House debates

Monday, 23 October 2017

Private Members' Business

Endometriosis

11:01 am

Photo of Gai BrodtmannGai Brodtmann (Canberra, Australian Labor Party, Shadow Parliamentary Secretary for Defence) Share this | | Hansard source

I seek leave to amend the motion relating to endometriosis in the terms in which it appears in the Notice Paper.

Leave granted:

I move:

That this House:

(1) notes that:

(a) one in ten Australian women have endometriosis, a disease in which the tissue that is similar to the lining of the womb grows outside it in other parts of the body;

(b) there is a lack of understanding in the Australian community about endometriosis and the impact it has on women’s lives;

(c) the disease can lead to extreme pain, infertility and other complications related to the bowel, periods, headaches and a variety of other symptoms around the body;

(d) there is a delay in diagnosing endometriosis of up to seven to ten years because the symptoms are variable; and

(e) University of Sydney research has shown that endometriosis costs Australia $7.7 billion each year—two thirds of this is in lost productivity and the rest is in direct healthcare costs; and

(2) calls on the Australian Government to end the silence about endometriosis by raising awareness of the disease and its symptoms across Australia and promoting further research.

My connection with endometriosis began in the 1980s when one of my best friends from high school was diagnosed with this insidious disease. It wasn't until March this year, when I shared my friend's experience at an Endo March high tea with an audience of about 100 Canberrans, that I joined the Endo Warriors. We have many Endo Warriors here today—some from Canberra, some who have travelled all the way from Sydney—to hear debate on this motion. Thank you so much for being here today. After speaking about that event in parliament, I posted the speech on Facebook and I was overwhelmed by the response. The views of the speech went up by the hundreds into the thousands in minutes. Comments flowed in from across the country and from overseas—from New Zealand, from Canada, from Brazil. I heard from hundreds of women and mothers and fathers who bravely shared their heartbreaking stories—stories that seemed to be being unleashed for the very first time. We heard of the misdiagnosis, the myths, the hysterectomies, the endless operations, the lost opportunities, the cost and the dreadful, dreadful pain, and of the daily struggle to take control of their lives.

Each and every one of the people behind me has a similar story. This is one recent story I heard: 'When I was diagnosed in 1981, so little was known about the disease. They called it the nun's disease. My doctor wasn't able to tell me much. I was prescribed testosterone tablets at $100 a bottle. I was told the only cure for endo was pregnancy.' From Katie: 'I work for myself and can't take days off. Having just spent days in agony not working, as I do for every month, for the last 20 years, the questioning by three different people at the pharmacy is embarrassing enough, let alone having to explain that my bowel is attached to my uterus and my surgery isn't until sometime next year.' From Samantha: 'It nearly killed me twice in a matter of months and my entire life has changed because of it. I've had 10 laparoscopic surgeries, one perforated bowel, another three corrective surgeries, a lot of scars, 18 months of hell and what will probably be a lifetime of pain.' From Jenna: 'Now, at 29, I have to have a hysterectomy. The amount of money that has been lost so I can do day-to-day things is astounding.' From Michelle: 'How about not being diagnosed until you are 53 and then it's not just endometriosis but it's grade 4. And in my 30s being told by a male doctor to go home and have vigorous sex to burst a possible ovarian cyst. I am a mess and will be needing a partial bowel resection along with a hysterectomy.

Since that first speech I have shared many stories like these in parliament on a weekly basis. I have shared these stories because they are the most powerful way of communicating the emotional, the physical and the professional toll of this insidious disease—the toll of this disease on the individual, the toll on the families, the toll on the friends, the toll on partners, the toll on the nation. I have shared these stories because I have been confronted and deeply moved by the tragedy of this disease. I've been confronted by the horror experienced by women, with beautiful young bodies, when they see for the first time the scars from their first operation.

