Motions

Endometriosis

Ms HUTCHESSON (Waite) (11:01): I move:

That this house establish a select committee on endometriosis to inquire into and report on—

(a) the number of women in South Australia who suffer from endometriosis;

(b) the barriers to getting a diagnosis, gaining access to treatment including primary care, specialist clinics and ongoing pain management;

(c) the current treatment and supports available, their evidence-based effectiveness and potential side effects and impacts;

(d) the impacts to employment of sufferers and employer best practice in supporting women with the condition;

(e) education available to young women, healthcare professionals and others;

(f) research and trials currently being explored in Australia; and

(g) any other related matters.

I want to thank everybody for being here in thanking the house for the opportunity to move this motion to establish this very important select committee, and I hope it has the support of everybody here. It is important because endometriosis is a debilitating illness that affects over 14 per cent of girls, women and those assigned female at birth in Australia, yet it can take six long years to get a proper diagnosis. That is six long years of living in pain.

The disease often, but not always, starts in teenage years and is often dismissed as period pain, but it is far more than that. For those who do not know, endometriosis is a debilitating condition where cells similar to those that line the uterus grow in other areas of the body, most usually around the ovaries and uterus, but not always. They can grow outside the uterus.

The endometrial cells found outside the uterus grow to form patches that bleed and leak fluid around the time of menstruation which can lead to inflammation, scarring and lumps. The patches stay in different parts of your body—for example, the lining of your pelvis, your abdomen, your upper abdomen, your abdominal wall or, more rarely, outside your pelvic area. In my case, it was up inside my rib cage.

I have also recently found out that it can lead to reverse menstruation, where menstrual blood flows back through the fallopian tubes and into the pelvic cavity instead of out of the body. The blood contains endometrial cells from the inner lining of the uterus. These cells may stick to the pelvic walls and surfaces of pelvic organs. The symptoms are endless and the pain is ongoing.

For young people, it can lead to issues at school, including absenteeism and a reluctance to take part in sport and other activities. Later, in the workplace, the pain endured and often an inability to concentrate impacts the sufferer's opportunities to learn and contribute. Quite often, employers do not understand, are not compassionate and do not see it as a plausible reason that someone is not up to their best or able to come into work.

This morning I spoke to John Cranwell from Active Inclusion, who is very open about talking about periods as a male, and he suggested that when he speaks to groups of women and asks them how many days of their sick leave each year they use for pain management of periods or endometriosis, it is often 70 per cent. That is 70 per cent of their sick leave, which does not leave them much if they have the flu or other illness.

For me, it just meant I soldiered on—as a chef, as a bank teller, as an organiser—because I was too embarrassed to talk about it. I always had a male boss, and I just could not admit it. I could not go up to him and tell him what was wrong with me. That was before I began working for a union with a boss and a national secretary who were compassionate and who did understand.

On one occasion I was working from home, and I had to lie down due to the impact of the heavy painkillers. Unrelated, the National Secretary of the Finance Sector Union, my employer, Julia Angrisano, called me to talk, and I admitted to her that I was lying down due to endo. She was shocked that I had been working, and we talked about how menstruation leave was necessary and overdue, and I am now proud that my union, the Finance Sector Union, has been working through enterprise bargaining with its largest employers to establish menstruation leave and some, to their credit, provide it.

From my experience, I grew the strength to talk about it, and those here know that I have spoken about it here on several occasions and that is now in the history books. I am not afraid or ashamed to say it anymore: endometriosis, endometriosis, endometriosis. One of the interesting things about endometriosis is that symptoms can vary from person to person and, for that person, from month to month, but they can be so bad sometimes that the person cannot even get out of bed. They need to take those heavy painkillers just to be able to move, which leave them exhausted, sleepy and nauseous.

As I mentioned, endometriosis mostly affects reproductive organs and can lead to infertility, but it can also be found in other parts of the body, which causes the sufferers to have pain all over. How can a disease that causes so much pain, that affects so many women, not be on the radar of some health professionals when sufferers seek diagnosis? According to Endometriosis Australia, despite the growing awareness of endometriosis, the community and many health professionals lack a genuine understanding of the life-defining disease, which affects one in seven women—14 per cent of the population—and has no cure.

