EndoCost Aotearoa New Zealand: a Cross-sectional Survey of Chronic Pelvic Pain and Endometriosis

EndoCost Aotearoa New Zealand: a Cross-sectional Survey of Chronic Pelvic Pain and Endometriosis | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article EndoCost Aotearoa New Zealand: a Cross-sectional Survey of Chronic Pelvic Pain and Endometriosis Jordan Tewhaiti-Smith, Alex Semprini, Deborah Bush, Augustus Anderson, and 6 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-1247875/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 9 You are reading this latest preprint version Abstract Chronic pelvic pain (CPP) causes important negative effects on quality of life. Endometriosis is the most common cause of CPP in females, and diagnostic delay is over six years internationally. Data remain scarce for CPP impact or diagnostic delay in Aotearoa New Zealand. This study used an online survey to explore the impact of CPP on various life domains for those aged over 18. Additionally, for those with an endometriosis diagnosis, diagnostic delay and factors affecting this over time were explored. There were 800 respondent (620 with self-reported endometriosis). CPP symptoms, irrespective of final diagnosis, started prior to age 20 and negatively impacted multiple life domains including employment, education, and relationships. Mean diagnostic delay for those with endometriosis was 8.7 years, including 2.9 years between symptom onset and first presentation and 5.8 years between first presentation and diagnosis. Five doctors on average were seen prior to diagnosis. However, there was a reduction in the interval between first presentation and diagnosis over time, from 8.4 years for those presenting before 2005, to two years for those presenting after 2012. While diagnostic delay is decreasing, CPP, irrespective of aetiology, continues to have a significant negative impact on the lives of those affected. Introduction: Chronic pelvic pain (CPP) is defined as pain in the pelvis, which may be intermittent, of greater than six months duration, which is severe enough to cause functional disability or require medical intervention 1 . CPP affects a significant proportion of reproductive-aged females, with worldwide estimates of up to 24-26% 2,3 . Endometriosis, which is the presence of tissue similar to the endometrium (lining of the uterus) outside the uterus 4 , is the most common cause of CPP 5 , accounting for 24-40% of CPP diagnoses 6 , 7 . Internationally, prevalence estimates of endometriosis are between 5% 8 and 11% 9 of reproductive-aged females. Worldwide data demonstrate that endometriosis and CPP has a negative impact on all aspects of an individual’s life 10 – 15 . This negative impact is further compounded by significant diagnostic delay, with reported averages ranging from 6.4 to 13 years 11 , 13 , 14 , 16 , 17 . There is a paucity of prevalence data for CPP and endometriosis in Aotearoa New Zealand; however, older prevalence studies have reported a quarter of females in Aotearoa New Zealand experience some pelvic pain 15 . Furthermore, 27% of school students from Aotearoa New Zealand report they sometimes or always miss school due to menstruation and symptoms related to this 18 , which aligns with similar research conducted in Australia 19 . Given the high prevalence of pelvic pain, understanding the factors contributing to diagnostic delay and symptom presentation in Aotearoa New Zealand is crucial to ameliorate the negative impact of CPP on individuals’ quality of life. Both diagnostic delay and the impact of CPP are likely to vary between countries based on cultural factors, health literacy and access to affordable medical care 11 . Whilst Australian and worldwide data are useful, current data on the impact of pelvic pain in Aotearoa New Zealand is urgently needed to better understand areas of unmet patient need. It is anticipated this will provide information to inform national health strategies, similar to the ‘National Action Plan for Endometriosis’ that has been enacted in Australia 20 . The aim of this cross-sectional national survey is to assess the impact of CPP on social, sexual, occupational, financial, and