I've been confronted by normally fit women with enormous potential being dubbed the sick person in the office. I've been confronted by the erosion in self-confidence and self-esteem that comes from a life of pain, uncertainty, fear, constant interventions and not being taken seriously. I've been confronted by the amount of radical operations inflicted on women, often at a very young age. I've been confronted by the lack of understanding and discrimination that exists in the workplace. I've been confronted by the lack of intimacy in relationships because sex lives are ruined by pain and endless bleeding. I've been confronted by the financial burden when women should be saving for first cars, new furniture for their rental, a deposit on a home, a trip overseas with their family or a holiday at the coast.

I've been confronted and deeply moved by the fact that so many women feel so alone and so frightened. They feel voiceless and powerless. I've been confronted and deeply moved by the courage of these women and their family and friends to share their experiences. I've been deeply confronted by the ignorance that this affects one in 10 women, which is why I will speak again and again on this issue.

After the member for Boothby heard one of my speeches in the chamber, we paired up to establish the bipartisan Parliamentary Friends of Endometriosis. We're looking forward to launching the friends next month. We're looking forward to working with the endo community to deliver change. We're looking forward to working with the endo community to show that they are not alone and to end the silence about endometriosis, this insidious disease, that is affecting one in 10 women in Australia each and every day.

Photo of Scott BuchholzScott Buchholz (Wright, Liberal Party) Share this | | Hansard source

I call for a seconder of the motion.

Photo of Maria VamvakinouMaria Vamvakinou (Calwell, Australian Labor Party) Share this | | Hansard source

I second the motion and reserve my right to speak.

Photo of Scott BuchholzScott Buchholz (Wright, Liberal Party) Share this | | Hansard source

Before I give the call to the honourable member for Forrest, I acknowledge the members in the gallery here and welcome them to the parliament.

11:06 am

Photo of Nola MarinoNola Marino (Forrest, Liberal Party) Share this | | Hansard source

Today I want to warn all young women to be aware of the symptoms of endometriosis. My daughter was one of those one in 10. I don't want any other young woman to go through what my daughter went through because of the failure to diagnose the disease early enough to prevent life-changing surgery. It took until she was in her 30s before a doctor finally said those words, 'You have endometriosis.'

Kylie had all the symptoms from high school age—heavy periods with extreme pain, short cycles, bloating, spotting in between, pelvic pain, constipation and migraines. After five failed attempts to carry out a pap smear test she visited a gynaecologist, who made her feel as though she was overstating her symptoms. She was married by then and had continuous problems with contraceptives and sexual function—the bleeding spoken about—but was told that she was normal and to just have a baby. Even though she knew she wasn't imagining the symptoms or making them up, she believed she just had to toughen up.

Her symptoms continued to worsen over time. Changes to her bowel and bladder emerged. She developed a fistula in her bowel. A second gynaecologist did exploratory surgery. A third gynaecologist recognised the images from her last day surgery and was concerned about the possibility of irritable bowel syndrome, so did his own exploratory surgery. He was the first one to say to her: 'I'm so sorry. No wonder you are in so much pain. You have the worst case of endometriosis I've ever seen. Unfortunately, it's been so aggressive it has attached itself to your bowel and is strangling it.'

To Kylie the scans looked like dozens of cobwebs overlapping each other attached to her insides. Multiple consultations and tests followed, as did medically induced menopause, her hair falling out in clumps and multiple surgeries to remove both tubes and an ovary. By March 2014 she was working with a colorectal surgeon and her gynaecologist, who conducted a bowel resection to remove what was affected by the endo.

Post op Kylie developed an infection at the drain site that camouflaged other very serious internal complications. She was rushed into emergency with excruciating pain, a skyrocketing temperature and faeces excreting through her urinary passage. She had surgery in Perth and spent 11 days in intensive care, and we nearly lost her. She had peritonitis, septicaemia, a lower bowel infection and a burst appendix, and her heart went into fibrillation when a PICC line was being inserted. She had 1,500 internal staples, 15 tubes inserted, three external colostomy bags, one of which was an ileostomy, and that jigsaw of scars on her body. Her weight fell to under 40 kilos. She subsequently spent weeks having three bags changed every day at our local Harvey Hospital by some wonderful caring local nurses. The first attempt to reattach her bowel and remove the ileostomy was not possible. She went into the surgery hoping it would be gone but woke up post-surgery still with the ileostomy. It was just the latest test of her mental and physical endurance.

