Joanne Ryan (Lalor, Australian Labor Party) Share this | Link to this | Hansard source

by leave—On behalf of the member for Bendigo, I move:

That this House:

(1) notes that:

(a) March is Endometriosis Awareness Month;

(b) endometriosis is a progressive, chronic condition that can start at puberty and continue beyond menopause; and

(c) endometriosis affects one in nine Australian women and girls and approximately 200 million worldwide and can take an unacceptable average of seven years, often with crippling pain, before a diagnosis is made;

(2) acknowledges that the Government is addressing endometriosis at a national level with a significant $58.3 million package for endometriosis and pelvic pain announced in the 2022-23 budget, including:

(a) delivering 22 dedicated endometriosis and pelvic pain clinics around Australia;

(b) access to new Medicare funded MRI scans to assist investigations of infertility for those with severe endometriosis; and

(c) developing an endometriosis management plan, and other measures to better support those affected with endometriosis; and

(3) congratulates the many endometriosis patients, their families, organisations and health sector leaders for their continued advocacy on endometriosis awareness and education.

It is Endometriosis Awareness Month, and I want to formally thank the member for Bendigo for bringing this motion to the House to give us an opportunity to highlight not just the issues but also some of the history around this House's approach to endometriosis and to go through, in some detail, the response from the Albanese Labor government.

Let me first pay tribute to a former member for Canberra Gai Brodtmann and the work that she did—often in partnership with the member for Maranoa, who was representing the opposition—to raise awareness in this federal parliament about the impact of endometriosis. Now, thanks to their work, we all know that it takes a huge toll in terms of not just the mental and physical health but also the quality of life for women who suffer from endometriosis. It is a highly individualised disease, and the symptoms and impacts range significantly from person to person. But it's estimated that endometriosis affects at least one in nine Australian women and has an extensive, devastating impact on the daily lives of sufferers, with people experiencing an unacceptable average wait of seven years before diagnosis. Their pain can be similarly complex and debilitating. Research has also shown that one in two Australian women experience pelvic pain and that half of those women do not discuss their symptoms with their doctor, despite significant impacts on work or study.

I have been in this place for 10 years, and I'm finally a member of a government that has not just a commitment to gender equity but also a laserlike focus on gender equity and gender data in our health system.

I want to mention the National Women's Health Summit that occurred last week, on 14 March, led by the Assistant Minister for Health and Ageing, the member for Cooper, Ged Kearney. The National Women's Health Summit came about because there was an advisory council on women's health to raise issues. It wasn't just about endometriosis but about the way women are experiencing our health system and the sector, so we can get clearer data about the way our health system is responding to women's health issues. Endometriosis is like a microcosm of that; as this motion says, women are going for seven years before diagnosis. I know we've heard these stories time and time again in this place, but the fact of the matter is that waiting seven years for that diagnosis can mean that women have missed a significant amount of work or have given up employment because of the guilt they feel about not being able to go to work every day, not knowing when it's going to strike or when the pain is going to be so bad that they can't present for work.

So this is incredibly important and the government's response to this is incredibly important. As the motion says, it:

… acknowledges that the Government is addressing endometriosis at a national level with a significant $58.3 million package for endometriosis and pelvic pain announced in the 2022-23 budget, including:

(a) delivering 22 dedicated endometriosis and pelvic pain clinics around Australia; …

The importance of these clinics is quite simple. They bring into an existing practice considerable expertise in this specific area. Rather than women going to their GP or hunting around the country for a GP that understands their condition, they can now identify a clinic to attend. Even with only 22 around the country, that's 22 more than there were when we took office. Women know there's a clinic where the expertise will be available to them. They can walk in, as a patient, and know that they're going to talk to somebody who's informed, who has been involved in the research and who has the practice capacity to diagnose them and ensure that they're getting the support they need. We've also given access to new Medicare funded MRI scans to assist investigations for infertility for those with severe endometriosis. And we're developing an endometriosis management plan and other measures to better support those affected with endometriosis.

I want to congratulate the many endometriosis patients, their families, organisations and health sector leaders for their continued advocacy on endometriosis awareness and education. I say to women in my electorate—young or middle aged—that it's time to take this disease seriously. Get yourselves to the clinics in Melbourne and make sure that you're getting you're getting a diagnosis and your treatment.

