Nicolle Flint (Boothby, Liberal Party) Share this | Link to this | Hansard source

I was humbled and honoured to address the EndoActive conference in Sydney over the weekend alongside my Labor colleague the member for Canberra. Together, the member for Canberra and I have formed the Parliamentary Friends of Endometriosis Awareness to end the silence on endo and finally achieve a proper policy response to this terrible condition.

I want to congratulate EndoActive organisers Syl, Lesley and Rod Freedman, and Lesley's book club, for their tireless and incredible work putting the conference together. I want to acknowledge and thank the medical specialists like Dr Susan Evans and Professor Grant Montgomery and educators like Deb Bush for giving their time to these women who desperately need answers, assistance and support.

I want to recognise the inspiring, tough and resilient women living with this awful condition. We will do everything we can to work for the policy change we know these women and our future generations of young women so desperately need. That's why the member for Canberra and I today met with peak endo groups EndoActive, the Pelvic Pain Foundation, Endometriosis Australia, the Canberra endometriosis support group and QENDO to discuss what we can all do to create and implement change. We discussed the need for recognition, awareness, education and research.

We will be taking these recommendations to the Minister for Health and the shadow minister for health. We will be hosting a formal launch of the Parliamentary Friends of Endometriosis Awareness later this year. This will provide an opportunity for the brave women who suffer this awful condition to tell their stories here at Parliament House. We will also outline the facts about endometriosis, a disease that afflicts one in 10 Australian women, along with 176 million women aged 15 to 49 worldwide. This statistic does not surprise me, as I personally know five women who suffer from this crippling condition, and it has had a major impact on their lives and their quality of life.

Endometriosis 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 a full hysterectomy. When I talk about the pain of endo, I mean pain that is so severe women can't get out of bed to go to school, to university or to work. This may be pain during their period, but, due to the severe nature of the pain and the condition, pain can be present constantly. When pain is so regular it becomes chronic pain, which is far more complicated to treat.

Women delay consulting a doctor for years for their condition, in part because we fail to educate women as to what levels of period pain are normal and what levels of period pain are not normal and need medical investigation. When women do consult a doctor there is an average delay of eight years before they are diagnosed with endo. Commonly, they see health professionals like physios or bowel specialists before they see a gynaecologist. When they do see a gynaecologist things don't necessarily get better. Women may have multiple surgical procedures, or they may be told that they will be cured if they have a baby. At the EndoActive conference we learnt of girls as young as 12 being told this was the cure for them, which is just shocking and completely outrageous. I am grateful to Syl Freedman for the work she is doing on this. Other women are told that a full hysterectomy will cure them of their pain, but in many cases it won't.

These are the sorts of stories brave women have shared on the EndoActive website. I was honoured to meet Hitesha, Bec and Tori in person at the conference, and I thank them for telling me about their experiences. I encourage everyone in this place to read their stories, like that of Marina, whose diagnosis took nine long years, four emergency-room visits, three surgeries and some questionable medical treatment that included questions like, 'Are you doing this to gain attention from your parents?' Anyone who has suffered chronic pain knows that this is a devastating and offensive thing to say to someone who is in constant or regular pain.

It's not just the pain and the lack of community and medical knowledge about this terrible condition that makes it so difficult to deal with; it is the interrupted school and university education, the struggle for women to hold down a job and the struggle for them to have a baby and start a family. For too many years women have suffered in silence. That's why the member for Canberra and I are doing our small part to end the silence on endometriosis. We're working with the dedicated volunteers at EndoActive, the Pelvic Pain Foundation, Endometriosis Australia, the Canberra endometriosis support group and QENDO to end the silence on endo.

Debate interrupted.

House adjourned at 20 : 00