March is Endometriosis Awareness Month. Endometriosis is an extremely painful disease affecting around one in seven Australian women and teenage girls. It’s a long-term inflammatory condition where deposits of tissue similar to the lining of the uterus are found outside the uterus, on the bowel, bladder and ovaries, and it causes significant pelvic pain. It can lead to issues with infertility for a third of those affected. Endometriosis can have a profound, debilitating and life-threatening impact. Women cannot prevent endo and, as I said, it’s extremely painful. There is no cure, and it can have life-changing effects on women. Currently it’s not known what causes endo, and it can only be effectively diagnosed with surgery.
I was very proud when the coalition introduced the first ever National Action Plan for Endometriosis. I’m also proud that Australia was the first country in the world to enact a national action plan for endo, with awareness and education, the first ever clinical guidelines for endo, a digital platform for endo research, and support, management, care and research as the focus. Our plan has been copied by other countries. Australia is a global leader in this field. In government, the coalition also supported pelvic pain clinics, and it supported the Pelvic Pain Foundation providing education in schools through their pep talks.
It’s taken us many years to get to this point. I understand the first time endo was raised medically was in 1893. I acknowledge the bipartisan work of the Parliamentary Friends of Endometriosis Awareness and my coalition colleagues who worked tirelessly to keep endo at the forefront of health considerations while we were in government. I’m also grateful that the current government is continuing to support the national action plan. I acknowledge the groups and individuals who continue to work on endo and thank them for their dedication. Women have historically waited 6.5 or more years for a diagnosis. At a recent Parliamentary Friends of Endometriosis Awareness event, we were told about women who currently have to see at least four doctors to get an accurate diagnosis. I also acknowledge the great work of Professor Jason Abbott, who is involved in training health professionals in endo. It’s important. I understand that only around five per cent of GPs are adequately tooled and trained to deal with endo. I want to also thank Endometriosis Australia board member Associate Professor Anusch Yazdani, who is a leader in surgery and reproductive endocrinology.
I also want to encourage women with endo to sign up to the Australian National Endometriosis Clinical and Scientific Trials Registry. Australia is the best place in the world to do endo research. This site aims to build a complete picture of how endo affects people’s lives. It’s a research network made up of clinicians, healthcare providers, scientists, patients and consumer reps who are determined to fill gaps in endo research to improve patient care and provide better treatment options and more affordable medicines. NECST has 1,800 women on the registry. As I said: if you are a woman and have endo, please sign up. You could help lead to a breakthrough to improve the understanding and, hopefully, one day lead to a cure.
EndoZone is a site that women can explore to look at endo basics. It’s a collaboration of EndoActive and other groups and researchers. We are approaching EndoMarch. Please join in. Wear something yellow. In Australia and worldwide, they’re lighting up venues in yellow. There’ll be endo high teas. Come up with your own EndoMarch activity. I know we have a plan in this place with the parliamentary friendship group as well. I’ve been out there campaigning to have one or two pelvic pain clinics in my electorate in the South West of WA and for the South West. I want to see more of those pep talks for young women to know what the symptoms are, and I want all GPs to take them seriously.
I want to also thank my daughter, Kylie, for letting me tell her very personal story, which helped to lead to this first ever national plan for endometriosis. It was tough for her to do. I thank all of those other incredibly brave and often long-suffering women with endo who’ve worked with us over these years to help tackle endometriosis. I encourage you all to get involved with EndoMarch and keep working on a cure for this disease.