The government has released Australia’s first National Action Plan for Endometriosis for women who it says have been “suffering in silence for far too long”
“Early in 2008 while at home with my sister I was struck down with what could only be described as the worst pain I had ever felt. My insides felt like they were constricted, my back as if it was being stepped on and crushed. I fell to the floor in the fetal position and cried,” says Marina*.
“Three hours into my emergency visit and after numerous blood tests, ultra sounds and poking of my abdomen I was placed in a room with a psychiatrist who asked me if the pain I was experiencing was mental and not physical because there was nothing physically wrong with me. ‘Are you possibly doing it to gain attention from your parents?’”
Four years passed.
Marina says she “continued to curl up in pain every month and cry myself to sleep feeling that this would be my life”.
One gynaecologist told her that she was fine and “just had to build up a better pain tolerance”.
It took several round of hospital visits, strong painkillers and operations before Marina was eventually diagnosed with endometriosis.
Altogether it took nine years for her to be diagnosed.
“I now know how hard it is to diagnose endometriosis and I’m grateful that mine has been found,” she says.
“It’s something that still to this day is overlooked in the medical community and it saddens me that so many women are living with this every day and have no idea what’s wrong with them.”
Marina’s story is just one of many across Australia who have suffered from endometriosis without proper diagnosis and treatment.
Endometriosis is believed to affect around 700,000 Australian women and girls.
It is a condition that affects a woman’s reproductive organs, occurring when cells similar to those that line the uterus are found in other parts of the body.
This often causes debilitating pain and organ damage, particularly during menstruation, and can lead to mental health complications, social and economic stress, and infertility.
Health Minister Greg Hunt today announced that the government has released Australia’s first National Action Plan for Endometriosis to provide better treatment and diagnosis of endometriosis – with the aim to ultimately find a cure.
“Many have suffered in silence for far too long, enduring diagnostic delays of between seven and twelve years on average,” says Minister Hunt.
“Patients have historically experienced poor clinical care, due to a low level of understanding of the condition, both amongst the public and the medical community.”
The Plan aims to achieve the following objectives:
- Improved public understanding and health literacy.
- Patients, families, partners and their carers are empowered, well-informed, active
- Healthcare professionals, educators and employers are well-informed about
endometriosis and its significant impacts, take women’s pain seriously and provide
- Healthcare professionals are supported to deliver best-practice.
- Early access to endometriosis-specific education, diagnosis, intervention, fertility
treatment, pain management options.
- Affordable and accessible pain management, mental health and psychosocial care
options for all patients.
- The gap in quality of life, including social and economic participation, between patients
with endometriosis and their peers continues to narrow.
- Access to simpler and less invasive diagnostic tests and treatment options.
- High-quality research findings are translated and implemented to achieve real-world
Earlier this year, the Turnbull Government announced a $2.5 million grant program under the Medical Research Future Fund.
These funds will be invested in establishing the National Endometriosis Clinical and Scientific Trials Network.
The National Endometriosis Steering Group will oversee the implementation of the National Action Plan over the next five years, supported by a $1 million investment.
Jean Hailes for Women’s Health will also receive $200,000 to roll out an online national awareness campaign during Women’s Health Week in September, to encourage women to visit their GP if they are experiencing symptoms of endometriosis.
A further $1 million has already been committed to supporting GPs and other frontline health professionals through better access to educational resources about endometriosis, to help reduce diagnostic delay, and ensure that the right clinical care is provided to the right patients at the right time.
This will include the development of a short course in endometriosis for primary healthcare professionals.
“I also look forward to future work with our medical colleges to develop an Australian-first clinical guideline for endometriosis, which will lay out best-practice care for patients,” says Minister Hunt.
“The National Action Plan was developed through close consultations with patients, the Australian Coalition for Endometriosis, and Australia’s leading endometriosis clinicians and researchers.”
*Marina’s story was shared by EndoActive Australia & NZ. Read more stories here
See more information on endometriosis here