Our study found that females with CPP, irrespective of diagnosis or lack thereof, reported a high prevalence of pelvic pain symptoms, with a profoundly negative impact on quality of life and an early onset of symptoms (under 20 years of age). All clinical symptoms of pelvic pain were commonly reported, with dysmenorrhoea being the most common. Chronic fatigue was one of the most prevalent non-gynaecological symptoms, reported by more than 45% of respondents, significantly greater than the prevalence in the general population25. This supports other research that fatigue should be considered a characteristic symptom related to endometriosis and other forms of CPP 26. The impact of pelvic pain symptoms on education, work, and relationships for this large cohort of respondents, highlights the significant burden for individuals, their whānau (family) and wider society, given that an estimated quarter of the female population of Aotearoa New Zealand suffers CPP to some degree 15.
Interestingly, results from our study have found that CPP symptoms are similar when looking at the impact of symptoms on individuals, regardless of the aetiology of the pain. This finding that the symptoms rather than the underlying cause of these symptoms, is a crucial factor in the negative impact observed and is consistent with international evidence 11,27. In Australia, there is some evidence to suggest that the focus of healthcare provision has been for those formally diagnosed with endometriosis, while experiences of women with CPP without a diagnosis of endometriosis are often invalidated28. Given the clear negative impact on quality of life for all respondents included in this study, it is important that healthcare and support are provided for all causes of CPP in Aotearoa New Zealand, rather than focussing on endometriosis alone.
Our study has provided new data demonstrating diagnostic delay of endometriosis in Aotearoa New Zealand. Similarly to the previous Australian study11, we found the overall diagnostic delay was approximately eight years, with components of diagnostic delay for endometriosis, time to presentation to a health professional and time from presentation to diagnosis, decreasing over time. It is likely that the publication of diagnostic guidelines from ESHRE and WES11,23,29 have contributed to the reduction in time between presentation and diagnosis, and the number of doctors seen before a diagnosis. The reduction in delay between symptom onset and presentation is likely due to an increasing public awareness over time of endometriosis and other forms of secondary dysmenorrhea or CPP. This increase in consumer and practitioner awareness of endometriosis and CPP, has been driven by advocacy groups, such as Endometriosis New Zealand and high-profile coverage in the national media. Although there is no formal compulsory educational curriculum that focuses on CPP in Aotearoa New Zealand, the Menstrual Health and Endometriosis or me® secondary schools education programme has shown significant improvement of menstrual health literacy leading to awareness and earlier presentation to health services to address symptoms in young people18. Such programs may play a vital role in encouraging conversations with health professionals with respect to menstrual symptoms30.
Despite reduced diagnostic delay over time, the mean time to diagnosis is still lengthy at over two years, during which time there is demonstrable negative impact across all domains of respondents’ lives. In Aotearoa New Zealand, there are numerous barriers to accessing healthcare 31–34 which may have had an impact on individuals’ ability to navigate the health system to diagnose and manage their CPP or endometriosis. These include practitioner bias, logistical, and financial barriers 33, as well as significant inequities, with ethnic minorities experiencing poorer health outcomes 35–37. For CPP sufferers, the current healthcare model is inadequate, highlighting a specific area of unmet patient need 38. Furthermore, an extensive body of international literature shows that the culture of normalising CPP may contribute to diagnostic delay, and this normalisation effect may occur both informally and formally when patients are seen by a doctor 39,40. Lack of clinician expertise in gynaecology and missed diagnosis of symptoms may also contribute to diagnostic delay 17,41.
Māori participation within our study was 12.1% of endometriosis respondents and 16.1% of CPP respondents, demonstrating parity with the total Aotearoa New Zealand population, as Māori make up approximately 16% of the population 42. This provides opportunity for further analysis as it is known that Māori engagement with health services is limited for various historical and contemporary reasons 43–46. Although the health-seeking behaviour of Māori is recognised to lead to diagnostic delay for other women’s health issues 47–49, this online survey was able to successfully reach Māori respondents. There was under-representation in the survey from respondents who identified as Pacific Island, Asian and MELAA ethnicities when compared to the population as a whole (total population parity being 8%, 15% and 1.5% respectively) 42. The research team aims to present a sub analysis of data in the context of ethnicity in a later publication.
It is recognised amongst professionals working within this area of health that there is need for a women’s health strategy on the basis of human rights, gender equality and health equity50. Furthermore, this call to action has been signalled globally to improve awareness, fill knowledge gaps, and create effective policy and interventions for the betterment of society 51. In Aotearoa New Zealand, there are currently systematic changes being made to promote equity and efficiency within the public health sector, which are hoped will address CPP and endometriosis outcomes.
National guidelines to promote consistency of care and improve clinical outcomes for those with confirmed or suspected endometriosis have been published by the New Zealand Ministry of Health, 52 and more recently “Endometriosis Clinical Practice Guideline” authored by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG)53. Although RANZCOG is a joint College, this RANZCOG clinical guideline is anticipated to be widely adopted in Aotearoa New Zealand; however, some financial barriers to implementation will need to be overcome. Real time resources and variability of service provision within the country should be fully considered, as previous guiding documents have not done so 52. There is also a shortfall in the national monitoring of disease for individuals with CPP and endometriosis, with the most recent Ministry of Health led national general health survey lacking a specific focus on these conditions 54.
Strengths and weaknesses of the study
The main strength of this study is that it provides data on impact of symptoms for individuals with CPP and endometriosis in Aotearoa New Zealand, where existing literature is limited. This study utilised the WERF EndoCost tool to allow direct comparison with other data sets globally 21, including our Australian counterparts, with whom we share organisations with influence across the Trans-Tasman region, such as RANZCOG. The sample size of 800 respondents was greater than both previous Australian studies. 29 Given the smaller population size in Aotearoa New Zealand, this higher response than previous studies using the WERF EndoCost tool 21 validates the unmet clinical need and strong motivation of this New Zealand cohort to effect change. In terms of study weaknesses, additional recruitment may have been possible if the survey was less extensive. Sampling bias may exist given the recruitment process focused upon online social media platforms which were promoted heavily by author affiliated organisations. Furthermore, it is recognised that respondents who follow these organisations on social media may have a propensity to have more severe symptomatology compounding this sampling bias 55. Given the fragmented district health board system in Aotearoa New Zealand, if this survey was replicated, geographical data could be collected to report on whether location of residence and access to health care services per region may have had a significant impact on results.