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We must listen to the needs of women with endometriosis, tailoring research and associated funding to be able to answer the key questions they have identified as their top priority, write Associate Professor Mike Armour and Dr Cecilia Ng.
Endometriosis is a common yet under-recognised chronic disease with one in nine (more than 830 000) Australian women and those assigned female at birth diagnosed with endometriosis by the age of 44 years (here). Due to stigma around periods and difficulties with diagnosis, it is estimated that people in Australia have experienced a diagnostic delay of between 6.4 to eight years. Symptoms are varied but very commonly include severely painful periods, chronic pelvic pain, pain on urination, pain with bowel movements, painful intercourse, and fatigue (here). Endometriosis can have a negative impact on all aspects of an individual’s life, including work, education, sexual and social relationships, self-identity, and body image. It also has a very significant financial burden, costing over $9.7 billion per year in Australia (here).
Endometriosis research priorities have been developed in the past, but previous efforts have mostly included researchers and/or clinicians, with only one reporting consumer involvement (here). Patient-centred medicine demands consumer involvement in health research and is becoming a basic requirement when applying for research funding.
Endometriosis research priorities identified by consumers often differ from those developed by clinicians and scientists in key areas (here). For example, consumers and family members were more likely to prioritise education, awareness, emotional impact, and comorbid conditions, whereas health care professionals and scientists were more interested in cause or risk factors, diagnosis and screening, treatment, and fertility.
The National Action Plan for Endometriosis, launched in 2018, has three major goals: i) awareness and education, ii) clinical management and care, and iii) research.
To meet these goals within the constraints of limited funding, the setting of research priorities is vital, and so with the generous support of Endometriosis Australia we undertook a survey of people with endometriosis, their family and friends to better understand what their priorities were. This was recently published in the Australian and New Zealand Journal of Gynaecology.
Surveying research priorities
We developed priority areas for endometriosis research by polling members of the Endometriosis Australia’s closed Facebook group. We surveyed online not only people with a diagnosis of endometriosis but also their friends and family. The survey was circulated via Endometriosis Australia’s social media platforms (Facebook, Instagram) and their mailing list. People were asked to rank the 16 identified research areas (five general and 11 specific) in order of importance from 1 (most important) to 16 (least important).
We received 1169 completed responses, from those with endometriosis (91.3%), family members (4.7%), partners (2.4%) and friends (1.6%). The highest and second highest ranked general research priority was across all responders was “what are the best ways of treating endometriosis and manage its symptoms?” and “what are the causes of endometriosis?” respectively. From the specific research priorities people wanted, which were designed for researchers to understand the more specific questions that people wanted answered, the top ten (in order) were:
- Does repeat surgery for endometriosis improve patient outcomes?
- What is the effect of moderate to severe endometriosis on fertility?
- What early life factors may predispose to endometriosis?
- What is the financial burden of living with endometriosis?
- Can ultrasound reliably detect early endometriosis without surgery?
- Is there a blood test that could screen for endometriosis early?
- What is the efficacy of using medical cannabis for endometriosis-associated symptoms?
- What is the quality of life and psychological impact of endometriosis?
- What is the effect of diet and lifestyle interventions (like engaging in regular, graded exercise) on the symptoms of endometriosis?
- What is the efficacy of using melatonin for endometriosis-associated symptoms?
Where research could be prioritised
Based on our findings we suggest that funding is prioritised to four key areas: non-invasive diagnosis, outcomes from different surgical treatments, novel/emerging non-surgical treatments, and programs to help reduce the financial impact of endometriosis.
Diagnosis has historically taken between six and eight years in Australia (here), and although that has reduced to around three years on average (here), this is still too long. Diagnosis remains a primary challenge due to the need for a laparoscopy to confirm a diagnosis (here). However, it is becoming accepted diagnosis can be made based on symptoms or via imaging scans (such as ultrasounds or magnetic resonance imaging).
