Support for women with endometriosis

19 Oct 2020 speech

Ms FLINT (Boothby—Government Whip) (19:35): Earlier this year I was diagnosed with stage 4 endometriosis. Endo might be a little known disease but it affects at least 1 in 10 Australian women, often causing pain, infertility and other serious complications, and stage 4 is as bad as it gets. To say my diagnosis was a shock is something of an understatement. During my time in parliament, I have been a leading advocate for women with endometriosis and, as such, I thought I knew more than most about the symptoms of this disease. Clearly, I was wrong. My experience goes to show how much we still have to learn and communicate about this debilitating condition, which causes cells, like the lining of the uterus, to grow outside the uterus in other parts of the pelvis.

I am talking about the variety of symptoms and where to get more information today in the hope this helps other women identify if they might have endometriosis and seek the help they need, as I have now done. The clearest indication you might have endometriosis is bad period pain, but you need to understand what this means. For too long women have been told that period pain is normal and it's just part of being a woman. We all need to understand the difference between normal and abnormal period pain, which I certainly didn't before my diagnosis. I thought my pain was normal. I now know abnormal period pain is pain that doesn't go away even if you've taken over-the-counter medication like Naprogesic, ibuprofen or Nurofen, combined with paracetamol. None of that worked for me. I had to take codeine for my pain, and that didn't get rid of it, it just made it bearable.

But I'm one of the lucky ones, because my pain never stopped me from doing anything. My pain didn't stop me from having a successful career in policy, writing a weekly newspaper column, getting elected twice to federal parliament in a marginal seat—including winning the 2019 election despite the very nasty campaign against me by the Labor Party, GetUp, the unions and a stalker. Many women, by comparison, miss school, study, sport and work because of their severe pain, which might not just be when they get their period but throughout the month. Many women, like me, have some level of pain or discomfort most of the time. Mine mainly related to my bowel and severe bloating. I say to those women: don't assume your problem is ovulation, or ovarian cysts, or your bowel or your diet, or back issues. Don't assume it's part of being a woman and that maybe you should just toughen up. Please seek medical advice. If you don't have bad period pain there are many other symptoms that might indicate endo. Please seek advice if you have one or more of the following: heavy periods with clotting and flooding, especially if you have to get up in the middle of the night to change tampons or pads; dark brown or old looking blood leading up to or after your period; obvious and uncomfortable bloating or bowel issues like constipation and diarrhoea around the time of your period; bladder pain, especially around the time of your period; painful sexual intercourse; an inability to get pregnant; unexplained miscarriages; unsuccessful IVF treatments; or a close relative who has endo.

There are two very helpful books regarding endometriosis symptoms and treatments that I cannot recommend highly enough for any women out there right now thinking, 'Oh, my goodness, that sounds like me.' They are Dr Susan Evan's book Endometriosis and Pelvic Pain and Dr Graham Tronc's book, Endometriosis 101. There are also amazing organisations—like QENDO, the Pelvic Pain Foundation, Endometriosis Australia, EndoActive, the Canberra Endometriosis Centre, the Canberra Endometriosis Network, Gain, Endometriosis Perth Sisterhood of Support and the Jean Hailes foundation—who can offer you information and support.

I never imagined back in 2017, when I started working on endo policy with now retired Labor MP Gai Brodtmann, that I would find myself diagnosed with endo. The reason I have spoken publicly is that I know how much I have been helped by the stories of other women, their partners and parents who have bravely shared their symptoms of pain, surgery, struggles to have children and search for answers. We have spoken out in the hope that we can help other women too. Before my diagnosis, I personally knew 30 women with endo. Since sharing my story, this number has risen to 54. Endometriosis is literally everywhere. We need the facts, the symptoms, the treatment, the research, the support and the stories of hope, recovery and resilience to be everywhere too.