A sad story recently made the headlines on the website of The Endometriosis Foundation of America. Michelle Gilmore, an Australian endometriosis patient living in Sydney, recounts how she was so unhappy with her clinical management that she eventually took her bags and arranged to have surgery with a laparoscopic expert in New York, halfway around the world. “There is complete and utter ignorance in Australia when it comes to endometriosis diagnosis and effective surgical treatment,” says Gilmore.
While her words are harsh to women who have good experiences and those dedicated experts in endometriosis caring for them, many women in Australia will probably recognise the experience. Truth be told, patients all over the world, including the USA, are struggling to have their disease diagnosed early and treated well, with poor pathways in endometriosis care and no clinical standard, so it is not a uniquely Australian problem.
Australia has a rapidly growing number of well trained, endometriosis-specific ultrasound specialists and radiologists with a special interest in detecting the type of endometriosis Michelle Gilmore was suffering from. Accessing these specialists does require the right referral and work is being done around upskilling specialists across the country. We can also be proud of the efforts of the Australasian Gynaecological Endoscopy & Surgery Society (AGES), which has promoted an exemplary surgical accreditation program, ensuring that many more women will have access to highly skilled surgeons. Every Australian state has excisional surgeons who can provide this focused care for severe disease and access to other specialists such as urologists and colo-rectal surgeons when needed.
So, why is there a problem then? One of the key issues highlighted in the National Action Plan for Endometriosis, recently launched by the Hon Greg Hunt, Federal Health Minister, is the lack of awareness of the disease in the community, among patients and also doctors. One of the key pillars of this initiative is to raise that awareness. Further upskilling GPs and gynaecologists is one valuable approach but making patients better informed advocates for their own health care will reap even greater rewards in my opinion. Having a clear understanding for where to go for information and recognised care pathways will aid the endometriosis sufferer in making a decision that suits her circumstances.
Ultimately, doctors should never treat the disease but always the patient. Endometriosis can impact women and girls in so many different ways that it is absolutely essential that women feel empowered to ask the right questions about what will help them achieve increased well-being. For some, like Michelle Gilmore, it may be excisional surgery but for others it may be a very different tailored approach.
Michelle Gilmore’s story highlights the work that still needs to be done here in Australia and everywhere else across the world. If that helps raising endometriosis awareness, we should all welcome it.
Professor Luk Rombauts MD, PhD, FRANZCOG, CREI
Prof Rombauts is the inaugural Group Medical Director for Monash IVF Group, an international conglomerate of IVF units which performs more than 17,000 IVF treatments per year. He is an Adjunct Clinical Professor in the Department of Obstetrics and Gynaecology at Monash University and coordinates research in his role as Research Director of Monash IVF and as a Research Fellow at the Hudson Institute of Medical Research. He has published over 110 papers in peer-reviewed journals and his main research interests include endometriosis and embryo implantation.
Prof Rombauts is the Vice-President of the Fertility Society of Australia. He was elected a Board Member of the World Endometriosis Society in 2008 and is the current President-elect. In 2011 He was appointed to the World Endometriosis Research Foundation Board of Trustees.
His areas of clinical expertise include the management of male and female infertility, endoscopic surgery with a special interest for endometriosis, and reproductive microsurgery.
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