In Australia, an estimated one in seven women live with the burden of endometriosis. All of these women agree that the healthcare system has failed them as they make decisions about their care. We were encouraged to see the federal government release the National Action Plan for Endometriosis in 2018. Since then, hundreds of millions of dollars have been poured into research, awareness campaigns and clinical care. Patients and medical providers alike are adamant that additional measures are needed. They wish to see improved continuity in the availability of the clinic, as well as better pain management training for general practitioners (GPs).
Today, Australia is home to 22 specialised endometriosis and pelvic pain clinics, two of which are based in my home State of Western Australia. Despite these resources, many patients are still waiting too long to be diagnosed and treated. Dr. Tamara Hunter, a leader and pioneer in the field, stresses the importance of boosting the number of clinics. She believes GPs need better training to help support patients who are enduring the condition.
Long Wait Times and Patient Experiences
Shannon Darwall’s story exemplifies the desperate need for better services. After undergoing surgery in 2022 to get a suspected endometriosis diagnosis, she joined the public waitlist. This decision followed an adult life of experiencing debilitating pelvic pain for years. Her road to diagnosis is sadly typical for women living with endometriosis, which on average takes seven years to receive a proper diagnosis.
Darwall expressed her anger at the lack of treatment available to her. She continued, “The most common solutions are hormonal birth control, but every kind I’ve been on has changed my mental state and made me feel depressed. I almost feel like I have to decide between my physical pain and my mental pain. This anecdote underscores the debilitating role this affliction plays on her quality of life.
Kimberley Shepherd has been a user of the private healthcare system as a patient since the age of 17. It wasn’t until Shepherd had a second, corrective surgery that she truly gained relief from her pain. Her early experiences were about confusion and inappropriate treatment.
They’d never even suspected endo, despite the fact that I’d tried eight or nine different pills … and nothing worked with my heavy bleeding or my pain,” Shepherd recounted. Her inability to cope with her struggles drew her into a life-altering dependence on painkillers. She remembers, “They threw all these opiates at me… which I ended up using and started—without knowing—got pretty hooked on it.”
The Need for Better Pain Management
Dr. Tamara Hunter makes the case that pain relief for people with endometriosis hasn’t been a priority. It’s not managing the disease, it’s managing the human being that is surrounding the disease,” she said. Hunter would like to see a more holistic treatment approach that includes addressing both physical and mental health sides of care.
She emphasizes that patients often face a dual challenge: managing both endometriosis and mental health issues. Dr. Hunter passionately called for greater attention to two chronic diseases—mental health and endometriosis. He illustrated just how tightly bundled up these conditions are.
Dr. Hunter points out an equally important concern, that most public patients are funneled to one tertiary service. This leads to increased burdens and overcrowding, leading to longer wait times for care. All of these patients are being funneled into this one tertiary service, she added. The shortage of open clinics only adds to the burden for both patients and providers.
Future Directions for Endometriosis Care
In February 2023, federal officials announced $3 million in new funding for 11 more clinics throughout Australia. This step is a strong indicator of a positive trend towards filling current gaps in care. For Dr. Hunter, it’s only the tip of the iceberg. We’ve been saying for a long time that we need more specialized facilities, she says. She highlights the need for improved training for GPs on pain management practices.
Inviting patients to consider different approaches to their long-lasting discomfort, Dr. Hunter suggests lab-based researcher Lorimer Moseley’s techniques. These strategies aren’t going to cure all patients. Patients can find innovative ways to attain relief outside the conventional medical solution.
Although we’re seeing strides in funding and resources, the fight is far from over for endometriosis patients all over Australia. As they continue to call for greater support and understanding from the healthcare system, advocates like Dr. Hunter remain committed to pushing for necessary changes.