Do I have to tell you what it felt like to sit beside her bed for 11 days, willing her to live and telling her just to breathe—'Breathe, sweetheart. Just breathe, Kylie'? Do I have to tell you how much pain she's been through? Do I have to tell you it shouldn't have come to this? I say to every young woman: take these symptoms seriously. Get a second or third opinion, if necessary. I say to GPs and gynaecologists: I know the complexity of the diagnosis, but please take seriously every young woman like Kylie who presents to you with these symptoms, young women whose instincts and symptoms are telling them there is a problem.

I'd also like to say how proud I am of my daughter. She suffered immeasurably. But, through it all, she never gave up, even when she was at her lowest in that intensive care bed, when we didn't know whether she would survive or not. One day she could not even lift her head off her pillow to kiss her father's hand as he left her bedside—that is how low she was. But she wanted so desperately to live. She fought to live. I am proud of her unfailing courage, her internal personal strength and her sense of humour.

It is not over for Kylie. It is not over for you women sitting here today. There is no cure for endometriosis. Like the member opposite, I'm very pleased to be an endometriosis ambassador. I urge every young woman to take these symptoms seriously and for every GP and gynaecologist to do the same.

11:12 am

Photo of Maria VamvakinouMaria Vamvakinou (Calwell, Australian Labor Party) Share this | | Hansard source

I am pleased to be following on from the member for Forrest and, indeed, the member for Canberra. I thank the member for Canberra for bringing this motion to this House so that we can raise awareness about endometriosis. Endometriosis is a hidden women's health problem, generally because women tend to suffer in silence. We have already heard accounts of this. It is, after all—and many will be familiar with this—often defined as just period pain and part and parcel of our menstrual cycle. Or my favourite way for it to be described is, 'It's just a woman's lot and you just need to deal with it.' But when period pain is so excruciating it leaves you debilitated, having to take time off work, resorting to heavy painkillers and spending days in bed, for those who need to stay home, we have to recognise this isn't just the plight of menstruation anymore. This is something more serious.

One in 10 Australian women suffer from endometriosis. It is a health issue that causes significant pain, as we've heard. If it goes untreated it can often lead to infertility and to more serious complications, which we have just heard about from the member for Forrest. For all too long endometriosis has been dismissed by GPs and doctors in Australia, as I said, as just as heavy, painful period pain. It is a common condition where tissues similar to the lining of the endometrium which normally lines the uterus are found in abnormal sites around the body. It can be diagnosed only by undergoing a laparoscopy or biopsy. When women are eventually diagnosed or seek additional health attention in relation to endometriosis it often follows a long and arduous road of misdiagnosis, pain, anxiety and, more often than not, silent suffering.

Adding to this 'women's lot' syndrome are the many cultural and religious attitudes towards women's menstrual cycles. You can find a situation in this instance which almost ensures that women of culturally and linguistically diverse backgrounds find it harder to speak let alone have the courage to seek medical advice. I have a very large number of culturally and linguistically diverse women in my electorate. This is a very pertinent issue for them. I'm very concerned for those who are unaware or too embarrassed to seek help from their local GPs and, more importantly, I'm concerned for those women who don't feel their female menstrual health is important enough to seek medical advice. So I am always grateful for the great work that women in my electorate do to help each other on a raft of issues, endometriosis awareness being one of them.