educational aspects of overall quality of life, within an Aotearoa New Zealand cohort of individuals with self-reported CPP, with or without a formal endometriosis diagnosis. Additionally, for individuals with a diagnosis of endometriosis, diagnostic delay and factors contributing to this delay are explored. Methods: Ethics and Consent The Health and Disability Ethics Committee of New Zealand was consulted and provided confirmation that this survey was out-of-scope for full ethical review. Although not required from an ethics perspective, informed consent was explicitly obtained from respondents before the start of the survey, as best practice when collating personal medical information. Participation was fully anonymised, and respondents could withdraw at any stage before survey submission; however, respondents could not withdraw after submission as no identifying information was collected. All methods described below were performed in accordance with relevant best practice guidelines with oversight from MRINZ and the research team and complies with publication policies set out by Scientific Reports. Online Survey This study utilised the World Endometriosis Research Foundation (WERF) EndoCost tool 21 . The original WERF protocol consisted of validated prospective hospital questionnaires with both retrospective and prospective patient questionnaires 21 . Our study used the 99 item retrospective patient questionnaire component of the EndoCost tool, modified to an Aotearoa New Zealand demographic and healthcare context, and delivered using a REDCap data collection survey 22 . For example, local brand names for pharmaceuticals were used and questions were worded to ensure wide demographic and equitable patient inclusivity. Basic demographic data, including ethnicity data, were collated. This paper reports the survey data regarding diagnosis, education, work, social wellbeing, and recent prevalence (< 3 months) of other pelvic pain symptoms such as dysmenorrhea and dyspareunia. Survey data on the economic analysis and cost of illness burden will be published separately. Recruitment The main method of recruitment was dissemination using social media platforms (Facebook, Instagram and Twitter), driven by the authors and their organisational affiliations, with targeted dissemination to Māori through the first author’s (JTS) academic and social networks. Social media posts were encouraged to be shared and made ‘public’ online. As recruitment aimed to be as inclusive as possible, dissemination through paper recruitment flyers containing the digital survey link was carried out at various private and public hospital gynaecology clinics; three private clinics in Auckland (Auckland Gynaecology Group, Endometriosis Ascot and Shore Women), Christchurch Public Hospital, and two private Christchurch hospital clinics (Oxford Women’s Health, St Georges Hospital). An online participant information sheet was presented before participants started the online survey, highlighting that the survey completion time was expected to take under 60 minutes. The survey was open for 10 weeks from March 2021 to May 2021. Study population Respondents were eligible to participate if they were aged 18 and over, currently living in Aotearoa New Zealand and affected by CPP (defined as pain in the lower abdomen lasting for at least 6 months that was severe enough to limit function for activities of daily life or require medical intervention), with at least one of the following symptoms: dysmenorrhea, dyspareunia or dyschezia. Analyses Statistical analysis was undertaken by the Medical Research Institute of New Zealand (MRINZ) using SAS version 9.4. Data descriptions were reported by mean and standard deviation, or medians and interquartile ranges. Categorical values were described by counts and proportions expressed as percentages. For data needing comparison between groups, t-tests, chi-square tests or Fisher’s exact were used. The impact of publication of major endometriosis diagnostic guidelines on diagnostic delay was explored a priori , in keeping with previous studies in Australia 11 . The Society of Human Reproduction and Embryology (ESHRE) diagnostic guidelines were published in 2005 23 ; both the World Endometriosis Society (WES) diagnostic guidelines 10 and updated ESHRE 24 guidelines were published in 2013. Therefore, analyses for diagnostic delay used three groups: presentation to doctor before 2005, presentation between 2005 and 2012, and presentation after 2012. For each group, Pearson’s and Spearman’s rank correlations were used to estimate the correlation between first presentation to a doctor, number of years to diagnosis, number of doctors consulted until diagnosis, the year when symptoms started and delay in accessing medical care. Results: Demographic data: There was a total of 800 surveys completed. Amongst these, 620 respondents self-reported a laparoscopic diagnosis of endometriosis whilst 180 respondents reported CPP, either from another diagnosis (e.g. painful bladder syndrome, vulvodynia) or without a formal diagnosis of endometriosis. Demographic data are reported in Table 1 . The majority of respondents were European, followed thereafter by Māori, Asian, Pacific, and Middle Eastern, Latin American and African (MELAA), respectively. The majority of respondents had no children. Most respondents reported university level education, closely followed by postgraduate studies, post-secondary studies (not in university) and then upper secondary school. Personal income data showed that most respondents were in the income bracket “ $ 501 to $ 1500 (New Zealand dollars) per week”. Table 1 Demographic data Variable Endometriosis (N=620) CPP (N=180) Mean (SD) Mean (SD) Age (Range from 18 to 74) 31.84 (8.05) 29.99 (7.96) Occupation a Employee 443 (71.5) 115 (63.9) Self-employed 64 (10.3) 20 (11.1) Home duties/caring for children or family 66 (10.6) 20 (11.1) In education 92 (14.8) 44 (24.4) Doing voluntary work 21 (3.4) 10 (5.6) Unable to work because of CPP symptoms 54 (8.7) 23 (12.8) Unable to work for other reasons 19 (3.1) 11 (6.1) Other 11 (1.8) 6 (3.3) Ethnicity a European 513 (82.7) 141 (78.3) Māori 75 (12.1) 29 (16.1) Pacific 9 (1.5) 5 (2.8) Asian 17 (2.7) 4 (2.2) MELAA 6 (1) 1 (0.6) Parity Nulliparous 456 (73.5) 131 (72.8) Parous 164 (26.5) 49 (27.2) Highest level of education Primary school 4 (0.6) 1 (0.6) Lower secondary (Year 10) 10 (1.6) 5 (2.8) Upper secondary (Year 12) 86 (13.9) 22 (12.2) Post-secondary, not university 127 (20.5) 41 (22.8) University 240 (38.7) 70 (38.9) Postgraduate 143 (23.1) 35 (19.4) Prefer not to answer 10 (1.6) 6 (3.3) Personal income level $ 4500 per week 6 (1) 0 (0) Prefer not to answer 38 (6.1) 12 (6.7) a respondents were able to select more than one option Diagnostic delay: The data related to diagnostic delay are reported in Table 2 . The mean time between symptom onset and first presentation to a doctor was 2.88 ± 4.04 years for respondents with endometriosis and 2.44 ± 3.63 years for respondents with CPP. In those with a diagnosis of endometriosis, the mean time between the first presentation to a doctor and diagnosis was 5.79 ± 5.7 years. The mean number of doctors seen prior to their formal diagnosis of endometriosis was 4.83 ± 3.77 . Table 2 Diagnostic delay and pelvic pain symptoms Variable Endometriosis (N=620) CPP (N=180) N Mean (SD) N Mean (SD) Age when symptoms first started b 613 19.93 (6.05) 178 18.66 (6.82) Time between symptom onset and 1st doctors visit (years) b 604 2.88 (4.04) 176 2.44 (3.63) Time between 1st doctors visit and diagnosis of endometriosis (years) b 615 5.79 (5.7) NA Number of doctors seen before diagnosis of endometriosis b 613 4.83 (3.77) NA Pelvic pain symptoms at onset of symptoms a N (%) N (%) Severe dysmenorrhoea 550 (88.7) 157 (87.2) Non-cyclical pelvic pain 399 (64.4) 128 (71.1) Ovulation pain 286 (46.1) 87 (48.3) Chronic fatigue 287 (46.3) 82 (45.6) Cyclical/peri-menstrual symptoms 248 (40) 74 (41.1) Deep dyspareunia 173 (27.9) 52 (28.9) Subfertility 45 (7.3) 10 (5.6) Variable Endometriosis (N=617) CPP (N=180) Pelvic pain with periods in the last 3 months b N (%) N (%) No 102 (16.5) 14 (7.8) Yes 515 (83.5) 166 (92.2) Variable Endometriosis (N=513) CPP (N=165) Pelvic pain frequency b N (%) N (%) Occasionally (with 1 of my last 3 periods) 30 (5.8) 5 (3) Often (with 2 in 3 of my last 3 periods) 54 (10.5) 13 (7.9) Always (with all of my last 3 periods) 429 (83.6) 147 (89.1) Variable Endometriosis (N=515) CPP (N=166) Taken prescribed painkillers b N (%) N (%) No 122 (23.7) 38 (22.9) Yes 393 (76.3) 128 (77.1) Variable Endometriosis (N=513) CPP (N=166) Taken over the counter painkillers N (%) N (%) No 87 (17) 38 (22.9) Yes 426 (83) 128 (77.1) a respondents were able to select more than one option b respondents were not required to answer all question fields in the survey With respect to the impact of diagnostic endometriosis guidelines, before 2005 the mean delay from presentation to diagnosis was 8.38 ± 7.01 years, from 2005 to 2012 was 5.26 ± 3.96 years and after 2012 was 2.01 ± 1.89 years. There was also a weak negative correlation between the year of the first doctor’s visit and the number of doctors consulted until diagnosis of endometriosis (r=0.18 and p=<0.0001). There was a moderate negative correlation between the year of the first presentation to a doctor for those with a diagnosis of endometriosis (r=-0.60, p=<0.0001), and a weak to moderate negative correlation for those with CPP (r=-0.32, p=<0.0001), suggesting less delay for both groups in seeking medical attention over time. Pelvic pain symptoms: The data relating to symptoms are presented in Table 2 . The mean age of symptom onset was under 20 years in both groups. Most respondents within the endometriosis group reported their endometriosis was stage III or stage IV (30.2% and 27.3%, respectively) at their most recent laparoscopy. Severe dysmenorrhoea (period pain) was the most common pelvic pain symptom and was similar between groups (88.7% of endometriosis respondents and 87.2% of CPP respondents). The majority of respondents had experienced pelvic pain with periods within the last three months (83.5% of endometriosis respondents and 92.2% of CPP respondents) and reported the need for either over the counter or prescribed pain medications. Most respondents reported the frequency of their pelvic pain as occurring with every period (83.6 of endometriosis respondents and 89.1% of CPP respondents) or with 2 out of 3 periods (10.5% and 7.9% respectively). Impact of pelvic pain: The data relating to the impact of pelvic pain for respondents are presented in Table 3 , showing significant effects on all social domains assessed in this online survey. These included an impact on education, work, as well as sexual and other personal relationships. Table 3 Impact of pelvic pain symptoms on daily life Variable Endometriosis N/620 (%) CPP N/180 (%) Period pain prevented attending work or carrying out daily activities in the last 3 months b N=511 N=166 Never 58 (11.4) 9 (5.4) Occasionally (in 1 of my last 3 periods) 150 (29.4) 41 (24.7) Often (in 2 of my last 3 periods) 136 (26.6) 51 (30.7) Always (in all of my last 3 periods) 167 (32.7) 65 (39.2) Pelvic pain during sex, or within 24 hours, within the last 3 months b N=617 N=178 Not applicable: I have not had sex in the last 3 months 119 (19.3) 35 (19.7) No 63 (10.2) 13 (7.3) Yes 418 (67.7) 122 (68.5) I don't wish to answer these questions 17 (2.8) 8 (4.5) Frequency of pelvic pain during sex, or within 24 hours b N=416 N=121 Never 3 (0.7) 1 (0.8) Occasionally (with less than a quarter of my periods) 75 (18) 26 (21.5) Often (a quarter to half of the times) 69 (16.6) 17 (14) Usually (more than half of the times) 120 (28.8) 34 (28.1) Always (every time) 148 (35.6) 42 (34.7) Can't remember 1 (0.2) 1 (0.8) Ever interrupted sex because of pelvic pain b N=420 N=122 No 81 (19.3) 22 (18) Yes 339 (80.7) 100 (82) Ever avoided sex because of pelvic pain b N=418 N=122 No 80 (19.1) 23 (18.9) Yes 338 (80.9) 99 (81.1) CPP ever affecting personal relationship negatively b N=476 N=127 No 108 (22.7) 32 (25.2) Yes 368 (77.3) 95 (74.8) How did it affect relationships? a b N=368 N=95 Caused significant problems with partner 245 (66.6) 64 (67.4) Created problems with family 107 (29.1) 30 (31.6) Caused a relationship to split 80 (21.7) 12 (12.6) Made it difficult to look after children 76 (20.7) 29 (30.5) Affected friendships 218 (59.2) 53 (55.8) Lost time to education due to chronic