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House of Assembly - Fifty-Fifth Parliament, First Session (55-1)
2024-03-21 Daily Xml
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Motions

Endometriosis

Debate resumed.

Ms PRATT (Frome) (11:12): I rise to speak in full support of the motion that is before us today. I thank the member for Waite for bringing this opportunity to the house. I would like to start my comments by welcoming our guests to the chamber. As the member says, the member for Waite recognises you as our endo sisters, so thank you for your time, thank you for your journey and your experience and, hopefully, your submissions to the select committee as we make our way through that.

I know that in his absence I speak also for the member for Unley, and the opposition more broadly, in supporting this important motion. The motion calls on the house to establish a select committee into endometriosis to inquire and report on a number of elements that I think, in conversation today, will expand on understanding that there is much yet to be understood about this disease and how it impacts women from a very young age to, as the member points out, often up to 40 years of our life. It is a long time to be living with those conditions.

On average, it takes 6½ years to be diagnosed. For women who are reflecting on their own personal health at least monthly, or trying to get on without their health being a distraction, the frustration for us is the misunderstanding, the misdiagnosis and the time that is lost in seeking that diagnosis. We understand what is happening to our bodies, but end up doctor shopping, or trying to impress upon GPs and experts in the health sector exactly what is happening to us and having that doubted or questioned, finding that as the expert on your own body you are not being believed and you have to go further to convince a practitioner what is happening to you.

I think that the committee is going to give the South Australian parliament a very important platform, voice and opportunity to investigate and hear submissions about research that strengthen the house's position to report back to health practitioners and to women who perhaps have not had an opportunity to fully understand what is happening to their own bodies, when some of the symptoms can present as back pain or period pain that everyone else is experiencing and is normal. How do we test that against someone else's experience when it is so unique?

I note that in the federal parliament a number of politicians at the time understood the importance of research in this space. We saw the establishment of the Parliamentary Friends of Endometriosis, creating awareness with speeches in the house at the time from the member for Canberra, Gai Brodtmann; the member for Forrest, Nola Marino; the member for Boothby, Nicolle Flint; and other honourable members who were very committed to advocacy, building awareness and bringing public attention, because that is the platform that we have as politicians.

It would not be a surprise to those who are here today that the former member for Boothby Nicolle Flint continues to take every opportunity to report on her own experience of living with stage 4 endometriosis. For those women who are living with endometriosis at any stage, I applaud your courage, your bravery and that roll-out-of-bed attitude, knowing that you are experiencing something that is silent and invisible.

To make reference to a comment that Nicolle Flint made about this, endometriosis is literally everywhere, impacting so many women. We need the facts, the symptoms, the treatment, the research, the support, and the stories of hope, recovery and resilience to be everywhere too. I think that the opportunity the member for Waite brings the chamber through this select committee definitely gives us an opportunity.

We know that endo is painful, we know it is misdiagnosed and we know it is misunderstood. Frustratingly, for many the only pathway to truly prove that you are living with endometriosis is surgery, and it might not be once or twice but multiple attempts, at cost and great intrusion.

Certainly, we have a million girls and women who in their lifetime will live with endometriosis in various stages. Whether it is diagnosed or not, the impact is real every single day. Whether its impact is to your schooling as a young adult, with days lost from study to have to manage the pain, or whether that impact, as we will discover, is in the workplace, it can present in many ways. It might not just be the pain management but the events that you are missing out on, those special family moments.

Having those conversations with people in your workplace and line managers, whether they be female or male, can be embarrassing; they can be awkward. For those who have not had that experience, the level of ignorance may translate as a lack of compassion or understanding. The effort that a person has to go to just to have that conversation to negotiate a more flexible workplace or understanding takes its toll, I am sure.

The committee is going to grasp an opportunity to explore how we can support women living with endo who still expect to have a wholesome, fulsome family, sporting, study and professional life while not having to beg and plead for knowledge or understanding in the workplace and to have to explain every day what they are going through. Let the language flow, let the embarrassment and stigma cease, let the research and the findings that might come from our select committee inform South Australia in a way that I am sure the findings of the parliamentary committee in Canberra have also done.

In my electorate of Frome, I am often contacted by my own constituents who want to see more conversation in the public space about women's health. From a very young age our bodies change, and particularly for women like me in their 40s, whether they have had children or not, it is imperative that parliament leads the way and sets the standard for mainstream media to normalise the language around women's health and that we are not hesitant, ashamed, embarrassed or silenced to talk about infertility choices and about having children. Certainly our bodies change approaching perimenopause, menopause and, of course, the impact of endometriosis.

