Last week at Parliament House in Canberra, politicians and groups joined together with girls and women with pain to formally launch the Parliamentary Friends of Endometriosis group – a significant step forward for the 1 in 5 girls who live with distressing period pain and 1 in 10 women who have a diagnosis of endometriosis.
While life is difficult for all people with persistent pain conditions, an area that has been consistently neglected with regard to recognition, diagnosis, research, services and respect is pelvic pain in girls and women. For example, Australia’s Women’s Health Policy mentions pelvic pain only once, and only as a possible sequelae of Sexually Transmitted Disease.
Not all pelvic pain in girls and women is due to endometriosis. However, it is common when severe pelvic pain begins in the teenage years and can be responsible for enormous physical and emotional pain, sorrow and missed opportunities, which for some includes the inability to fall pregnant.
The Parliamentary Friends of Endometriosis group provides an opportunity to put a spotlight on this disease. It has been supported by the collaboration of MPs Gai Brodtmann and Nicolle Flint, who have worked with the Pelvic Pain Foundation of Australia, EndoActive, QENDO, Endometriosis Australia and the Canberra Endometriosis Network, as well as researcher Grant Montgomery from the University of Queensland. These organisations have joined forces and now collaborate under the name Australian Coalition for Endometriosis (ACE).
Other supporters who spoke at the launch included Government Whip Nola Marino, whose daughter suffers severely from this condition, Health Minister Greg Hunt and Shadow Minister Catherine King.
In his address Minister Hunt offered a sincere apology to girls and women for the pain and suffering that they have endured, and a promise that increased support would be forthcoming. His announcements included:
a national action plan for endometriosis;
research funding of $160,000 for the University of Queensland;
including endometriosis as a targeted condition for the Medical Research Future Fund; and
a request to the Jean Hailes Foundation, which is involved in a range of women’s health issues, to have endometriosis as the focus of Women’s Health Week in 2018.
In the future, ACE hopes the Australian Government will give consideration to a menstrual education program in schools similar to the one piloted in South Australia in 2017, and prioritisation of dysmenorrhea (painful periods) for development of a Clinical Care Pathway to support GPs. An Australia-wide awareness program to educate the community has also been requested.
Pelvic pain specialist Dr Susan Evans is pleased with the progress: “Watch this space. After long-term neglect, it’s moving more rapidly than we could have imagined. The bipartisan and extensive political support is heart-warming. The drive from consumers is strong and increasing.”