pelvic pain b No 159 (33.3) 42 (33.1) Yes 318 (66.7) 85 (66.9) Effect on education a b N=318 N=85 Gave up studies 76 (23.9) 19 (22.4) Changed studies 35 (11) 6 (7.1) Delayed exams or postponed assignments 169 (53.1) 45 (52.9) Other 87 (27.4) 30 (35.3) Chronic pelvic pain affecting job b N=474 N=124 Yes 363 (76.6) 90 (72.6) No 74 (15.6) 15 (12.1) N/A - not employed in the last 12 months 37 (7.8) 19 (15.3) How did it affect work? b N=363 N=90 Lost job 47 (12.9) 7 (7.8) Changed job 41 (11.3) 8 (8.9) Reduced work hours 191 (52.6) 49 (54.4) Other 161 (44.4) 39 (43.3) Occasions where a woman was scared to tell their employer about CPP because of fear that it might affect your prospects? b N=473 N=121 No 128 (27.1) 34 (28.1) Yes 345 (72.9) 87 (71.9) a respondents were able to select more than one option b respondents were not required to answer all question fields in the survey The mean days of studying lost per month by endometriosis and CPP respondents was 8.03 ± 18.26 and 10.24 ± 40.65 respectively, with almost half of respondents reporting delayed exams or postponed assignments and a proportion of respondents giving up studying completely (23.9% of endometriosis respondents and 22.4% of CPP respondents). The mean days taken off work per month for endometriosis and CPP respondents were 3.15 ± 3.38 and 2.86 ± 2.89 respectively, with more than half of respondents needing to work reduced hours. There were 88.7% of endometriosis respondents and 94.6% of CPP respondents that reported being unable to attend work, or carry our daily activities, due to period pain for at least one of their last three periods. Across both groups there was a proportion unable to work over the last 12 months because of pelvic pain symptoms (7.8% of endometriosis respondents and 15.3% CPP respondents) and further to this, 12.9% of endometriosis respondents and 7.8% of CPP respondents lost their jobs due to their symptoms. The majority of respondents in both groups reported effect on their employment with over 70% having either lost their jobs, changed their jobs or reduced their working hours due to symptoms. In both groups, around two thirds of respondents reported that pelvic pain had caused significant problems with their partner, whilst over half of respondents reported it had affected their friendships. Two thirds of respondents in both groups experienced pelvic pain during sex, or within 24 hours of sex, over the last 3 months. Most respondents indicated that pelvic pain had previously caused them to interrupt and avoid sex. More than half of respondents reported that social activities with families were affected ‘moderately’ (27.9% endometriosis respondents and 28% CPP respondents), ‘quite a bit’ (25.6% endometriosis respondents and 28% CPP respondents), and ‘extremely’ (10.5% endometriosis respondents and 16.6% CPP respondents). Discussion: 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 population 25 . 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 invalidated 28 . 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 study 11 , 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 WES 11 , 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 people 18 . Such programs may play a vital role in encouraging conversations with health professionals with respect to menstrual symptoms 30 . 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 equity 50 . 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. Conclusion: Those living with endometriosis and CPP in Aotearoa New Zealand experience a high prevalence of symptoms with a profound impact on many aspects of their lives, regardless of whether there was a formal diagnosis of endometriosis or not. Despite substantial improvements over time, there remains a significant diagnostic delay from symptom onset to formal diagnosis of endometriosis. There is an urgent need for targeted resourcing in Aotearoa New Zealand to improve the diagnosis and management of CPP, including education and research programmes. Declarations Data Availability: The analysis of data relating to the results above are available from the corresponding authors upon reasonable request. Acknowledgements: The