I want to pay tribute to Dr Umber Rind, who established a medical practice in my electorate that focuses primarily on women's health so that refugee and migrant women in particular have a safe space to discuss their issues. Raising awareness, diagnosing and treating endometriosis tackles cultural and religious taboos associated with menstruation head-on and ensures that the women in my electorate seek help and understand that, left too long or untreated, endometriosis can lead to infertility—and this is a more serious issue for CALD families in particular, who place a significant importance on starting a family. My refugee and migrant constituents are more often than not from a low socioeconomic background. IVF treatment may not be an option they can afford, lending itself to a whole host of other psychological health issues associated with not being able to have children. Dr Rind and her staff help women talk about these issues and encourage them to seek help.

I also want to acknowledge this new generation of younger women from CALD backgrounds, such as Dr Rind, and others, who are shifting taboos about women's health. I want to acknowledge in particular another young woman, Nelly Skoufatoglou, the English edition editor of the Greek Australian newspaper Neos Kosmos, for her work in using her personal experience of endometriosis to raise awareness. Nelly has been vocal about her experiences with endometriosis in ethnic media and social media in an attempt to debunk any myths around this condition and highlight the importance of treatment and, importantly, recognition, specifically in the core communities. In an article published earlier this year, Nelly talks about her journey with endometriosis—her eight years of silence suffering numerous misdiagnoses, several GP visits, specialists and surgeons. She talks about the effect this has had on her day-to-day life: the pain, the bleeding, the exhaustion, anxiety, tests, hormones, antibiotics, frustration, failed relationship after failed relationship, and her secret fear of losing her sanity. This is a courageous young woman who knows that the only way to change perceptions about this silent disease is by going public with them. Raising awareness is important because there is no other way to encourage women to seek advice and to speak up about this very silent condition.

Photo of Scott BuchholzScott Buchholz (Wright, Liberal Party) Share this | | Hansard source

I thank the honourable member for Calwell for her valued contribution. The question is that the amendment be agreed to.

11:17 am

Photo of Nicolle FlintNicolle Flint (Boothby, Liberal Party) Share this | | Hansard source

I'd just like to acknowledge the member for Canberra, my colleague who has done so much work on this issue—and we are working closely together to help end the silence on endometriosis. I see we have Endometriosis Australia over here, and a lot of supporters as well. Welcome, ladies; thank you for being here.

I am very pleased to speak about the important work that is being done in this area and the work that will continue to be done over the coming months and years. Since the member for Canberra and I founded Parliamentary Friends of Endometriosis Awareness earlier this year. the response I've received from the community has really been quite stunning. It has galvanised my resolve the see this women's health issue better understood, better diagnosed and better treated.

The number of women close to me, whether they're friends or colleagues, who have approached me to talk about endo since the member for Canberra and I put this on the agenda is really quite stunning. The prevalence of this issue is beyond anything that I imagined. I am shocked and saddened that so many women have suffered in silence and so badly for so long. Some of the experiences that have been shared with me are truly heartbreaking and these are the sorts of things where we will be working to make sure they don't happen in the future. Despite the fact there has not been enough research into this disease, we have estimates that it afflicts one in 10 Australian women, and 176 million women worldwide. Anecdotally, if the number of women I personally know who are sufferers is any indication, I can confirm that this figure is not far off the mark, and it could well be higher.

So, what is endo? Endometriosis is a disease that causes the cells that line the uterus to grow as lesions in other parts of the body within the pelvis, causing inflammation, severe pain and scar tissue. These lesions can stick organs together so that women have to have parts of their bowel removed, their ovaries removed, surgery to their bladder or even a full hysterectomy. When I talk about the pain of endo, I mean pain that is so severe that women can't get out of bed to go to school, to university or to work. This may be pain during their period, but it may be pain that lasts longer than that; it may last throughout the month or throughout the year. When women are suffering pain in such a constant manner it becomes chronic pain, and that is when we have very severe complications that are much more difficult to treat.

