By Grace Newton, Indiana O’Neill and Magdalena Murdoch
Naomi Gay has always been a victim of painful periods. From headaches, to vomiting, to collapsing at her local shops, she is just one of many women in Australia who have been told “that’s just how it is”. She saw numerous GP’s and gynaecologists but was left with more questions than she began with.
“Doctors would say ‘you have coeliac disease’, oh, ‘now you have Crohn’s’, actually ‘you have anxiety’,” she said. “I think that’s the one that gets to most women because you are told you are an anxious, premenstrual woman and to just calm down and get on with life.”
It wasn’t until she was 28, after about 12 years of confusion and frustration, that she was diagnosed with stage four endometriosis. Naomi was told by her gynaecologist that she could essentially pick up all of her pelvic organs like a basketball; everything was in a ball of mess. Had Naomi not visited a particular GP due to severe pain, who then referred her for scans to investigate possible endometriosis, she’s unsure how much longer she would have remained in the dark.
And, according to Naomi her experience shows the healthcare response to endometriosis in Australia is broken.
Advocacy and analysis
Endometriosis is a chronic condition that occurs when tissue, similar to the lining of the uterus, grows outside of the uterus. Symptoms of endometriosis may include abdominal pain, infertility, heavy periods and feelings of tiredness or anxiety.
Due to the broadness of the symptoms, it can be a difficult disease to diagnose and may take years, with sufferers commonly misdiagnosed with chronic pelvic pain syndrome, bleeding disorders, and irritable bowel issues. More than 830,000 women have confirmed or suspected endometriosis by the age of 44, and it accounts for as much as 50 per cent of women who present as infertile.
“It just doesn’t make sense,” Naomi said.
“If they can build a robot that can drive a car, how can we still not identify a disease like this, one we can actually see?”
Dr Alissia Hui, a research fellow at the Sphere Centre for Research Excellence at Monash University in Victoria, has spent many years working in general practice and more recently on supporting women with endometriosis. Drawing from both clinical experience and research, she’s helping to develop a new Endometriosis Management Plan, a tool designed to help GP’s recognise, diagnose and manage the condition early.
“We’ve been tasked to develop an Endometriosis Management Plan for use in the primary care setting. It’s designed to support both patients as well as primary care professionals in navigating the diagnosis and management of endometriosis in general practice”, she said, adding the goal is to bridge the gap between clinical guidelines and everyday practice and to reduce economic costs nationally (estimated to be $6.5 billion per year in Australia).
“We’ll directly address the issue that we’re discussing today, the issue of symptoms being dismissed or not recognised and perhaps being misdiagnosed for patients.”
“The plan has been developed by researchers, but really importantly, it’s being developed with input from health professionals, from endometriosis organisations, and importantly, from people with lived experience with endometriosis.”
This patient-informed approach shifts the long-standing norm of delayed diagnosis and dismissal by embedding endometriosis care into everyday general practice, recognising that most patients will first present their symptoms to a GP, not a specialist. By giving primary care providers the tools to understand the severity of these symptoms, they can act early and avoid years-long delays in diagnosis that many patients, like Naomi, have experienced.
In 2018, the Australian Government released the National Action Plan for Endometriosis, which promised to improve the quality of life for those living with the condition and reduce the burden of disease for individuals and the nation. The priorities were threefold: awareness and education, clinical management and care, and research.
The action plan discussed six key criteria to be achieved, including endorsing Australian Clinical Care Guidelines, access to appropriate healthcare, school menstrual education programs, for GP’s to exhibit a base-level increase in understanding endometriosis, optimal care pathways and domestic research program expansion.
People with endometriosis present with such a wide range of symptoms, they can also receive quite a wide range of treatments, and correct diagnosis is really important.
Progress has continued from the 2018 report, with several initiatives aligning with the plan’s goals being launched, including SPHERE, which is supported by the National Endometriosis Clinical and Scientific Trials Network,
Dr Hui said one of the key barriers to early diagnosis lay in this initial interaction between patients and general practitioners.
“Patients are often hesitant, and the GP is usually the first point of contact in the health system, and we think that it’s probably due to a lack of education and awareness around menstrual health and knowledge of what’s normal and what’s not normal, as well as associated period stigma and embarrassment from patients,” she said.
Looking at a “gold standard” model of endometriosis care, Dr Hui added the management plan would provide a tool to support general practitioners, who perhaps feel their skills are not so strong and would like to get assistance.
“There’s going to be assistance through provision of useful resources they can use when consulting patients, as well as a step-by-step guide tool that they can navigate through to generate a plan,” Dr Hui said. “We’re hopeful that it will also help those who are already really comfortable or quite expert in treating endometriosis, helping to improve efficiency.”
Healthcare gaps and institutional mistreatment
In 2024, 2 out of 3 Australian women reported health care-related bias and discrimination, particularly when seeking diagnosis and treatment.
That, according to Dr Stephanie Trentacoste McNally, the director of obstetrics and gynaecology at the Katz Institute for Women’s Health in New York, is part of the dismissive attitude towards women patients, which can also contribute to late diagnosis.
“It’s no accident that the word ‘hysteria’ originates from the Greek word for ‘uterus,’” said wrote recently.