Terry Young (Longman, Liberal National Party) Share this | Link to this | Hansard source

Is the motion seconded?

Cassandra Fernando (Holt, Australian Labor Party) Share this | Link to this | Hansard source

I second the motion.

Melissa McIntosh (Lindsay, Liberal Party, Shadow Minister for Energy Affordability) Share this | Link to this | Hansard source

The personal stories of endometriosis have helped this place get a better understanding of it and to really fight for more funding. Those stories go from the pain which impacts people's lives, both personally and in their working lives—that feeling of just needing to suffer through it—to fertility issues and, in the case of some, life-threatening issues. I'd like to acknowledge the member for Forrest for bringing this and her own personal experiences to this place so that we can have a greater understanding through the work she has done through her own family's experiences. This place is all the better for the advocacy of people like the member for Forrest and also the former member for Boothby and others. They have not stood back quietly, even though this has been a quiet issue traditionally. It has been very much front and centre in this place. I want to thank the member for Bendigo as well for leading the Parliamentary Friends of Endometriosis Awareness along with the member for Forrest.

One in nine women lives with endometriosis. It often begins to affect young women in their teenage years and the condition impacts around 200 million women worldwide. Approximately half of endometriosis cases will be challenged with fertility issues before a formal diagnosis is made. And, as has been said already, it can take around seven years for a diagnosis—and all the while, the woman is in pain. Many young women don't understand that the extreme pain is not normal and that they should seek help. Unfortunately, the direct causes of endometriosis are still not known and, whilst we work towards further understanding endo—particularly the cause, treatment and a cure—awareness is key. It isn't an issue that should be kept in the shadows at all, and we need to keep having those conversations. Education is an important piece in the health space. Providing talks and information to young women about looking out for signs and speaking with a GP is critical to ensuring that they get help early on.

Again, personal experiences are key to understanding the impact it has on so many women's lives, both here in Australia and around the world. It is a debilitating condition, and there are much-needed advancements in the medical industry that need to take place to ensure diagnosis and adequate support is provided to all women with endometriosis. The coalition is pleased to see the government commit to funding our party's policy package of $58 million for endo and pelvic pain. However, we are concerned that the government's approach is only providing a limited boost to the current existing services. Investment is vital for women's health across the country. There are so many women, particularly in our outer urban areas, and in regional and remote areas, who are impacted by geography, unable to afford treatment and continue to suffer. There are so many out-of-pocket costs associated with endometriosis for women, and this is before they are even diagnosed. Procedures for diagnosis, check-ups and treatment can be invasive for many women. The coalition's commitment was the largest investment in endometriosis treatment and research in Australia and, once again, I'd like to commend the member for Forrest for the work she did in ensuring this.

Furthermore, the former coalition government invested a record $353.9 million in the 2021-22 budget to support women's health. This included funding for research to find a cure for endometriosis and to support women experiencing this often hereditary disease. Specialised women's pain clinics, which are being built in every state and territory, were introduced by the coalition in 2022. Women's pain clinics have experts, which are extremely important for women suffering this condition.

A division having been called in the House of Representatives—

Sitting suspended from 12:32 to 12:44

As I was saying, the coalition continues to commit deeply to supporting awareness, education and much-needed research to find a cure for this debilitating condition that so many women face.

In closing, I want to thank every woman who continues to advocate for better services for those experiencing endometriosis. Your experience has been heard and we are grateful for it. We are working on ensuring a better future for young women who will be diagnosed with endometriosis in the years to come.

Susan Templeman (Macquarie, Australian Labor Party) Share this | Link to this | Hansard source

I asked my daughter if she had any words she'd like me to share with the parliament today when I spoke about endometriosis. She texted me back this morning and said: 'Endometriosis is in the too-hard basket for most doctors. Not once has a doctor explained the state of my body in such a way that I could explain it back to you. I don't know how damaged I am, I just quietly live with pain. Often, it's been the discussions with my female friends where I've learned the most about my diagnosis. We sit together and compare the breadcrumbs of advice and information we've each received from our doctors. We compare surgeries and pain remedies, but even between us it's frowned upon to talk about the pain too much. We all have the pain, but how sad is that?' That really does sum up what women across my community have told me about their experiences of living with endometriosis and pelvic pain. As we mark Endometriosis Awareness Month, I want to say thank you to the sufferers, their families and the advocates who have not stopped pushing for greater support, awareness, education and treatment about endo.