research team would like to acknowledge respondents who provided invaluable insight into the data gathered, and specifically to those involved in promotion and recruitment of respondents within the survey. Competing Interests: DB owns the IP of the me® programme on a no royalty of license fee basis. NJ is past president of the World Endometriosis Society and reports personal fees from Abbott, Guerbet, Myovant Sciences, Vifor Pharma and Roche Diagnostics outside the submitted work. Other authors declare no competing interests. Author Contributions: All authors contributed significantly to this work. JTS, MA and AS designed the study using the WERF EndoCost tool and learnings taken from the previous Australian survey 11,29 . JTS, MA, AS and DB designed the recruitment strategy for an Aotearoa New Zealand context and initially promoted the research material, however further recruitment efforts were assisted by all members of the research team. 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Invest. 71 , 170–176 (2011). Harris, P. A. et al. Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. J. Biomed. Inform. 42 , 377–381 (2009). Kennedy, S. et al. ESHRE guideline for the diagnosis and treatment of endometriosis. Hum. Reprod. 20 , 2698–2704 (2005). Dunselman, G. A. J. et al. ESHRE guideline: management of women with endometriosis. Hum. Reprod. 29 , 400–412 (2014). Lim, E.-J. et al. Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). J. Transl. Med. 18 , 100 (2020). Ramin-Wright, A. et al. Fatigue – a symptom in endometriosis. Hum. Reprod. 33 , 1459–1465 (2018). Tripoli, T. M. et al. Evaluation of Quality of Life and Sexual Satisfaction in Women Suffering from Chronic Pelvic Pain With or Without Endometriosis. J. Sex. Med. 8 , 497–503 (2011). Armour, M., Hawkey, A., Sowbhagya, M., Diezel, H. & Chalmers, K. J. ‘A day to day struggle’: A comparative qualitative study of experiences of women with endometriosis and chronic pelvic pain. Prepr. (Version 1) Available Res. Sq. (2021) doi: 10.21203/rs.3.rs-289745/v1 . Armour, M., Lawson, K., Wood, A., Smith, C. A. & Abbott, J. The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: A national online survey. PLoS One 14 , e0223316 (2019). Armour, M. et al. Menstrual Health Literacy and Management Strategies in Young Women in Australia: A National Online Survey of Young Women Aged 13-25 Years. J. Pediatr. Adolesc. Gynecol. 34 , 135–143 (2021). Crampton, P., Weaver, N. & Howard, A. Holding a mirror to society? The sociodemographic characteristics of the University of Otago’s health professional students. New Zealan 125 , 12–29 (2012). Salmond, C., Crampton, P., King, P. & Waldegrave, C. NZiDep: A New Zealand index of socioeconomic deprivation for individuals. Soc. Sci. Med. 62 , 1474–1485 (2006). Jatrana, S. & Crampton, P. Gender differences in financial barriers to primary health care in New Zealand. J. Prim. Health Care 4 , 113 (2012). Jatrana, S. & Crampton, P. Primary health care in New Zealand: Who has access? Health Policy (New. York) . 93 , 1–10 (2009). Ministry of Health. New Zealand Health Survey: Annual update of key findings 2012/13 . (2013). Ministry of Health. Annual Update of Key Results 2015/16: New Zealand Health Survey . (2016). Ministry of Health. Annual Data Explorer 2019/20: New Zealand Health Survey. (2020). Joseph, K. & Mills, J. Unmet treatment needs in patients with chronic pelvic pain in a New Zealand gynaecology service. Aust. New Zeal. J. Obstet. Gynaecol. 59 , 856–860 (2019). Armour, M., Dahlen, H. G. & Smith, C. A. More Than Needles: The Importance of Explanations and Self-Care Advice in Treating Primary Dysmenorrhea with Acupuncture. Evidence-Based Complement. Altern. Med. 2016, 1–11 (2016). Wong, L. P. Attitudes towards dysmenorrhoea, impact and treatment seeking among adolescent girls: A rural school-based survey. Aust. J. Rural Health 19 , 218–223 (2011). Agarwal, S. K. et al. Clinical diagnosis of endometriosis: a call to action. Am. J. Obstet. Gynecol. 220 , 354.e1-354.e12 (2019). Statistics New Zealand. 