“There’s still this pervasive belief in the medical community that anytime a woman complains about her health, it’s either related to her hormones or all in her head.”
Dr Hui added: “Some patients have found their symptoms being dismissed as normal, just part of being a woman, and that perhaps they should just get on with it.”
A 2008 study which surveyed 1,000 people who suffered abdominal pain, found that, although pain scores were rated similarly between women and men, women waited on average 33 per cent longer in the hospital when being treated.
“Symptoms or conditions can certainly co-exist,” said Dr Hui. “People with endometriosis present with such a wide range of symptoms, they can also receive quite a wide range of treatments, and that correct diagnosis is really important for them to receive that individualised treatment for their unique situation.
“Recent research has indicated that autoimmune conditions like coeliac disease are possibly more common in women who have endometriosis.”
What annoys me the most about endo is that most people think you are just in bed with bad period pain.
Not only are the symptoms difficult to pinpoint, but the conversation around endometriosis is often awkward and limited, causing a lack of knowledge among individuals. As part of a study on the dismissal of period pain, it was found 51 per cent of respondents thought their menstrual pain was normal before being diagnosed with dysmenorrhea — extremely painful period contractions caused by a chemical imbalance in the body.
In a 2023 report on endometriosis in Australia, it was found one in seven women were diagnosed with endometriosis by age 44-49, roughly 14 per cent of Australian women.
Dr Hui said patients with endometriosis attend on average, five different doctors before diagnosis.
Physically, women may encounter infertility and extreme pain throughout their lives that is left untreated. And, from a mental perspective, people with endometriosis often experience anxiety and depression, as well as chronic illness.
The medical experience
The first time Naomi heard of endometriosis was at 26 when she was sent to a gynaecologist by her GP. The gynaecologist looked at her scans, did a pap smear and dismissed any signs of endometriosis or reproductive concerns. With hindsight, Naomi says that was completely inadequate.
Effective diagnosis of endometriosis requires a laparoscopy, which allows potential identification and removal body in the same surgery. Although it is recognised as quite a minimally invasive procedure, the recovery period can stretch anywhere from a couple of days to a couple of weeks and leave the patient in intense pain and discomfort.
Naomi recalls being bedridden for several days and waking up after her surgery extremely sore and confused. This was an experience she would have to undergo another three times, including having her fallopian tubes removed.
Naomi Gay, post-surgery, after years of undiagnosed endometriosis. Photo by Magdalena Murdoch
However, even after diagnosis the challenges sufferers face do not disappear. There were over 3,600 endometriosis-related emergency department presentations in 2021 to 2022, but women like Naomi are still reluctant to go to the hospital.
“I don’t want to clog the hospitals. I can’t go there every month. I don’t want to,” Naomi said.
“What annoys me the most about endo is that most people think you are just in bed with bad period pain.”
“I either can’t have a bowel movement, or I can’t stop going. And working in kindergarten, this experience is anxiety-inducing. Am I going to have to run to the toilet? If I go on an excursion, I can’t leave the kids.”
Endometriosis Australia found dealing with the disease in the workplace can be incredibly challenging due to unpredictable pain, fatigue, and other symptoms that can interfere with daily responsibilities and productivity.
Many women feel anxious about managing flare-ups during work hours, especially in roles that require physical activity or offer little flexibility, leading to increased stress and potential job insecurity. Endometriosis Australia conducted a survey in 2021 with 389 women who live with endometriosis. The results found due to their endometriosis, one in three women had been passed over for promotion, one in six had lost their jobs, and 70 per cent had to take unpaid time off work.
I was told I had to start looking at donor eggs. That was when it was most confronting. I wouldn’t have had to do any of this if it wasn’t for the endo. All those years of inflammation and misdiagnosis.
However, since the COVID-19 pandemic, 80 per cent of women said working from home made their endometriosis manageable, with two-thirds highlighting they were even more productive.
The inability to work is just one factor in the economic burden of endometriosis. Researchers found medical expenses, lost income and carer costs all contributed to the bill.
The years of pain, inflammation and unanswered questions impacted Naomi’s life forever, leaving her unable to conceive a child naturally and requiring years of IVF treatment.
“I was told I had to start looking at donor eggs. That was when it was most confronting”, Naomi said. “I wouldn’t have had to do any of this if it wasn’t for the endo. All those years of inflammation and misdiagnosis.”
However, Naomi was successful in falling pregnant, and in 2022, her miracle daughter Ruby was born.
Although she would do it all again, she often thinks about how different life could’ve been if she had received proper attention and care from medical professionals from the beginning.
She estimated the disease had cost her between $75,000 and $100,000.
For Naomi, the path from diagnosis to treatment was long, painful and financially draining. Yet, her story is not unique; it represents thousands of women across Australia who have been misdiagnosed, dismissed or ignored by the system.
“In a perfect world, there would be plenty of research, facilities, and doctors where women feel comfortable seeking help- but that’s still just a Band-Aid,” Naomi said, “we need a cure.”
New research, national plans and institutes such as Sphere offer hope for sufferers to be believed and supported in navigating their journey, however systemic changes take time.
“If I could have three wishes,” Naomi said, “it would be early diagnosis, funding for research and more facilities of where to go.”
Main image by Wikimedia.