Women often delay consulting a doctor for years for their condition, in part because we fail to educate women about what is normal in terms of period pain. Also, we fail to educate them as to when they need to seek medical assistance and investigation. But when they do seek medical assistance and investigation, we know that there is often a delay of eight years before they get a diagnosis, which is just far, far too long. Commonly, women see health professionals like physios or bowel specialists and all sorts of other specialists before they finally get to a gynaecologist to deal with their pain. When they do see a gynaecologist, unfortunately, things don't necessarily get better. They are subject to multiple surgical procedures and are told things that, as we now know, are a bit of an old wives' tale—such as, if they just have a baby, things will get better. We know that is not the case.

On 9 September this year, the member for Canberra and I attended the Endo Active Conference in Sydney, which is an initiative spearheaded by the irrepressible Syl Freedman. Syl has done much to raise awareness of this condition and works with groups like Endometriosis Australia and the Pelvic Pain Foundation to support women with endo and to educate us all.

The lack of community and medical knowledge about this terrible condition has made it very difficult to deal with. For too many years, women have suffered in silence. They've suffered interrupted school and university education, struggled to hold down a job and struggled to have babies and start families. The cost to the lives of endo sufferers, their families, the health system and, indeed, the economy overall, must be huge. This is why we need more research and an increased understanding of this disease and how to treat it. This is why the member for Canberra and I are doing our small part to end the silence on endometriosis. We are continuing to advance the cause of sufferers. We have met with officials from the Department of Health and the Minister for Health's office, and I know that the member for Canberra is speaking with the shadow minister for health as well, so that we can do all we can to end the silence on endo and to help find better treatment outcomes for women but also, hopefully, a cure. The friendship group, together with other supporters like our Chief Government Whip, Nola Marino, who is an endo ambassador, will be doing all we can, along with all of the other wonderful groups, to end the silence on endo.

11:22 am

Photo of Justine KeayJustine Keay (Braddon, Australian Labor Party) Share this | | Hansard source

I thank the member for Canberra for bringing this motion before the House. I welcome those endo warriors from Canberra and Sydney. Endometriosis is a very personal medical condition, which should not be ignored. We are here today not to be silent. Today I intend to tell the story of a person in her own words about the impact that endometriosis has had on her life.

Katherine, a young woman from my electorate, who I know quite well, has been living with endometriosis for almost 10 years. These are Katherine's words:

I started experiencing symptoms of endometriosis when I was 18 years old but did not get a diagnosis until I was 23.

I saw various doctors, all who told me that I was experiencing was normal and it would get better as I aged.

I was experiencing extremely heavy and painful periods, bowel pain, pelvic pains that would shoot down my legs.

I was constantly bloated and had pain before, during and after my period. I was basically living in pain 24/7.

I was in my early 20's and was meant to be living my life, not constantly being in pain.

When I protested, I was sent for a pelvic ultrasound, all of which came back clear.

It was affecting my school and university studies and I just wanted an answer.

I finally saw a GP who believed the pain that I was constantly in. She immediately sent me to see an endometriosis excision specialist in Tasmania.

The specialist operated on me 4 weeks after initially seeing me and she found endometriosis on my bowel and left ovary.

My bowel was twisted and stuck to my pelvic wall.

When I was in recovery I got angry. I was angry that I was seeing GP's who told me that this pain was normal and angry that it took so long for a diagnosis. I got so angry that I decided to do volunteer work for Endometriosis Australia and make what I was going through worth something.

I now assist in running an online support group for sufferers of Endometriosis and ran a successful high tea to raise funds in 2016.

Endometriosis is not curable and I have had many hormonal treatments to help me manage my disease. Some have worked and some haven't.

The cost of this adds up very quickly and it has been difficult to afford my treatments and medication when I have had to take time off work because of this disease.

There is not much support or help for sufferers of endometriosis in North West Tasmania.

Everyone who suffers with the disease needs to travel to Hobart to see an endometriosis excision specialist.

For some of these people this means time off work and away from family.

I believe that it would be extremely beneficial for an endometriosis excision specialist to travel to the North West Coast once a month to see patients.

Excision surgery is an effective way to treat endometriosis, however, not all gynaecologists are excision specialists.

