Women with endometriosis know this too well. For decades they have suffered in silence; regularly dismissed by their health practitioners and perceived as weak or dramatic. In reality however, the disease is insidious. An inflammatory condition which sees tissue similar to that found in a woman’s uterus growing into other parts of her abdomen.
The tissue can then grow and spread painfully to other organs including (but not limited to) the kidneys, liver and bowels. If left untreated, the wayward tissue causes long-term dysfunction in abdominal organs, and can lead to infertility.
But, despite its severity, awareness of this condition has been limited and resources grossly insufficient. As Lucia Osbourne-Crowley, a regular contributor to Women’s Agenda and a sufferer of the disease wrote early in the year: “The disease is estimated to have both the same prevalence and impact on quality of life as diabetes, but receives less than 5% of the funding.
Lack of awareness and understanding of the disease and the way it operates has resulted in an average wait of eight to nine years between a patient’s first symptoms and her diagnosis.”
It’s cruel beyond measure.
Today however, the Federal Government has pledged a new approach; rolling out a national action plan designed to improve awareness, diagnosis and treatment of the chronic menstrual health disorder, and hopefully lead to a cure.
Health Minister Greg Hunt launched the national plan this morning acknowledging historic failures, with a further $1 million investment – increasing the government’s total funding to $4.5 million.
“Many have suffered in silence for far too long, enduring diagnostic delays of between seven and 12 years on average and experiencing poor clinical care, due to a low level of understanding,” Hunt said.
“This plan is extremely important. It addresses a historic gap and something that often causes debilitating pain and can lead to mental health complications, social and economic stress and infertility.”
Around $2.5 million will be allocated to the establishment of the National Endometriosis Clinical and Scientific Trials Network, which will enable patients, for the first time, to actively participate in the research that seeks to uncover new diagnostic procedures and less-invasive, effective treatments.
Other notable actions include encouraging the word “endo” be used in public discourse, creating and implementing free resource kits, updating school curriculums and developing national clinical guidelines. A targeted call for endometriosis research will be released through the Medical Research Future Fund.
In a more symbolic victory, the plan also recognises the significant burden this condition has placed on thousands of Australian women, reporting the disease has been “hidden for too long”. It acknowledges that endometriosis is likely more common than breast cancer, prostate cancer and diabetes, costing the economy $7.7 billion each year.
While other commonly misunderstood women’s conditions like polycystic ovarian syndrome and adenomyosis were not directly linked to this plan, Greg Hunt promised he was not opposed to allocating additional funding and resources where needed.
“This is a moment of hope, I am open to providing more funding,” he said.