2018 Census ethnic group summaries. (2018). Harris, R. et al. Effects of self-reported racial discrimination and deprivation on Māori health and inequalities in New Zealand: cross-sectional study. Lancet 367 , 2005–2009 (2006). Ratima, M. M. et al. Strengthening Māori participation in the New Zealand health and disability workforce. Med. J. Aust. 186 , 541–3 (2007). Medical Council of New Zealand. Best health outcomes for Maori: Practice implications . https://www.mcnz.org.nz/assets/News-and-Publications/Statements/Best-health-outcomes-for-Maori.pdf (2006). Robson, B. & Ellison-Loschmann, L. Māori and cancer care in Aotearoa/New Zealand - responses to disparities. Eur. J. Cancer Care (Engl). 25 , 214–218 (2016). Priest, P. et al. Determinants of inequalities in cervical cancer stage at diagnosis and survival in New Zealand. Cancer Causes Control 21 , 209–214 (2010). Priest, P. et al. Pathways to diagnosis of cervical cancer: screening history, delay in follow up, and smear reading. BJOG An Int. J. Obstet. Gynaecol. 114 , 398–407 (2007). McLeod, M. et al. Improving survival disparities in cervical cancer between Māori and non-Māori women in New Zealand: a national retrospective cohort study. Aust. N. Z. J. Public Health 34 , 193–199 (2010). Women’s Health Action. A Case for a National Women’s Health Strategy in Aotearoa New Zealand by Women’s Health Action . (2014). World Health Organization. Endometriosis. https://www.who.int/news-room/fact-sheets/detail/endometriosis (2021). Ministry of Health. Diagnosis and Management of Endometriosis in New Zealand . (2020). The Royal Australian and New Zealand College of Obstetricians and Gynaecologists. Endometriosis Clincial Practice Guidelines . (2021). Ministry of Health. Content Guide 2019/20: New Zaland Health Survey . (2020). De Graaff, A. A. et al. Quality of life outcomes in women with endometriosis are highly influenced by recruitment strategies. Hum. Reprod. 30 , 1331–1341 (2015). Additional Declarations No competing interests reported. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-1247875","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":76609911,"identity":"cc5f1860-acba-4f66-b386-434050b427b7","order_by":0,"name":"Jordan Tewhaiti-Smith","email":"data:image/png;base64,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","orcid":"","institution":"Medical Research Institute of New Zealand, Wellington Hospital","correspondingAuthor":true,"prefix":"","firstName":"Jordan","middleName":"","lastName":"Tewhaiti-Smith","suffix":""},{"id":76609912,"identity":"b9d5b437-113c-4031-91b3-5b10908736e0","order_by":1,"name":"Alex Semprini","email":"","orcid":"","institution":"Medical Research Institute of New Zealand, Wellington Hospital","correspondingAuthor":false,"prefix":"","firstName":"Alex","middleName":"","lastName":"Semprini","suffix":""},{"id":76609913,"identity":"2a0525c0-1e24-4b71-a6bf-6522e28ffbc1","order_by":2,"name":"Deborah Bush","email":"","orcid":"","institution":"Endometriosis New Zealand","correspondingAuthor":false,"prefix":"","firstName":"Deborah","middleName":"","lastName":"Bush","suffix":""},{"id":76609914,"identity":"2c3658fd-02f3-4e52-87d5-f74a57c7656b","order_by":3,"name":"Augustus Anderson","email":"","orcid":"","institution":"Medical Research Institute of New Zealand, Wellington Hospital","correspondingAuthor":false,"prefix":"","firstName":"Augustus","middleName":"","lastName":"Anderson","suffix":""},{"id":76609915,"identity":"c627c4b7-546f-4582-a4ee-dce9110c719c","order_by":4,"name":"Allie Eathorne","email":"","orcid":"","institution":"Medical Research Institute of New Zealand, Wellington Hospital","correspondingAuthor":false,"prefix":"","firstName":"Allie","middleName":"","lastName":"Eathorne","suffix":""},{"id":76609916,"identity":"a45b2e7d-fe72-400c-ad08-da1416f51856","order_by":5,"name":"Neil Johnson","email":"","orcid":"","institution":"University of Adelaide","correspondingAuthor":false,"prefix":"","firstName":"Neil","middleName":"","lastName":"Johnson","suffix":""},{"id":76609917,"identity":"44f86c6d-93ad-4f40-bddc-eadafecb32f1","order_by":6,"name":"Jane Girling","email":"","orcid":"","institution":"University of Otago","correspondingAuthor":false,"prefix":"","firstName":"Jane","middleName":"","lastName":"Girling","suffix":""},{"id":76609918,"identity":"2e68084a-6107-4f4e-b96d-ac4f8e861104","order_by":7,"name":"Michael