Endo is a progressive chronic condition that starts at puberty and can continue beyond menopause. On average, it takes seven years to be diagnosed and treated for endometriosis. Women are told that heavy periods are normal and that the extreme pain they are enduring is just part of being a woman. This process has left many distressed, frustrated and, sadly, has caused some women to lose trust in our healthcare system. Research has also shown that one in nine Australian women suffer endo, while one in two experience pelvic pain and that half of those women don't discuss the symptoms with a doctor. That's why I'm proud to be part of a government that's taking action so that endometriosis sufferers don't have to tough it out alone.

At the start of this month, I welcomed the Assistant Minister for Health and Aged Care, Ged Kearney, to the Blue Mountains to mark International Women's Day with a health forum. We put gender bias in our healthcare system under the microscope. We were joined by women of all ages from across the electorate, including the Blue Mountains Women's Health & Resource Centre, to hear firsthand from women about their experiences accessing the support that they need for endo and many other conditions. I'm thankful to the many women who took the time to share their deeply personal stories, including on the debilitating and often silent impact of endometriosis. I know that being part of this government means we'll continue to work towards ensuring practical steps to combat medical misogyny and to better support women through their journey to diagnosis and treatment.

When it comes to battling endo, in its last budget the Albanese government included a $58.3 million package which covered a Medicare MRI item for investigating infertility related to endometriosis, the development of an endometriosis management plan and the establishment of 22 dedicated endometriosis and pelvic pain clinics across the country. I'm very pleased that we now have one of these officially open in Western Sydney. It opened just three weeks ago at the Rouse Hill Town Medical & Dental Centre. Last week, I caught up with Simon Taylor-Cross and Dr Sneha Wadhwani, who is the Evoca Women's Health clinical director at Rouse Hill, to talk more about the clinic and what they've seen in the first few weeks of operation. While the clinic is in its early days, they've welcomed women from right across Western Sydney, including from the hills of the Hawkesbury. They've all gone there to meet with a team of people with expertise and knowledge. They're seeing women at different stages of their journey, with some in their early teens through to women in their mid-50s. Some are women who've had disappointing medical experiences previously and some have had surgery, while for others it has been their first serious discussion about endo. I'm so grateful that they will get a good start to that journey.

What's key at these clinics is the multidisciplinary approach, with nurse practitioners, GPs specialising in endo and pelvic pain, physios and other allied health professionals all geared to a holistic response. I'm sure for many women this will have been the first time in their lives that someone has listened to them explain their experience with debilitating pain from endo and believed them.

It was heartening to hear the clinic's unwavering commitment to delivering sensitive, understanding and transparent care for patients from the beginning, with every single staff member having had specialist training by the Pelvic Pain Foundation Australia. I hope this will be a place where women get the best experience in this terrible condition.

Nola Marino (Forrest, Liberal Party, Shadow Assistant Minister for Education) Share this | Link to this | Hansard source

As the co-convener of the Parliamentary Friends of Endometriosis Awareness with the member for Bendigo, we work to raise and increase awareness of endometriosis in this House, in the communities and wherever we possibly can.

I want to acknowledge the suffering, crippling pain and impacts on the lives of the one in nine women—recent research shows it could be as low as one in seven women, so the prevalence is increasing—that advocates are now saying are suffering from endometriosis. I understand that the rate of hospitalisation has doubled amongst women aged 20 to 24 in the last decade. As we know, it is a progressive and chronic condition for which there is currently no cure.

I want to acknowledge my colleagues the member for Boothby and the member for Canberra who worked closely with the coalition government to develop and introduce the first ever National Action Plan For Endometriosis, with record funding directed to improve diagnosis and primary care support to help more women find appropriate care and better manage the impact of endo on their lives, on their families, and on their social, work and study lives.

In that 2022-23 budget, the coalition announced funding for 22 new specialised endo and pelvic pain clinics in every state and territory. This commitment was the largest ever investment in endometriosis treatment and research in Australia. I'm pleased that the Labor government has continued with this policy and have introduced the pelvic pain clinics, but you can understand that I'm desperately disappointed and frustrated and hurt for the women in my electorate that there is not one in the south-west of WA, one of the fastest growing regions in Australia.

