When I started my PhD on excision surgery in endometriosis 25 years ago, the average time it took to diagnose endometriosis in Australia was more than 12 years. With greater awareness in the community – often led by the patients – this has reduced to about 6.5 years.
While this is still too long, we are definitely making progress thanks to well-organised patient organisations tirelessly lobbying government.
Just last week the prime minister, Scott Morrison delivered a $58m promise of funding for endometriosis to go towards pelvic pain clinics, diagnosis, research and disease management. There has always been bipartisan support for endometriosis initiatives and we will lobby whoever is in government to ensure these promises are delivered after the federal election.
Including other investments from the last four years, more than $80m in actual and promised funding has been generated for a disease that many Australians still don’t know about. This is one of the greatest investments – if not the greatest investment – for endometriosis per capita anywhere in the world.
Knowing what to do with this kind of funding has been possible because of the voices of patients.
It was through the National Endometriosis Clinical and Scientific Trials Network that the most current data has been made available on the extent of the disease that affects one in nine Australian women, girls and the gender-diverse community assigned female at birth.
We want the endometriosis community to share their voices and be heard through research programs like the NECST Registry and for a change in the future. Change that we all want, change that we all need. This registry will continue to collect data and undertake further studies to improve outcomes for people with endometriosis.
The momentum we’re seeing in endometriosis awareness and funding is new.
It was only in 2017 that the word “endometriosis” was spoken for the first time in parliament, after the then-member for Canberra, Gai Brodtmann, was invited to an Endometriosis Australia event to learn more about this devastating disease. Brodtmann teamed up with the member for Boothby, Nicolle Flint, who had been working with the Pelvic Pain Foundation of Australia (PPFA) in South Australia, to establish the group Parliamentary Friends of Endometriosis.
This ignited a series of changes in endometriosis care that has been made possible because of decades of advocacy from grassroots patient organisations such as Endometriosis Australia, QENDO, EndoActive and PPFA.
These organisations have been recently joined by Endometriosis Western Australia to form the Australian Coalition for Endometriosis, and it was these groups supported by bipartisan political willpower that created the National Action Plan on Endometriosis (Nape) – the first national action plan in Australia for any disease – that is considered the blueprint for endometriosis care globally.
The Royal Australian and New Zealand College of Obstetricians and Gynaecologists Australian Clinical Practice Guidelines on Endometriosis is a key outcome from the national action plan and provides current best practice in endometriosis based on scientific evidence.
I understand people are angry with the language that has been used in the guidelines and some have questioned why it is not more directive and overt. To be frank, we simply do not have the scientific support from quality research to make categorical statements yet. When considering the management of pain and pain-related symptoms that so drastically affect the lives of people with endometriosis, the best management practice is as yet undetermined.
The guidelines have been designed as an inclusive resource to provide the opportunity for personal choices.
Results from quality and peer-reviewed scientific research show that not all people with endometriosis want or need surgery, or respond badly to medical treatments. 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.
Research in endometriosis is lagging behind other chronic conditions, and we need to invest more to provide answers to the community. This applies to the discussion of excision versus ablation surgery.
While it seems logical that excision surgery is better for pain, the highest quality comparative studies report no difference in pain outcomes for these two surgical techniques. Put simply, not all published studies offer the same level of quality or insight into what is an incredibly complex, heterogeneous and debilitating disease.
One of the fundamental and most important outcomes from 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 endometriosis patients anywhere in the world.
I have been working alongside the support organisation Endo Warriors for the last 25 years and this is definitely the most exciting time in this field. It is only by harnessing the passion and energy of people who have had enough that endometriosis advocacy groups have been able to deliver outcomes in spades.
I want to thank those groups who have given tens of thousands of hours as volunteers and have been able to progress to increasingly professional and supported organisations who have delivered.
This includes Qendo’s endometriosis 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 as well as the Pelvic Pain Foundation of Australia’s PPEP talk, which is educating young Australians on endometriosis and pelvic pain.
This hard work and persistent engagement with government has paid off and the voices of the endometriosis community are being heard.
I know the work in this area is not finished, but with time, investment and our advocacy groups we can move from opinion through science to policy.
By working collectively towards our common goal of improving the lives of all those with endometriosis, it will be possible to move from disabling disease to an enabled life.
