ABC News
Stateline
When Lianne Williams arrived at a Perth emergency department three years ago doubled up and screaming in agony, she was stunned by the response from medical professionals.
The 26-year-old told the doctor on duty she had her period and was bleeding heavily, but the pain was off the scale.
No stranger to discomfort, Ms Williams was taking opioid medication to treat what would later be diagnosed through surgery as stage 4 endometriosis.
But her symptoms only seemed to be getting worse, and she went to hospital concerned something else was wrong.
“There was a deep, boggy, stabbing pain all over my abdomen, a burning twisting feeling,” she said.
“[The doctor] kind of looked at me and didn’t really seem to understand the pain I was going through.”
“He said ‘well we can send you for an ultrasound, but it might be a long wait and it’s the weekend as well.'”
She sat in the waiting room for about an hour, but the doctor didn’t return.
Instead, she was given some leaflets offering advice on addiction.
“I was screaming in pain and for someone to look at you and go ‘oh, here’s an addiction brochure’, it’s pretty condescending,” Ms Williams said.
“I think they were thinking that I was doctor shopping.
“It shows a lack of understanding and a lack of empathy, which in health care, you should definitely have.”
Clinics offer hope
Ms Williams is not alone in her experience and a new clinic dedicated to treating endometriosis has opened in Perth in a bid to make it easier for patients to access help.
She was one of the first patients to come through the centre, which is one of more than 20 endometriosis clinics to open across the country in the past 12 months.
“When you come in here, you know that you’re in a safe space and that you can say exactly how you feel … and they’re going to try their best to help you,” Ms Williams said.
Perth clinic project coordinator Lucy Stewart carefully documents each patient’s history of pelvic pain ahead of their first appointment.
She said demand for the service was high, with 50 people on the waitlist before the clinic opened last year.
“These people have been experiencing chronic pain for years and years, so it obviously has a huge impact on mental health and emotional wellbeing,” she said.
“A lot of patients spend a couple of days bedridden. Some people have to take time off work, some people have lost their jobs.”
Endometriosis Australia chief executive Maree Davenport argues there was still a long way to go before the condition was on an equal footing with other chronic diseases that receive more attention.
“If this was a male disease, not a female-gendered disease, this would have been dealt with for many, many decades,” she says.
Change won’t happen overnight
Despite the growing prevalence of dedicated endometriosis clinics, concerns remain about the lack of awareness among doctors.
Ms Davenport said some women were still struggling to have their pain taken seriously by their GP.
“I still hear unfortunately absolute horror stories with people in genuine pain being dismissed,” she said.
“We’ve got to do better than just saying ‘it’s your period, it’s supposed to be painful, move on, stop being a wimp’.”
Royal Australian College of General Practitioners president Nicole Higgins said awareness of endometriosis had come a long way.
“With two thirds of our GPs in training being women and with 50 per cent of our GPs being women, [endometriosis] is a common problem we deal with,” Dr Higgins said.
“Pelvic pain and reproductive health is bread and butter general practice.
“Things have certainly shifted over the last five to ten years.”
But Dr Higgins said women in regional and rural areas still struggled to access endometriosis support.
“Place-based solutions are really what’s important, versus just plonking clinics in certain places,” she said.
Perth clinic director Andrew Leech said the only other endometriosis clinic in WA was in Albany.
He said health professionals would this year travel to the state’s north and offer telehealth appointments to increase access to services across WA.
Dr Leech reassured GPs that this would not mean that they would lose their patients to the clinic in the long term.
“We don’t want to take those patients away from their regular GP,” he said.
“We want to manage that specific condition and support those patients so that when they do go back to their GP they feel empowered to talk about it a bit more and understand their body a bit better.”
Fertility struggles common
Endometriosis can cause fertility issues for many women, with Ms Williams and her partner suffering a heartbreaking miscarriage before having their son Orlando without the use of IVF treatment.
Despite the couple’s elation, Ms Williams’ pelvic pain had since returned.
She said specialists at the clinic were looking into alternatives to medication to treat her symptoms.
“I don’t want to be taking opioids because I have a 14-month-old. I need to be alert, I need to be onto everything,” she said.
Dr Leech said while medication had its uses, it could also cause some patients more harm than good.
“We know that these drugs actually increase the sensitisation of pain systems, so pain becomes worse over time and harder to treat over time,” he said.
“I’m certainly not judgemental of people who have been given that medication and are on that medication because … it can be a case of well ‘we’ve tried everything else’.”
He said one of the aims of the clinic was to reduce patients’ dependence on pain-killers by offering alternatives, including pelvic health physio.
Physiotherapist Siobhan Lenihan, said many patients actually made their symptoms worse because they were subconsciously bracing their bodies against pain.
“These people are in such severe amounts of pain for long periods of time so their body starts to develop these bracing patterns,” she said.
“And that often happens through the pelvic floor just because of how close it is to the area that’s being affected with endometriosis.
“The pelvic floor is a big amplifier of pain in these people.”
‘We need to do so much better’
Endometriosis can only be removed through keyhole surgery, and the condition returns in one third of patients after treatment.
Until a cure is found, the clinics are only likely to get busier.
The Federal Government said almost $29 million had been spent on endometriosis research since 2018.
Between 2015 and 2022, the National Health and Medical Research Council spent $6.4 million on endometriosis.
In comparison, the latest available figures show the council has spent $530 million on research relevant to diabetes.
Ms Davenport said more needed to be done to close the funding gap.
“This is as common as diabetes. Look how much money has been invested in research there, advertising, promotion, awareness,” she said.
“We need to do so much better.”