I've previously shared my daughter's very personal endo experience, and I'm constantly approached by women who are doing their best to live with endo every day. I have the greatest respect for the courage and the determination of the women who literally live and work with endo every single day, with the excruciating pain—with the lower back and abdominal pain, the exhaustion, the bloating and the nausea, and, far too often, the fertility problems.

Recently, I heard from an amazing young woman, Brooke Gibson, who lives in Busselton. She's overcome so much in her endo journey but has refused to let the debilitating effects stop her from being a proud member of the Souwest Jets team, playing in Western Australia's netball league. She's also studying to become an occupational therapist. But she's grappled with endometriosis. It took her many years to receive a definite diagnosis. Unfortunately, this is not uncommon. It's often seven, ten, or more years, during which time the damage caused is well advanced and sometimes irreversible when the actual diagnosis is made. Brooke says her greatest struggle was with the health professionals who simply did not understand endo or had not been educated to diagnose endo.

In my first speech in the parliament on endo, I asked every GP and health professional to please take these young women seriously. I know it can be difficult to diagnose, but, for goodness sake, I asked them, 'Can you please take these young women seriously or send them to an experienced gynaecologist who actually specialises in endometriosis?' Brooke is just one of the young women who would have benefited from a dedicated pelvic pain clinic in the south-west of WA. There is absolutely no doubt that the struggle to access or receive accessible treatment and care is much more challenging and often impossible in regional and remote parts of Australia.

I just want to give a special shout-out to every young woman with endometriosis and mature-age woman who has realised later in life that she has endometriosis. The clinics themselves need to really be able to deliver. I want to see much more pelvic pain education in schools so that our young women know what is not normal and when to seek and get the help that they need early in their lives so that they don't have to suffer in the way that so many others before them and right now are suffering.

As I said, our regional Australians, our women in regional and remote parts of Australia, are already facing additional and significant challenges in accessing medical and health services and support. It is no different with endometriosis. In fact, it's far worse. So these areas actually should be prioritised. They don't have all of the services that are often available in cities and outer-metro areas. They are much more isolated. So I'm going to ask the government to, please, prioritise those regions outside of Sydney for pelvic pain clinics.

Gordon Reid (Robertson, Australian Labor Party) Share this | Link to this | Hansard source

I thank all the members who have contributed to this really important topic today, especially the members for Lalor and Bendigo for moving the motion but also a member that's not in the chamber at the moment, Matt Burnell, the member for Spence, who has been a tireless advocate for those suffering from endometriosis. Thank you for all of the work that you do. Thank you to all of the members in the chamber who get behind those patients and those family members who are suffering from endometriosis.

What I am going to do today is go through a little bit about what endometriosis is, some of the clinical features and management, the treatment of it and then how the government is responding to endometriosis. As a doctor, I'm going to take the avenue of some of the patients that I have seen with endometriosis and how it can present and also some of the less common presenting signs and symptoms that some people who are listening at home might not be aware of.

Endometriosis is defined as endometrial glands and stroma that occur outside the uterine cavity. These endometrial lesions are typically located within the pelvis but can also occur in other parts of the body. They can occur in places like the bowel, the diaphragm and the pleural cavity, which is the bit that lines the lungs. They can cause symptoms that range quite significantly and can be very, very severe and debilitating for women who are suffering from endometriosis.

Classically, women will present during their reproductive years with symptoms including pelvic pain, dysmenorrhea, dyspareunia, infertility and ovarian masses.

A division having been called in the House of Representatives—

Sitting suspended from 12:57 to 13:33

As I was saying, endometriosis has a peak prevalence occurring particularly in those aged 25 to 35. However, it has been reported clinically in premenarchal girls and also in postmenopausal females. Really, this is a disease which affects women right across the lifespan—especially with some of those other symptoms I was talking about.

