Women with endometriosis are waiting years for answers while facing dismissal, misdiagnosis and debilitating pain, but new Australian research could change the future of diagnosis. (Image: Jodie Avery)
By Constance Siasios | @constance.siasios
“If this was a man’s issue, there would be a cure for it.”
That’s what Endometriosis and Pelvic Pain Navigator at Thrive Family Practice, and registered midwife, Vanessa Mercuri says.
Her comments reflect the frustration and lived experience of many women and girls with endometriosis.
Endometriosis is when tissue similar to the inner lining of the uterus (the endometrium) grows in other parts of the body.
There is no cure for endometriosis, but treatments can help manage symptoms.
According to healthdirect, symptoms can include abdominal or pelvic pain, heavy or irregular bleeding, bowel and bladder issues, fatigue and fertility problems.
In December 2025, a study published by Endometriosis Australia found endometriosis affects an estimated one in seven women, and while medical research has advanced, many women continue to face barriers rooted in stigma, cultural norms and limited healthcare access.
Speech pathologist Eloise Sulicich first started experiencing symptoms of endometriosis around 11-years-old.
“My whole life I had issues with constipation and urinary incontinence, which got a bit worse pre-puberty,” the now 22-year-old says.
“From day one my period was really heavy and painful and went for a really long time.”
When Sulicich was 13-years-old she “went to the doctor and was put straight on the pill.”
A similar situation happened to 24-year-old registered nurse Isabella Pascoe who first started experiencing symptoms at 12.
“I was around 12 when I had my first period, but it was very irregular. I had quite a lot of body hair, my cramps were really painful and I suffered really bad facial acne,” Pascoe says.
“I went all through high school up until year 10 with that until I went to the GP and he put me straight on the contraceptive pill.”
Federal Minister for Health and Ageing Mark Butler says, “There has been a long expectation of young women and older women to just suck it up and being in pain is just part of being a woman.”
“So we’ve got to break through that culture which is pretty deeply rooted in our society,” he says.
Associate professor and research co-lead for the CONIC Reproductive Conditions Group at the Robinson Research Institute, Dr Jodie Avery, sheds light on the limited education GPs receive on endometriosis.
“I think they only get about an hour during their whole training so it’s really important for the awareness of these conditions to be increased,” she says.
Avery says despite the minimal education and normalisation of period pain from GPs, a lot of normalisation also comes from mothers.
“Endometriosis is actually a hereditary condition so if the mother has it, quite often the daughter has it as well.”
“The mother who grew up in the 70s [or] 80s was probably told period pain is normal, so this is the information that they are going to give their girls as well,” Avery says.
Pascoe and Sulicich say their condition went undiagnosed and was misdiagnosed for numerous years by medical professionals.
“About 2021, all of a sudden, I got really sick one week with vomiting, nausea, constipation, and really bad abdominal pain so I went to the ED,” Pascoe recalls.
“They did an ultrasound and they said that I had adenomyosis.”
The Sydney Fibroid Clinic says adenomyosis is a condition where the tissue that normally lines the uterus grows into the muscle walls of the uterus. Unlike endometriosis, where this tissue grows outside of the uterus.
“I started going to a gynaecologist and he just brushed me off and said, ‘this is not a gynaecological issue, this is a gastroenterological issue’ … because my symptoms didn’t correlate with normal gynaecological issues,’ Pascoe says.
After seeing a gastroenterologist and undergoing an endoscopy and colonoscopy and finding nothing, Pascoe was told she “needed to go see a dietician or a psychologist.”
“I’ve seen five gynaecologists all up,” she says.
Within two and a half years, Pascoe has had seven gynaecological procedures regarding these issues, five of those being laparoscopic surgeries.
“Each time I’ve had [a surgery] they’ve said they’ve found endo, but whether it comes back as positive or negative, that’s another thing because sometimes the tissue may not be fully developed.”
Sulicich also had a severe eruption of symptoms.
“It wasn’t until I was 19 and in Europe when I woke up one day in excruciating pain,” she says.
“I called an online doctor and he said, ‘you’ve probably just got a bad kidney infection or UTI’, and just gave me some antibiotics.”
When Sulicich returned to Adelaide after her trip overseas, her symptoms had still not improved.
“I went to my GP, who sent me to the emergency department with a letter saying, ‘not a kidney infection, not sure what to do’,” Sulicich says.
“Once at the hospital, they asked me six times if I had an STI.
“They just didn’t believe me and kept checking and that’s pretty much the only test that they ran,” she says.
Sulicich requested to get a pelvic ultrasound done yet was refused and told there was “no need to” and was discharged with a diagnosis of muscular back pain.
“I’m lucky I had a really good GP that kept advocating for me … she sent me for an ultrasound, and on the scan they couldn’t find my appendix, and saw fluid in my stomach, and thought that my appendix had ruptured.”
During emergency surgery, doctors found extensive endometriosis covering Sulicich’s appendix which required another surgery with a gynaecologist to remove the endometriosis.
It took Sulicich eight years to receive her endometriosis diagnosis.
For Pascoe, it took ten years.
