interview with the ABC.
It was also unable to furnish exact data showing how many people were on the wait list for an endometriosis surgery nor could it say how many patients the Canberra Endometriosis Centre, which operates out of the Centenary Hospital for Women and Children, had on its books.
In August this year, the public system had 2,400 patients on the gynaecology appointment wait list for an initial or recurring appointment.
And in November, almost 700 people were on the waitlist for gynaecological surgery.
Some endometriosis patients are opting to go privately because the wait times are so long in the public system. (ABC News: Tobias Hunt)
CHS couldn't provide a breakdown for how many of those were for endometriosis, however.
A spokesperson for CHS said there were services available to support patients with endometriosis as they waited for surgery.
That included nurse-led services which could assist patients to implement "support and management" strategies while waiting for surgery.
"This service aims to reduce the need for surgery and provides pathways for pelvic pain patients to access care," they said.
They said allied health professionals could also provide advice and management for pelvic pain.
'Debilitating' pain got worse
Like Katherine, Shantell Cunningham went many years without an explanation for the abnormal period pain she was experiencing.
Throughout the course of her 20s, she found the pain was getting worse, as were its impacts on her life, career and relationships.
After collapsing at home at the top of the stairs and being unable to get up, she went back to the GP to try find solutions.
Shantell Cunningham waited for a year without any updates from the hospital or news about when she would be seen. (ABC News: Toby Hunt)
Just like Katherine, she turned to surgery and the Canberra Endometriosis Centre, where she had a remarkably similar experience, saying she received no communication other than a text message after 12 months to tell her her referral had lapsed.
The problem was that as time passed, Ms Cunningham's "debilitating" symptoms were getting worse, the pain was increasing and many of her usual pain management methods like heat packs and hot water bottles weren't helping
"It got to the point that I was burning myself because I needed it so hot to even reduce the pain," she said.
It was also impacting her work with all the time she had to take off.
After a year of waiting, and no communication about how much longer she'd be on the list for, she decided that going privately was her best option.
'We're not just a number'
Once she made that decision, things progressed quickly.
Within a few months, she had an appointment with a specialist, who made a few recommendations like going on the pill ahead of the surgery, and sent her to Sydney for scans.
Only a few months later, she was called with a date for surgery.
Some patients are turning to the private system after spending what they believe is too long languishing on public waitlists. (ABC News: Tobias Hunt )
She said the laparoscopy had done "wonders" in reducing the pain and also improving her mood and energy.
But it wasn't just the speed at which she was able to move through the system, it was also that she felt the public system had been dehumanising and had treated her like a number.
"When it comes to your health and that part of your health is linked to your fertility and your lifestyle, having no outreach from the clinic was shocking," she said.
"There are hundreds of us just in the ACT that have endo and PCOS. But we're not just a number, and we need that care."
Ms Cunningham eventually got her surgery, but found herself $10,000 out of pocket, even with private health cover.
And despite the success of her surgery, Ms Cunningham is still concerned about the future, and if she needs another laparoscopy, she's likely not going to be able to afford it privately again.
That could mean an eventual return to a growing waitlist.
Pelvic pain clinic providing another option for care
On top of the CHS service, Canberra is home to a federally-funded pelvic pain and endometriosis clinic, one of several around the country which were promised last year.
The federal government provided $60 million funding to open 22 clinics around the country.
In Canberra, one quietly opened late last year, and is now seeing patients who experience pelvic pain, painful periods or painful sex and those who have conditions like endometriosis.
Clinical lead Tara Frommer said demand for its services had been steadily growing.
While it can't necessarily take the burden off the public system surgery wait lists, Dr Frommer explained its focus was more on pain management and quality of life.
Tara Frommer said demand for the clinic had been steadily increasing since it opened quietly last year. (ABC News: Dave Sciasci)
"Lots of patients in this space have often felt fairly dismissed and have often been under-recognised and under-managed," she said.
"We have ... a structure that allows them time so we can really focus on their individual story and where they are in their journey to help give them agency so they can navigate the medical system better."
She said many of her patients had found themselves in a similar "sad" situation to Katherine and Ms Cunningham, where they'd sat on waitlists for more than two years, with their pain getting increasingly worse throughout that time.
"It's a real shame to see, because we have lots of options that we can manage them with, but they weren't being used and they were instead just waiting with that deterioration," Dr Frommer said.
She stressed potential patients didn't need a formal diagnosis before coming to the clinic and that their pain and symptoms would be taken seriously.
A first appointment with a nurse at the clinic is fully funded by the federal government, while patients will need to pay the gap fee for subsequent doctors' appointments.
For now, Dr Frommer said the waitlist was reasonable and people should expect a first appointment with a few weeks.