But there remains several other barriers that continue to contribute to significant delays. These include the very high prevalence of period pain in general, with over 90% of young Australian women and girls reporting regular period pain (here), which is often severe. This has led to pain, even if quite severe, to commonly be normalised by society.
GPs in Australia also report many challenges with diagnosis, including a lack of proactive reporting of symptoms by patients, short consultation times and a broad overlap of symptoms between endometriosis and other conditions such as irritable bowel syndrome. Improvements in non-invasive diagnosis, with current possibilities ranging from a saliva test to artificial intelligence-enhanced imaging scans, could be a significant game-changer, for both GPs and gynaecologists, to move away from the long waiting times or the out-of-pocket costs that come with needing surgery.
Surgical removal of endometriosis lesions is currently the gold standard of treatment. However, many questions remain unanswered, including the impact of repeat surgeries (where more may not be better), how long does symptom-relief last after the operation, or when is the best time to have surgery for those trying to fall pregnant. Although surgery does lead to symptom resolution in many women, unfortunately for many others this is only temporary. Current best-case data suggest up to a third of patients require subsequent surgery within ten years, even when the surgery is performed by an expert, high volume endometriosis surgeon.
Understanding the short and long term outcomes and impact of surgery (including different techniques) will allow doctors to provide much better guidance and advice on likely results from surgery and allow their patients to make a more informed choice.
Current medical management strategies are often suboptimal, with less than a quarter of patients with endometriosis in Australia reporting being happy with their ability to manage symptoms. This may be due to either a lack of effectiveness, high incidence of side effects, or high costs (here).
Some emerging and novel treatments that show potential for endometriosis-related pain and other symptoms include medicinal cannabis and dichloroacetate (repurposed medication previously used for metabolic disorders) (here). High level evidence via randomised controlled trials is still lacking, but work is progressing on this, including several clinical trials being run in Australia.
People with endometriosis report significant out-of-pocket costs on everything from surgery to allied health and complementary therapies. In addition, many report having to work part time or reduce their working hours due to the disease, further adding to the financial strain. Development of support programs such as the Endo@Work program, a partnership between Western Sydney University and Endometriosis Australia, are aimed at helping people with endometriosis be able to achieve their potential at work and reduce some of the inequities commonly reported.
Despite the significant personal and societal burdens, endometriosis research has historically been underfunded and under-researched when compared with other chronic conditions with a similar prevalence and health care burden (eg, diabetes), leading to limited understanding of the disease aetiology and slow innovations in new diagnostic and treatment options.
Although over $29 million in research funding has been provided by the government so far, which has never been greater for endometriosis research, this is only around one days’ worth of the economic impact.
In the end, the burden of endometriosis goes beyond those with the disease and their families, or the health care providers who treat them, but requires a concerted effort including the government and health care system more broadly.
We must listen to the needs of women with endometriosis, tailoring research and associated funding to be able to answer the key questions they have identified as their top priority. Only this way can doctors provide quicker diagnosis, improved treatment options and more accurate information for the one in nine women in Australia with endometriosis.
Associate Professor Mike Armour PhD is an Associate Professor in Reproductive Health at the NICM Health Research Institute at Western Sydney University, and the chair of Endometriosis Australia’s Clinical Advisory Committee.
Dr Cecilia Ng PhD manages the National Endometriosis Clinical and Scientific Trials Network, and is a scientist and researcher at the School of Clinical Medicine, UNSW Sydney.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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I’m a rural / regional obstetrician / gynaecologist. I can’t help women with endometriosis any more than doing surgery every few years, hormonal suppression of menstruation and “talking”. I can’t remove women’s chronic pain, nor improve their ability to fully engage with life.
There is much in the media about the delay to diagnosis, but what can we do to help?
“These include the very high prevalence of period pain in general, with over 90% of young Australian women and girls reporting regular period pain (here), which is often severe. This has led to pain, even if quite severe, to commonly be normalised by society.”
Isn’t that ‘normal’ by definition, if it occurs naturally in over 90% of the population? Whether it is unpleasant like death (which occurs naturally in 100% of the population), it is still ‘normal’.