Select Committee on Endometriosis
I rise humbly to speak on the tabling of the final report of the Select Committee on Endometriosis. I had the great honour of joining this committee midway through last year, and I have to say that it has been a profound experience to bear witness to the testimony we have heard.
I do not suffer from endo, nor do I suffer from persistent pelvic pain—and boy, do I consider myself lucky, because the testimony I have heard from those who do has been heart-rending. It has truly impacted me as a woman and as a mother of a young daughter.
From the get-go I want to pay tribute to two witnesses, two of many incredibly brave witnesses. These women are phenomenally brave, they are tough. They had to be; life did not give them a choice. These women, and all women who suffer from this cruel, horrible and debilitating disease, are warriors, and I recognise you.
The first endo warrior I want to mention is Deanna Wallis. Hers was the first testimony I heard, and I can honestly say it changed what I thought I knew about the world. Deanna gave evidence of the multiple surgeries, but worse, the multiple dismissals of her personally and—I do not think it is a stretch to say this—of her humanity.
Her desperate search for a means of having something resembling a normal life, a life free of the constant pain, led down a path of surgeries and other invasive procedures that I think anyone who does not suffer from endometriosis would simply not believe possible. Yet for endo sufferers such treatment is sadly often normal. In spite of all this, Deanna is an advocate. She is an endo ambassador with Endometriosis Australia and the director of Wallis Cinemas, of which she is extremely proud.
The second person I want to mention is Lucy Savage. What a brave, intelligent and passionate young woman you are. For anyone who feels at this point that they do not understand the impact endometriosis is having on women, young and old—but in this case far too young—I urge you to read Lucy's evidence.
The toll endometriosis wrought on what most of us would identify as an entirely normal, though impressive, teenage life was horrific but, strong—as every endo warrior needs to be—she fought her way through the fog of pain and did something extraordinary with her experience. She created a magazine, XOXO, Endo, to help raise awareness amongst young people, the wider community and health professionals because, in her words: “if I could go back in time and speak to the GP who took my symptoms and diagnosed me as an emotional teenager, I would like to give her a copy of my magazine”. Lucy, I hope you sent a copy and I hope they gratefully received it, because you and your story will change lives.
Deanna, Lucy and all who suffer from endometriosis: I am sorry for what life has thrown at you. Thank you for your bravery, passion and advocacy. My hope is that your bravery, combined with the efforts of committees like the one we are reporting on, results in meaningful funding changes that one day—and the sooner the better—bring you and future sufferers a cure, and in the meantime, better treatment and support. To both Deanna and Lucy's mums: I salute you. I salute you and all mums and family members like you who have had to bear witness to your beautiful girls' pain, no doubt often feeling helpless. As a mum myself, I know that in itself would have been an unbearable hardship.
As we have heard in this place already, endometriosis is an issue that affects thousands of South Australians and an issue that for far too long has been ignored, dismissed or misunderstood. We know there is a huge number of people suffering, often in silence. We heard about the simply outrageous timeline for diagnosis: six years or more. Six years of struggle to work or be educated, six years of cancelled plans and six years of struggling to be taken seriously. Six years of physical pain and the emotional toll of being unheard, doubting yourself and being let down by a system that is not working as well as it should.
This is exactly why the parliamentary Select Committee on Endometriosis was formed. This was not just about gathering statistics or looking at medical studies, it was about listening to real people and their experiences. We were asked to investigate, amongst other things, treatment and supports available, barriers to getting a diagnosis and accessing care, how endometriosis affects employment, the education available for young people and health professionals, and what research is currently being done—but more than that, we wanted to give people a platform to be heard. So many people living with endometriosis feel isolated. Their pain is often invisible to the outside world and they are left to struggle through it alone.
The committee invited submissions from anyone with a story to tell or expertise to share, and the response was excellent. We received 85 submissions and heard from 74 witnesses, including individuals living with endometriosis and their family members, health professionals and researchers, advocacy groups, unions and government agencies. We went beyond the city to ensure those in regional communities were heard as well, with hearings in Berri and Mount Gambier. Time and again, what we heard was both devastating and eye-opening.
Like Deanna and Lucy, people told us how hard it is just to get a diagnosis. For years they are brushed off, told their pain is normal, or misdiagnosed with conditions like irritable bowel syndrome or—wait for it—anxiety. When they finally do get diagnosed, they are faced with another battle: actually accessing care. We heard there are simply not enough specialist clinics or treatment options available. Waiting lists are too long and even when people do get in to see a doctor, they are often given bandaid solutions instead of real, lasting care.
The financial toll is enormous. Endometriosis is expensive. Surgery, medications, specialist appointments: none of this is cheap. Many people are forced to cut back on work hours or even quit their jobs altogether because they simply cannot keep up. Sadly, there is a huge gap in education. Young people are not taught enough about endometriosis, which means they may go years without realising that their pain is not normal.
Even many doctors do not have enough training to recognise the symptoms early, leading to delayed diagnoses and inadequate treatment. The system is not working the way it should and the people suffering from endometriosis are the ones paying the price. The good news is we also heard from incredible professionals who, through their own passion and dedication to their patients, and in spite of the barriers, have created meaningful and effective solutions.
The committee has put forward a number of recommendations to improve the way we diagnose, treat and manage endometriosis in South Australia. We need to tackle the long delays in diagnosis. We need to support the professionals already providing dedicated and effective multidisciplinary care, where general practitioners work alongside specialists, nurses and allied health professionals. We need to ensure we provide the framework that enables the sorely needed additional dedicated multidisciplinary endometriosis clinics, particularly in public hospitals.
Workplaces also have a role to play. Policies like reproductive health leave and flexible work arrangements could make a huge difference. Just as important is fostering a workplace culture where people with endometriosis feel supported and understood. We need to invest in research. There is still so much we do not know about endometriosis: what causes it, why it affects some people more severely than others, and what the best treatments are. Continued research in clinical trials will be key to improving outcomes in the future. Ultimately, we want to create a healthcare system where people with endometriosis do not have to wait years for answers, do not have to fight to be taken seriously and do not have to sacrifice their jobs or financial security just to manage their condition.
I want to thank every single person who contributed to this inquiry. To those who shared their personal stories, whether through a submission or by appearing as a witness, your voices have shaped this report. We hear you and we will continue to fight for better outcomes.
I want to thank my determined colleague Catherine Hutchesson, who is herself an endo warrior and who ensured the establishment of this committee. Your dedication and passion for this issue have been invaluable. I also acknowledge all my fellow committee members across the life of this committee. A huge thankyou goes to the parliamentary staff who supported us throughout this process: Alison Meeks, who is our secretary, and Dr Jennefer Bagaporo, our research officer, without whom the work of committees like this would not be possible; and the Hansard team for ensuring every single word was recorded so that these stories can be heard long into the future.
This report is a step in the right direction, but our work is far from over. We must continue to push for better awareness, better health care and better support for those living with endometriosis, because no-one should have to fight this battle alone.