I began my remarks by welcoming our guests and sharing back with you the brave and courageous pathway that you have all trodden. The opposition supports the motion to establish this select committee and we thank the member for Waite for bringing this to the chamber.

The Hon. L.W.K. BIGNELL (Mawson) (11:21): I rise also to support this motion and thank the member for Waite for bringing it to the house to establish a committee that I will be most pleased to be on. I look forward to being on the committee if that is the will of the house. I want to thank all of those who have come in to the gallery today for all the advocacy that you have shown over many years.

I must admit to not knowing a lot about endo, being fortunate enough to not have people in my immediate family who have suffered from this. Of course, I am very well aware that some women have much more painful periods than others. It was not until five or six years ago when I heard a couple of people talking about it publicly that I became aware of it. Bridget Hustwaite on Hack on triple j was talking about her experience and that made me appreciate what it was all about. I felt a bit bad that I did not know more about endo.

Jen Boyce, the bass player from Ball Park Music, was also out there advocating for women to talk about it and talk about it in a medical environment, explaining to your GP what it is you have and making sure that those people believed in the women who were telling them about the pain. I thought if the people in the medical fraternity do not all know about it, then it probably is not that surprising that a few of us blokes do not know all about it either. I want to thank Jen, who I met a few years ago and took around McLaren Vale with the rest of the band. We talked about it then. It was great to have these people in the public realm speak about their experience and advocate on behalf of other endo sufferers.

It is a reminder to people in public life that if you have strong views on something, do not be afraid to speak up because you will probably be educating thousands and thousands of people who, through often no fault of their own, are ignorant of the circumstances and what people are going through. You cannot be compassionate and show empathy towards people if you do not understand what it is they are going through.

Hopefully, through this parliamentary inquiry we, the men and women who are putting up their hands to be on the committee, and the broader parliament will shine a light on it, will make people feel more comfortable talking about something that maybe people have not talked about over previous generations. Once again, I would like to thank all those people who have come into the gallery today. I would like to thank the member for Waite for bringing this motion to the house, and everyone who supports it, including those who are going to put up their hand to be on the committee.

Mr TELFER (Flinders) (11:25): I also rise in support of this important motion and I commend the member for Waite. We spend a bit of time in this place doing stuff which is unimportant, it feels, but this is something that is obviously so very important to so many people in our community.

Can I recognise, as other speakers have as well, the gallery that is full in recognition of something that is really a silent and debilitating disease which you would not be able to understand until you are in the midst of it. It is something which I know my office has been very proactive in trying to find a way to be able to help the community, medical professionals and individuals around the state understand what it means to suffer with endometriosis.

I know that this motion is broad but I think it is really important that the different aspects that this committee will start to unpack are fully understood, in particular, not just the number of women in South Australia who suffer but also the barriers to getting a diagnosis and the current treatments that are available. As we have already heard, to get a diagnosis for endometriosis involves surgery, and that in itself is something that is daunting and often a last resort for people.

I want to share the story of a daughter of a constituent of mine, a constituent in her own right, who has been facing exactly this and was eventually diagnosed with stage 4 endometriosis. Her story would reflect so many stories from around South Australia where for so many years she was silent and she thought the pain she experienced through her monthly cycle was normal, because everyone experiences pain differently and it is hard to understand if this is something abnormal.

She had multiple visits, month on month, year on year to medical professionals trying to get an answer to this debilitating pain that she was facing and, as with so many other cases, probably misdiagnosis. Is it something that is dietary, is it something that has other causes, until finally you take that step to have that surgery and get that diagnosis.

Unfortunately, because of a lack of awareness of endometriosis through many years, a lot of these cases advance to a point where it actually starts to affect the other organs in the body and we see the detrimental effect. I am so pleased that in recent years there has been a greater awareness within the community and amongst medical professionals of this debilitating disease because it does give the opportunity to be able to have it perhaps as an early thought of a diagnosis rather than an afterthought.

I believe that the work this committee is going to do will shine a light on what potential research and treatments could be developed to, in the future, provide a better way for that diagnosis and that treatment. The story that I am sharing is a sad one because for over a decade this constituent, this friend of mine, faced this disease without knowing it, and faced it in silence within her family. The complications from her disease reached a point where she was at risk of losing her bowel.

As I said, the impact that has on other organs in the body can be significant and permanent. Having a committee in place here in South Australia's parliament can be a small step in the right direction to give sufferers of endometriosis and their families a voice, and have their perspective heard when it comes to making policies.