Thrive Family Practice is one of two federally funded specialised GP-led and multidisciplinary clinics to diagnose and manage endometriosis in South Australia.
Mercuri, who is currently doing her thesis on the gender bias in healthcare, states, “if this was a man’s issue, there would be a cure for it.”
“When you look at things like testicular pain and the pathways for all of that, it seems so much quicker, I also work in an emergency department in a hospital where they do prioritise male pain over female pain.
“Just because it’s a women’s issue, doesn’t make it any less than, and I know it’s very much seemed like that because we are strong, productive, getting on with our day to day. However, that rhetoric needs to change.”
Mercuri says women’s health receives limited federal funding, despite the importance placed on fertility and reproductive health.
She believes medical research has historically focused on men, leaving significant gaps in women’s health knowledge.
“Despite making some leaps and bounds, women are still fighting so much of a gender bias, and historical medicine has never actually put women first,” she says.
“Another thing that really angers me is when women think they’re going crazy or they’ve got anxiety because it’s related to pain, and that’s one of the biggest disservices that we can do to a woman, is make her feel that way.”
Pascoe says endometriosis education should extend beyond gynaecology because the condition can affect multiple different organs.
“Any of those specialty areas should have that education on how to deal with it, because if you’ve got a gynaecologist that doesn’t know much about the bowels, and you’ve got endometriosis growing all over it, you don’t want them touching your bowel.”
Endometriosis Australia says there are four stages or grades of endometriosis; however, the stage doesn’t necessarily reflect the level of pain or other symptoms experienced.
Pascoe says she has stage two endometriosis which is considered mild to moderate, yet she still experiences acute pain.
Sulicich says, “I had stage four endometriosis, and it was all over my kidneys, uterus, bladder, appendix, ovaries, and it was actually in my ribcage, near my liver as well.”
The daily impacts of endometriosis are invisible to the naked eye but are constantly there.
Pascoe regularly takes two strong narcotic pain reliefs as well as anti-inflammatories for pain management.
“Sometimes none of it will work, other times it might just scrape the surface, and sometimes it’ll work like a charm,” she says.
“Every now and then it hits a really bad patch, it can go on for weeks just constant pain all day and all night, I’d be lucky to get an hour or two of relief.
“At times, having endometriosis has made me not want to go out at all, because I was always so bloated and in pain, any sort of food or drink would sometimes cause more pain,” Pascoe says.
Currently, diagnosing endometriosis usually requires laparoscopic (keyhole) surgery, with tissue later confirmed under a microscope.
Pascoe says a single laparoscopic surgery costs $2,500, and even with Medicare and private health insurance, it still came to $1,800 out of pocket.
Mercuri says that in the public system women can be on a waitlist for surgery for three-to-four years and those with private health insurance can still expect to wait six or seven months.
As of early 2026, Butler has established a $792 million Women’s Health Package which includes an additional 11 new endometriosis clinics in Australia, improving GP training, paying less for essential medicines and accessing more support through Medicare and the Pharmaceutical Benefits Scheme.
However, Butler says, “the specialist clinics are generally dealing with patients who have already been diagnosed and tend to have more severe symptoms.”
When asked about patients who feel the changes have come too late, Butler says, “I recognise this should have happened years ago but I’m proud that we’ve acted on it now.”
Avery explains the IMAGENDO study, co-led with Professor Louise Hull, is focused on finding faster and less invasive ways to diagnose endometriosis.
Back in 2016, Hull reviewed around 15,000 studies to find potential biomarkers which detect endometriosis and found that imaging was the best biomarker including MRI and ultrasound.
IMAGENDO uses machine learning technology, a form of artificial intelligence, to combine information from pelvic ultrasounds and MRI scans to better identify endometriosis lesions.
“We’re looking at trying to bring that diagnosis from 6.5 years with surgery down to one,” Avery says.
“The recovery time after a laparoscopic surgery is at least six weeks which is unsustainable especially with work or school.
“If they can have an ultrasound or an MRI, that’s not as invasive and they don’t have to go straight into surgery… then they now have a choice.”
Avery explains that receiving an earlier diagnosis can also help young women make informed decisions about fertility treatment sooner.
“If someone knows they have endo, especially if they are young, they may choose to freeze their eggs earlier, and with a diagnosis could save them around $10,000,” she says.
Avery says the research team is now seeking funding to commercialise the imaging technology.
Butler says, “what I want to see is women and teenage girls listened to empathetically and have their concerns that they raise with whomever, particularly in the health system, taken seriously and examined thoroughly.”
A piece of advice from Mercuri is “you know your body best, you’ve been with yourself your whole life, you know what’s not right.”
Pascoe says, “when I woke up from surgery and was told I had endometriosis I started crying because I knew I was not crazy.”
For generations, women have been taught that pain is simply part of being a woman.
Pascoe and Sulicich’s stories suggest the real problem was never the pain itself: it was how long society expected them to live with it.
Readers experiencing symptoms of endometriosis are encouraged to seek medical advice. Further information and support are available through Thrive Family Practice: https://thriveendoclinic.com.au
For more information about endometriosis visit: https://endometriosisaustralia.org