The average time it took to diagnose endometriosis in Australia was more than 12 years when I started my PhD 25 years ago. With greater awareness in the community, this has reduced to about 6.5 years.
We are definitely making progress thanks to patient groups lobbying the government.
Scott Morrison, the prime minister, made a $58 million promise for endometriosis last week. After the federal election, we will lobby whoever is in government to deliver on the promises made in the bipartisan support for endometriosis initiatives.
More than 80 million dollars has been generated for a disease that many Australians still don't know about. If not the greatest investment, this is one of the best for endometriosis per capita in the world.
Knowing what to do with this kind of funding has been possible because of the voices of patients.
One in nine Australian women, girls and the gender-diverse community assigned female at birth are affected by Endometriosis.
We want the community to be heard through research programs like the NECST Registry and for a change in the future. Change that we all need. The registry will collect data and do more studies to improve outcomes for people with endometriosis.
The funding and awareness of endometriosis is new.
The word Endometriosis was spoken for the first time in parliament in 2017: after the member for Canberra was invited to an Endometriosis Australia event to learn more about the devastating disease. The Pelvic Pain Foundation of Australia (PPFA) in South Australia had been working with the Parliamentary Friends of Endometriosis.
A series of changes in endometriosis care have been made possible because of decades of advocacy from grassroots patient organisation such as Endometriosis Australia, QENDO, and PPFA.
The National Action Plan on Endometriosis (Nape) was created by these organizations and Endometriosis Western Australia, and was supported by bipartisan political willpower.
The national action plan resulted in the creation of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists Australian Clinical Practice Guidelines on Endometriosis.
I am aware that people are angry with the language used in the guidelines, but I am not sure why it is not more directive and overt. Quality research does not support categorical statements yet. When considering the management of pain and pain-related symptoms that affect the lives of people with endometriosis, the best practice is not yet known.
The guidelines are designed to give the opportunity for personal choices.
Quality and peer-reviewed scientific research shows that not all people with endometriosis want or need surgery. While we have our eyes on a future where a cure exists, the current reality of endometriosis care in Australia is that management needs to be as unique as the patients who suffer from it.
We need to invest more to provide answers to the community because research in endometriosis is lagging behind other chronic conditions. This applies to the discussion of surgery.
It seems logical that excision surgery is better for pain, but the highest quality comparative studies show no difference in pain outcomes for these two surgical techniques. Not all published studies offer the same level of quality or insight into the disease.
One of the most important outcomes of the first Australian endometriosis guideline is to demonstrate where the gaps in our knowledge are and how we can improve that knowledge to provide the best-quality care to patients anywhere in the world.
This is the most exciting time in this field for me because I have been working with the support organisation for 25 years. It is only by using the passion and energy of people who have had enough that advocacy groups have been able to deliver outcomes.
I would like to thank the groups who have given tens of thousands of hours as volunteers and have been able to progress to more professional and supported organizations.
This includes Qendo's app to assess patient symptoms and treatment, research studies supported by Endometriosis Australia that have led to millions of dollars of government-funded research, and the advocacy of EndoActive in getting a new drug listed in Australia to manage endometriosis.
The voices of the endometriosis community are being heard thanks to the hard work and persistence of the government.
We can move from opinion through science to policy with time, investment and our advocacy groups.
It will be possible to move from disabling disease to an enabled life if we work together.
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