Also an important aspect, and one which is certainly, as I said, a passion of the staff in my office, is awareness and education for young girls who do not need to feel alone in their circumstances. Girls can gain an understanding of endometriosis through it being included in the health and wellbeing curriculum of years 9, 10 and 11 in secondary school, so that it be part of normal life as to what they might expect to face instead of having to face it in silence. As I said, I am very pleased to stand in support of this committee, and I am looking forward to the work that this committee can do to support such a large proportion of our population, as has already been mentioned by the member for Waite.

As the father of three girls, I am someone who is passionate about making sure that we support our young girls in their early years and through their whole life. To have a society that is able to support each other and provide that support for each other is really important, and this is something that has been faced by too many of our people for too long without that level of support. So I once again commend the member for Waite for putting forward this committee and I look forward to the work that it puts out.

Ms WORTLEY (Torrens) (11:31): I would like to congratulate the member for Waite for bringing this particular issue of endometriosis to this parliament and also thank the people in the gallery today who I know are here in support, not just of the select committee looking into it but of all women and families who suffer as a result of endometriosis.

As a young teenager, I was told by numerous GPs that the excruciating pain I experienced each month was really just a part of being a woman. It was not until a number of years later, and many visits to a GP, that I found out that it was not normal and that it was not just part of being a woman. In fact, my younger sister was diagnosed with endometriosis. She was asked by the specialist if her sisters had been diagnosed with the same condition, and she said no. When she came to me, we had a discussion, and so I made an appointment with the GP and requested to go to a specialist. As a result, I had laparoscopic surgery to remove scar tissue from endometriosis that was caused through the condition.

I have to say that throughout my teenage years at high school, and even at uni, women would just talk about it as though, 'It's just something we have to put up with,' not knowing that this excruciating, debilitating pain was not a normal part of being a woman and that it was not something that we should just expect each month. I was fortunate enough after many years to be able to conceive and have a child, and I have a beautiful boy today, but I know that many women are not that lucky. Again, I thank the member for Waite for bringing this select committee and I look forward to participating on it.

Mr TEAGUE (Heysen) (11:33): I, too, join in supporting the motion of the member for Waite. I commend the member for Waite for bringing it to the house, and I thank you one and all, those who have come to fill the gallery this morning to support the motion and, I understand, to gather here in the building at the conclusion of this debate.

There is work to be done by the committee and, should the motion be successful, the terms of reference for the inquiry are wide-ranging and cover that range of subject matter that we all know is important to continue to learn more about, to shed more light on and to work towards improvement, as the member for Flinders has said, and others, in the course of the debate. We know that it has been a difficult matter in terms of even raising its existence over the long journey, and then actually charting a course from diagnosis through to addressing endometriosis is not an easy one. We all have friends and family, those we hear about in the course of our work, who have tackled that in their own way. One thing that is clear is that we ought to be applying all the resources we can to ensuring improvement.

I take the chance to highlight the extraordinary advocacy work of just one individual who I have been fortunate to know in recent years, and that is an extraordinarily accomplished young woman by the name of Holly Cooke. Holly will be known to many of us. Holly is an endo champion. She is now well advanced in her university studies. When she was in year 12 at school, she initiated an initiative for girls aged 15 to 18 called Girls Talk and used that, as then a young woman navigating her own experience, as a means of spreading awareness and really raising the difficulty of struggling with endometriosis.

Having had that experience as a schoolgirl, Holly continued to be an advocate in local and national media of all kinds. In a particular moment of achievement—and again I applaud the capacity of an individual who is willing to be able to get out and speak publicly on these matters—Holly went on the Q+A program on national television. As a participant in a broader conversation as a student panellist on youth engagement in public matters, she really took that advocacy to the national media spotlight.

Holly's achievements continued. She has been an outstanding earth sciences student and is going to, I think, do our state, our nation and the world great service on the geology side over the journey. I will look forward to admiring her achievements going forward. She is just one who I think ought to be saluted in the course of recognising the work ahead.

I hope the inquiry, should it be supported and established here, will draw on experiences far and wide. I hope that the outcome of its work will be to contribute something strongly for our local communities and I hope more broadly throughout the country as well. Again, I thank the member for Waite for bringing this motion to the house, and I commend it to the house.

The Hon. G.G. BROCK (Stuart—Minister for Local Government, Minister for Regional Roads, Minister for Veterans Affairs) (11:38): I would like to speak on this issue and thank the member for Waite for bringing it to the attention of this chamber here. I am very grateful that we have lots of speakers here in agreeance with the opportunity to have a select committee.

As the member for Mawson has indicated, as a male, I am not aware of lots of the issues that women go through. It is very ignorant sometimes of perhaps other males that we may not know about that. As the member for Flinders has indicated, he is a father of three girls. I am the father of two girls. What I have been able to learn is that some women are very reluctant to talk about personal issues. I quite frankly admit that I do not know a lot of the issues that women go through.