Efforts have reduced the diagnosis time from seven to 12 years to 6½ years on average, but much more work needs to be done. According to Jean Hailes for Women's Health, a not-for-profit organisation dedicated to improving women's health across Australia, this is because symptoms vary between women and symptoms also change over time. Also, period pain is often accepted as normal. Some women have asymptomatic endometriosis, which means they do not experience infertility or common symptoms such as pelvic pain. In these cases, the condition may not be found unless there is an unrelated operation.

There is so much to learn and understand, and my hope is that this select committee will provide our government with the information it needs to deliver better policy and better funding to support sufferers. The federal government announced their national plan for endometriosis, which aimed to improve patient and medical community understanding of the disease, but there are many girls, women and those assigned female at birth who suffer in silence as they are either unaware they have the disease, are embarrassed or are unable to access the care that they need.

In 2021, on rough figures, 5.1 per cent of Australians were living with diagnosed diabetes, 2.9 per cent with heart disease and, on rough numbers again, 6.9 per cent of Australians suffered from endometriosis, and they are the ones that knew that they had it. Given half the population is wiped out due to them not having a uterus, the numbers are alarming.

Endo warrior Deanna Wallis, who is here today, has been suffering for over 16 years, has just had her 14^th surgery and can no longer have children and is fearful of the impact on her brain and mental health. She has had various experiences throughout her years and raised concern about the hospital system, where for some visits she has been located in the Flinders Medical Centre maternity ward, which is just heartbreaking for someone facing infertility. I want to thank her for sharing her story and for being here today with her mum.

Multiple studies show that when a person has chronic pain-related endometriosis their quality of life decreases. They may feel depressed or anxious. These mood issues can cause them to experience more pain, creating an unpleasant cycle. When someone suffers from endometriosis, they often cannot predict how they will feel from day to day.

Carrying out regular activities can be difficult, making them feel angry, sad, frustrated, anxious and sometimes desperate to change their situation. Needing to cancel important plans or skipping events with family and friends can cause sufferers to feel like endometriosis controls their life, contributing to feelings of isolation, disappointment and low mood. One survey in America found that about 50 per cent of women with endometriosis experience suicidal thoughts or feelings related to their gynaecological condition.

There is work being done in regard to research and support. I would like to thank the team from Robinson Research Institute who are here today. They work tirelessly to better understand the disease, as well as creating support services such as EndoZone, which, for those who are not aware, is a fabulous website with information, symptom checkers and advice not only for sufferers but also for physicians.

Endo can be so bad that sufferers not only feel terrible but can feel embarrassed to talk about it—to even say the word or speak about their periods, as I said earlier. We need to do more. It happens every month for quite possibly 40 years of a woman's life. In the first few months after I found out my pain was not just period pain but endo, I remember contemplating the thought that every month there are three to five days of pain coming. It is just soul destroying, and sometimes the pain can last a lot longer than that.

I definitely did not contemplate back then that I would ever have an opportunity or a platform in government to create a select committee to really get into the detail of this wretched disease, but I am so incredibly grateful that this opportunity has arrived. I would like to thank the Minister for Health for his support, and all members of the government, and I hope that I can do whatever I can to help our endo sisters.

As I said, it is so incredibly bad that sometimes all you can do is laugh at the hand you have been dealt, otherwise you will probably cry. I can advise tears have been shed many times, but raising awareness and making it normal to discuss, so that we can all share the experience, is so important. I know that today—I am not sure if she is here yet—Libby Trainor Parker is coming to support us as well. She has done such a great job in raising awareness through her books and also her award-winning Fringe show, and I appreciate her support as well.

More needs to be done in research, treatment and ongoing care, as well as education of both the sufferer and the treating physicians and surgeons. It is not just about a sore tummy; its impact is life-changing. A select committee will allow the government to hear directly from sufferers, researchers, educators and treating physicians about how girls, women and those assigned female at birth can be supported, treated and educated, and where investment needs to be directed.

In closing, I would like to again thank the Minister for Health for his support, and all the people who have come along today to support me, including my family—which has two other endo warriors up there—and everybody else in this chamber who supports this and supports the government to help our endo warriors.