Some of the common symptoms of endometriosis that have been reported include things like chronic abdominal and pelvic pain; bloating and pressure; severe dysmenorrhoea and dyspareunia; heavy menstrual bleeding; and infertility. These are just some of them, but there are additional symptoms if the endometrial lesions affect areas outside the pelvis. If they're affecting the bowel then we have bowel and bladder dysfunction—think of pain, urgency and frequency in urination; abnormal uterine bleeding, lower back pain and chronic fatigue, just to name a few. The constellation of symptoms that can occur with endometriosis is vast and affects every patient differently.

I'll just go through some of those. Dyspareunia can suggest the presence of deep endometrial lesions or peritoneal lesions. We think of the urinary symptoms that I was just describing. That can suggest bladder endometriosis. Diarrhoea, constipation and abdominal cramping can suggest bowel lesions. Abdominal pain can result from endometrial lesions in one of the less common sites, the abdominal wall. These are some of the rarer ones. The endometrial lesions can actually affect the thorax or chest cavity, causing things like recurrent chest pain, haemoptysis or the coughing up of blood and also pneumothorax, in which the lung can collapse and cause significant respiratory distress in patients. This isn't a disease that affects one part of the body; it can affect multiple parts of the body, and that's why early diagnosis and management of this condition is absolutely vital so that women are able to live healthy and productive lives.

Going into general principles of the treatment and management, that can include things that maximise medical treatment but also minimise the need for recurrent surgical intervention. Each treatment plan definitely needs to take into account the clinical presentation and severity of symptoms of all patients.

A division having been called in the House of Representatives—

Sitting suspended from 13:36 to 13: 46

I would like to acknowledge that the government is addressing endometriosis at a national level, with a significant investment, a $58 million package for endometriosis and pelvic pain which was announced in the 2022-23 budget, including funding for dedicated clinics, MRI scanners and assisting patients with endometriosis. The

Jenny Ware (Hughes, Liberal Party) Share this | Link to this | Hansard source

I rise to speak on this motion on endometriosis and thank the honourable members for Bendigo and Lalor for bringing this motion before the House. I also thank the member for Robertson, who has spoken so well on the medical issues around endometriosis, and the member for Forrest, who has been a co-chair of the Parliamentary Friends of Endometriosis Awareness for many years, as well as all the other members who have spoken and will be speaking on this important issue.

This is a matter of profound importance to women's health and wellbeing. It's a condition where tissue similar to the endometrium, or lining of the uterus, grows outside of the uterus. It's often under-recognised and not diagnosed. It's a chronic condition that affects a staggering one in nine women in Australia and approximately 200 million women worldwide. The symptoms often emerge during teenage years. A laparoscopy is the only way to confirm that endometrial tissue is present.

Yet, despite its prevalence, the causes of endometriosis remain elusive, and the journey to diagnosis is far too often fraught with delays, averaging around seven years. Endometriosis is not just about menstrual pain; it's about a pervasive, debilitating condition that can severely impact a woman's life. Half of those living with endometriosis will also have fertility challenges before a diagnosis is made. It has been described as pelvic cramps akin to labour pains—throbbing, gnawing and dragging pain, often extending down into the legs. Its toll extends beyond physical suffering to financial burden, with an annual cost to Australian society of around $9.7 billion per year, primarily attributed to lost productivity, as well as $2.5 billion in direct healthcare costs.

Recognising the gravity of this issue, the coalition has been at the forefront, when in government, of addressing endometriosis. In 2018, it launched the National Action Plan for Endometriosis, which provided a crucial blueprint for action. We have supported and welcomed the decisions of the Albanese government to uphold the coalition government's former budget measures, including$16.4 million for the establishment of endometrial and pelvic pain GP clinics in primary care settings throughout the country.

We also welcome the government's decision to maintain the former coalition government's commitment to invest $25 million in a new MBS item for pelvic MRI scans. We know this is such an important issue and such an important investment for women across the country who need better access to this critical support. Access to resources and informed healthcare choices are paramount for women battling endometriosis. We must equip both patients and healthcare providers with the necessary tools and guidance to navigate this complex condition effectively. In particular, more work needs to be done—particularly with the education of GPs. As we observe Endometriosis Awareness Month this March, let us recognise the pivotal role played by organisations like Endometriosis Australia. Its tireless efforts in research, advocacy and support are invaluable in easing the burden carried by those enduring the challenge of endometriosis, and I note that it recently launched an excellent podcast called Living with Endo.