I will use an example: my late wife, years ago—this is a long time ago. We had the unfortunate experience of having a couple of miscarriages. She suffered from tremendous pain—tremendous pain. We thought it was just the normal period pain. We were very fortunate; we had two children after that, and we have grandchildren, granddaughters. But in hindsight, my late wife, Arlene, may have had endo, because she was absolutely bedridden for days with very, very bad pains.

I thank the gallery here for coming in today. It is great to see the support. I will mention that since my involvement with the Wallis family, which has been over the last few years, I have learnt a lot from the Wallis family, and also Deanna. In conversations, she has opened up about some of the challenges that she has had in her life. I asked her if it is alright if I mention her name, and she is quite okay with this.

As a male—and I am only speaking from my own point of view—I am learning a lot more about issues out there confronting not only men but also, very particularly, women. We as humans do not always feel like we want to be able to discuss some of the challenges we are having, whether it is a personal issue, whether it is a medical issue or whatever it may be. Coming back to the member for Waite and the member for Torrens, for women who are having this issue, their lives are not fulfilled for various reasons: the social engagements, sporting engagements and working engagements that they cannot do.

I am very flattered that we will have what I think appears to be the full support of this chamber here for this select committee. I am looking forward to doing whatever I can—not only as a minister but also as a member of parliament and also an opportunist in my own electorate and my own areas—to be able to help people like Deanna and others who are out there suffering from this but not bringing it into the public domain.

To the member for Waite: congratulations for bringing this. Thank you very much, from a personal point of view, to others speaking in favour of this motion by the member for Waite. I am looking forward to, hopefully, a successful passage through this parliament to establish this select committee.

Again, thank you very much for everybody coming today. It is absolutely fantastic that you show support. As the member for Flinders indicated, we do discuss lots of issues here and we consider them to be very important because we are representing people out there, but at the end of the day, there are certain things that maybe we do not bring on board or bring into the public domain. This one here is very important.

When I was the member for Frome, I had the opportunity to understand a bit more about lymphoedema, which is a challenge for not only women but men also. I make no bones about it: I learn every day, and I am sure everybody in this house learns everyday, but the only way we will learn about it is by people like you guys bringing it to our attention so that we are more aware of some of the challenges and issues.

I say to people: do not feel embarrassed about talking about issues—whether it is endo, whether it is lymphoedema, whether it is mental health issues or anything like that. The more we open up about it and the more we talk about it, the more we as lawmakers and legislators in this house here can help those people out. Member for Waite: congratulations, and I am looking forward to the successful passage of this motion.

Ms HUTCHESSON (Waite) (11:43): I would like to thank everybody for their contributions and their understanding, even if you are unable to have the disease or do not have the disease but have that real passion to help us do everything we can to help our sufferers. I really appreciate all of your words.

Tammy Wynette once said that sometimes it is hard to be a woman. Let me tell you: if she was an endo warrior, she would have definitely put a bit more gusto behind that and said that sometimes it really sucks to be a woman. But we are here to try to do everything we can to bring awareness and to find ways to support women with this crippling disease.

To all of the endo warriors who are here today, to your mums, to your dads, to your friends, family and workmates who sit there and support you: thank you for coming along, thank you for being so willing to share your stories and for doing the work that we need across the state and across the country to try to help women in our situation. We are here today to bring on this select committee. I want to thank everybody for their support in that. It does sound pretty promising.

When I was 27 years old and I went in and saw the doctor and someone finally said, 'Maybe it's endo,' and I saw a specialist, and the words that came out of his mouth were, 'Well, what about you just have a hysterectomy'—at 27 years old—I said, 'No, thank you. I think we'll try a few other things first.' Today we have heard already this morning that one of our guests went to the doctor, to hospital, yesterday and was just dismissed.

We cannot have that anymore. We need everybody to know what it is. We need everybody to be talking about it, and this select committee is going a small way towards helping that. So thank you, everybody, again for your contributions. Thank you all for coming along. I commend the motion to the house.

Motion carried.

Ms HUTCHESSON: I move:

That a select committee be appointed consisting of the Hon. Leon Bignell, Ms Wortley, the Hon. D.G. Pisoni, Ms Pratt and also the mover.

I thank you all for your contributions, which I know will be very worthwhile.

Motion carried.

Ms HUTCHESSON: I move:

That the select committee have power to send for persons, papers and records and to adjourn from place to place and that it report on 28 November 2024.

Motion carried.

Ms HUTCHESSON: By leave, I move:

That the select committee have leave to sit during the sitting of the house today.

Motion carried.

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