Nearly every time Dr Kate Tyson conducts a consultation with a new patient at the Julia Argyrou Endometriosis Centre at Epworth, she hears a story about the barriers they’ve faced before getting to her.

Feeling dismissed, not listened to, misunderstood, and suffering through years of debilitating pain with undiagnosed endometriosis is very common. Indeed, there is an average of 7 years between the onset of symptoms and an endometriosis diagnosis.

It’s an issue that Dr Tyson is passionate about as the Director of the Julia Argyrou Endometriosis Centre at Epworth, a new centre in Melbourne pursuing a patient-centric and holistic management model to improve outcomes for women and gender-diverse people with endometriosis. 

Endometriosis is a condition where cells that are similar to the ones that line your uterus grow in other areas of the body. It’s a widely misunderstood condition, but it is estimated by the Australian Department of Health to affect one in nine Australian women. It’s likely the true prevalence is actually much higher, because these official numbers don’t account for transgender and gender diverse people, or those who remain undiagnosed.

“It’s the reason why I do my job because every time I consult, there’s always a story of a patient who has had a horrific journey up until this point in time,” Dr Tyson says.

“I’ve got hundreds of examples of patients that had system access and navigation issues that have had many years of pain or infertility.”

Some of the most common symptoms of endometriosis include severe period pain, ovulation pain, infertility, pelvic pain, pain during or after sex, pain when using your bladder or bowels, heavy or irregular vaginal bleeding, fatigue, among many others. No two experiences of endometriosis are the same, and the condition will often get worse if left untreated.

The condition can have a massive impact on someone’s life, causing a range of physical, emotional, social and financial challenges. Sometimes, endometriosis can inhibit one’s ability to participate as fully in the workforce, or in day-to-day life, as they’d like to do. 

Dr Tyson says there is a lack of knowledge about endometriosis and how it happens, and access to the right clinicians can be challenging for patients.

“There’s a diverse manifestation of the disease. Some patients get one episode and don’t need any further care and other patients need multiple episodes of care throughout their reproductive life,” Dr Tyson says. 

“What we know is that access to skilled and knowledgeable clinicians in that space is challenging for patients. The challenge is amplified in the diverse population, especially in our culturally and linguistically diverse population.”

It’s a problem the Julia Argyrou Endometriosis Centre at Epworth is tackling head on, with its mission to provide patient-centred, holistic care. A key factor in this mission is allowing patients easier access to the help they need. Critically, patients are able to self-refer. 

“We see many people that don’t have access to a healthcare provider because of the normalisation of endometriosis symptoms, whether it’s been by family or friends,” Dr Tyson says.

“Sometimes, even family doctors can minimise the symptoms. At the Centre, we have a skilled nurse coordinator, who will be able to detect symptoms and refer them to the right people.

“Our nurse coordinator is free to access any patient seeing or planning to see an Epworth-based gynaecologist. The patients can self-refer, and they don’t need a referring doctor or clinician, which also reduces barriers.”

The Julia Argyrou Endometriosis Centre at Epworth has an ultimate goal to find a cure for endometriosis. In the meantime, it’s working to reduce the personal and societal impact of the condition through prevention and early diagnosis, as well as patient-centred, holistic treatment. Care coordination, education advocacy and research are cornerstones of the work being done.

The centre has been operational since late 2021 and has a clear vision of what it would like to achieve over the next five years - at the centre of that is changing the narrative around period pain and endometriosis.

“It’s important more Australians know that chronic and severe pain is not normal,” Dr Tyson says.

“The burden of this condition and the total cost of the disease for the country is enormous. We do have to start shifting the old school thinking.”