Education is also a must for all: employers, high school students, families and even GP's.

I believe that endometriosis education needs to be included in all high schools so that young girls know that constant period pain is not normal.

I also believe that sufferers of endometriosis in North West Tasmania would benefit from seeing a pelvic floor specialist who understands, manages and treats the pelvic pain associated with endometriosis.

I would like to congratulate Katherine for her bravery and for allowing me to share her very personal story. Endometriosis affects so many people like Katherine—people's partners, families and friends—in fact, one in ten Australians. It is a cruel disease that leaves people suffering in silence. Being uncomfortable when you have a period is normal; pain that stops life is not.

I again congratulate the member for Canberra for bringing this motion before the House today and thank those who've come here. I join with the member in calling for the government to end the silence on this disease and for all Australians to be far more well educated on this disease.

11:27 am

Photo of John McVeighJohn McVeigh (Groom, Liberal Party) Share this | | Hansard source

I am pleased to have the opportunity to rise and talk to this motion that has been brought to the chamber. I acknowledge the contribution of colleagues here in the chamber this morning and some of the personal stories and testimonies that have been shared with us all. It reminds us of the mystery of endometriosis and the fact that the answer to the causes of endometriosis is not clear at all. We know that it is likely that there is no single cause. A number factors may perhaps include genetics or environmental impacts, but the actual causes still remain a mystery for Australians, for doctors and particularly for women suffering from endometriosis.

The estimates, as colleagues have mentioned, are that one in 10 women suffer from endometriosis, with 176 million women worldwide suffering from endometriosis. It reminds us all that this is a significant condition, a significant disease, that we must continue to research and promote awareness of. Endometriosis impacts on aspects of a women's total life. It's not just the physical symptoms, as many of us know, that a woman has to deal with but the financial, relationship and emotional impacts, and at times the mental health impacts as well. My understanding is that the world endometriosis conference in 2023 is going to be held in Edinburgh. I'm sure all of us would be very much behind supporting the objectives of Endometriosis Australia to continue to strive for a conference here in the years to come.

In terms of promotion of awareness of and research into the endometriosis condition, there's no specific government program specifically devoted to endometriosis. Of course, there is support through universal health programs. Those of us who have been touched by endometriosis in our lives would all be aware of rebated services through the Medicare Benefits Scheme and subsidised medicines et cetera through the Pharmaceutical Benefits Scheme, something that this government continues to focus on. Surgery is a proven way of removing endometriosis. I am advised that there are six items on the NBS to cover that, and $19 million was expended through MBS rebates in 2016-17 for just over 35,000 such services.

I continue to discuss the government's focus, and I'm sure one that is shared by all, in maintaining a national digital gateway for women's health and wellbeing and the fact that the Jean Hailes Foundation has made a significant contribution in raising awareness of women's health issues, including endometriosis. The Department of Health continues to liaise with chronic disease peak organisations and to receive advice and direction on a range of those chronic conditions. As I mentioned earlier, Endometriosis Australia is a national peak organisation leading the charge on much of this. These investments and this focus on promotion research is significant, and I'm proud that our government is focused on that. But with this particular condition there is always more that can be done. I think we should all continue to strive for that, and all of us as members of this House should remain in support of Endometriosis Australia in regard to that.

Obviously endometriosis is a women's disease, but it is a disease that affects so many Australians who support, love, live with and are friends of women suffering from this condition. From my perspective, like many of us, as a brother, a partner, a husband, a father, a friend, I know full well the impact that endometriosis can have on women and their lives—financially, emotionally, relationship-wise and in some cases from a mental health perspective. Getting that understanding and perspective and getting that support is something that this motion is certainly promoting. I support those sorts of aspects. I recognise what the government is doing, but at the end of the day we must recognise that this impacts on all of us.

Photo of Sharon BirdSharon Bird (Cunningham, Australian Labor Party, Shadow Minister for Vocational Education) Share this | | Hansard source

The time allotted to the debate has expired. The debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.