Guest Post: Ainsley’s Endo Story
Ainsley shares her story of heartbreak and hope as she fought to find answers and support for her chronic endometriosis pain and recurrent pregnancy loss.
Recently, Australian researchers from Endeavour College of Natural Health and the Australian Centre for Complementary and Integrative Medicine, at the University of Technology Sydney, published a research study on the prevalence rates of self-reported diagnosed endometriosis in the Australian population. This study is the first glimpse into the self-reported prevalence rates of endometriosis in the Australian community and highlights a significant need for more research in this area, particularly with reference to the challengers associated with diagnosis. As many women experience, receiving a diagnosis can require various difficulties including “doctor shopping”, limited access for referrals to gynaecologists, treatment and surgical costs, waiting periods of laparoscopic diagnosis, and inadequate educational resources for women and medical professionals in context of understanding the characteristics of normal and abnormal presentations of menstruation. Without addressing these factors, among others, the prevalence rate of endometriosis in Australia will continue to be hindered.
Previous studies have identified an estimated prevalence rate of approximately 560,000 of Australian women are diagnosed with endometriosis, which aligns with another study that reported a 3.7% prevalence rate. This study identified a rate of 3.4% of women of reproductive age in Australia are diagnosed with endometriosis. These reports align with the estimated global prevalence of 4.8% that was reported in 2015. Additionally, as reported in the 2015 study, as prevalence rates rise, as does the cost to women’s out of pocket expenses and cost to the health care system, as recently highlighted in a news article stating that as much as 20% could be increased to standard medical treatments for endometriosis.
Receiving an accurate prevalence rate of endometriosis is not without its own difficulties. Firstly, to receive diagnosis women are required to undergo a costly surgical procedure – laparoscopic surgery, being the gold standard for diagnosis. However, there are barriers that are causing women to not be able to receive a correct diagnosis such as cost, waiting periods etc. Additionally, due to these factors, some women may receive a verbal confirmation of diagnosis from their medical professionals, purely based on presentation of their symptoms. This however, leads to over diagnosis and not an accurate presentation of the disease in Australia.
It is hoped, that with continued research focus on the prevalence rates of endometriosis, policy makers will have a greater understanding of this disease and the burden it can have on women’s lives, the health care system, and the economy. Within the Australian context a movement has begun with the launch of Australian Coalition for Endometriosis (ACE) and the development of the National Action Plan for Endometriosis. While this movement is in its infancy, the more research and government attention this disease can draw upon, the more accurate rates of prevalence, alternative routes for diagnosis, and supportive treatment regimens can be developed to assist women living with this disease.
By Rebecca Reid
Associate Director Research, Office of Research, Endeavour College of Natural Health
PhD (candidate), University of Technology Sydney
Fellow, International Naturopathy Research Leadership Program, ARCCIM, University of Technology Sydney
Ainsley shares her story of heartbreak and hope as she fought to find answers and support for her chronic endometriosis pain and recurrent pregnancy loss.
Finally, menopause is out there on social media, and it is no longer a taboo subject – remember, it impacts half the population. Here’s Jadie’s story of medically-induced menopause.
Our first Walk The World 4 Endo was a great success. We had hundreds of walkers take part. As a collective, we walked 13, 588km
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