In closing, let it be known that the coalition remains steadfast in its commitment to improving the lives of Australian women and girls affected by endometriosis. We will do this in a bipartisan way; health should be way above politics. Together, let us continue to raise awareness, drive research and provide unwavering support to alleviate the burden of this debilitating condition. I take this opportunity to acknowledge particularly the tenacity and courage of Australian girls and women suffering and living with endometriosis every day. My sister Jacqui and my friend Jess are still playing sport, working, studying, caring for children and caring for parents. I say to them that we'll continue to approach this debilitating medical condition in a bipartisan way to bring about better treatments and, hopefully—finally—a cure. Thank you.

Sharon Claydon (Newcastle, Australian Labor Party) Share this | Link to this | Hansard source

I rise to support this motion moved by the member for Lalor on behalf of the member for Bendigo. I thank them both for bringing this important issue up for debate in this parliament. I also want to acknowledge the work of the member for Forrest as co-chair of the Parliamentary Friends of Endometriosis Awareness.

For centuries, women around the world have suffered from severe and debilitating pelvic pain month after month, year after year, often being misdiagnosed, ignored, or indeed not believed at all. They've been told, 'It's all in your head,' or, 'It's just part of being a woman,' or, 'It's just the family curse.' They have suffered in silence as a result. Most severe pelvic pain is endometriosis. It isn't just bad period pain, but too often it's been dismissed as such. Endometriosis is a debilitating disease where tissue lining grows outside the womb and can grow into other parts of the body, including bowel and bladder. It has even been found in the skin, joints, lungs and brain. It can cause unbearable pain and problems with a woman's fertility. Many women experience heavy bleeding, pain with bowel motions, painful intercourse, nausea and vomiting. And it affects women in all aspects of life, including schooling, work, sport, relationships and mental health.

A division having been called in the House of Representatives—

Sitting suspended from 13:54 to 14:05

It is indiscriminate and it affects at least one in nine women of all ages and races and every socioeconomic status. There is no known cause, no cure and no preventive medicine, and the disease can take, on average, seven years to be diagnosed. That's a very long time for a woman to be in pain, without a diagnosis and accurate treatment. Until recently, there was very little understanding of endometriosis or pelvic pain in the medical community. In 2021-22, there were 40,500 endometriosis related hospitalisations in Australia, 82 per cent of which were women aged between 15 and 44. That's 18 out of every 1,000 women in this age group being hospitalised for endometriosis or related conditions.

The Labor Party are a party of women, and endometriosis is a women's issue that we take very seriously. We are taking practical steps to improve diagnosis and treatment, and in the last budget we included a $58.3 million package for endometriosis and pelvic pain. We're supporting endometriosis research, creating awareness in the community, supporting medical professionals with best-practice guidelines and information for treating patients, and developing an endometriosis management plan that can be tailored to individual experiences.

Significantly, as committed, the government has now completed the rollout of 22 dedicated endometriosis and pelvic pain clinics across Australia, where women are listened to, believed and holistically supported in their journey to be pain free. There are now clinics in every state and territory that are supported by specialised GPs and professionals with experience in women's health and endometriosis. In my electorate of Newcastle, there is a demand for specialised endometriosis and pelvic pain services. I'm pleased that, through the funding this government has provided, we are working closely with our local public primary health network to support doctors in best-practice diagnostics, care and treatment and to better inform the community of this serious issue.

This is great news for the women of Newcastle, and I would like to acknowledge the work and advocacy of Newcastle councillor Peta Winney-Baartz. I'd also like to acknowledge Professor Pradeep Tanwar and his team, who, in their work with the University of Newcastle and the Hunter Medical Research Institute, are developing non-invasive treatments and early diagnostic tools that better treat and detect endometriosis and pelvic pain. I also want to acknowledge the work of Endometriosis Australia, who are great at raising awareness, pursuing advocacy and providing great resources and information.

I call on the House to support this motion. It's an important motion before us today, and I again thank both the member for Bendigo and the member for Lalor, and the work of the member for Forrest, for bringing this forward. This should be a multiparty supported motion. The women of Newcastle, Australia and, indeed, the world deserve to live pain free.

Karen Andrews (McPherson, Liberal Party) Share this | Link to this | Hansard source

There being no further speakers, the debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.