East","email":"","orcid":"","institution":"Oxford Women’s Health, Forte Hospital","correspondingAuthor":false,"prefix":"","firstName":"Michael","middleName":"","lastName":"East","suffix":""},{"id":76609919,"identity":"255a5896-aaf2-4a4c-9113-a0b6801c814b","order_by":8,"name":"Joy Marriott","email":"","orcid":"","institution":"University of Auckland","correspondingAuthor":false,"prefix":"","firstName":"Joy","middleName":"","lastName":"Marriott","suffix":""},{"id":76609920,"identity":"77c13423-afcd-4f17-a0a1-3cf53dc494e6","order_by":9,"name":"Mike Armour","email":"","orcid":"","institution":"Medical Research Institute of New Zealand, Wellington Hospital","correspondingAuthor":false,"prefix":"","firstName":"Mike","middleName":"","lastName":"Armour","suffix":""}],"badges":[],"createdAt":"2022-01-10 22:44:01","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-1247875/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-1247875/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":17386168,"identity":"dc117e11-5092-4928-8eca-68cc38efa6ef","added_by":"auto","created_at":"2022-01-17 15:45:38","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":689466,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-1247875/v1/15b059de-fa15-4401-a4c7-3aa034950fc3.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003eEndoCost Aotearoa New Zealand: a Cross-sectional Survey of Chronic Pelvic Pain and Endometriosis\u003c/p\u003e","fulltext":[{"header":"Introduction:","content":"\u003cp\u003eChronic pelvic pain (CPP) is defined as pain in the pelvis, which may be intermittent, of greater than six months duration, which is severe enough to cause functional disability or require medical intervention \u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u003c/sup\u003e. CPP affects a significant proportion of reproductive-aged females, with worldwide estimates of up to 24-26% \u003csup\u003e2,3\u003c/sup\u003e. Endometriosis, which is the presence of tissue similar to the endometrium (lining of the uterus) outside the uterus \u003csup\u003e\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u003c/sup\u003e, is the most common cause of CPP \u003csup\u003e\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u003c/sup\u003e, accounting for 24-40% of CPP diagnoses \u003csup\u003e\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e,\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e. Internationally, prevalence estimates of endometriosis are between 5% \u003csup\u003e8\u003c/sup\u003e and 11% \u003csup\u003e9\u003c/sup\u003e of reproductive-aged females. Worldwide data demonstrate that endometriosis and CPP has a negative impact on all aspects of an individual\u0026rsquo;s life \u003csup\u003e\u003cspan additionalcitationids=\"CR11 CR12 CR13 CR14\" citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e. This negative impact is further compounded by significant diagnostic delay, with reported averages ranging from 6.4 to 13 years \u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e,\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e,\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e,\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e,\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e. There is a paucity of prevalence data for CPP and endometriosis in Aotearoa New Zealand; however, older prevalence studies have reported a quarter of females in Aotearoa New Zealand experience some pelvic pain \u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e. Furthermore, 27% of school students from Aotearoa New Zealand report they sometimes or always miss school due to menstruation and symptoms related to this \u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e, which aligns with similar research conducted in Australia \u003csup\u003e\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u003c/sup\u003e. Given the high prevalence of pelvic pain, understanding the factors contributing to diagnostic delay and symptom presentation in Aotearoa New Zealand is crucial to ameliorate the negative impact of CPP on individuals\u0026rsquo; quality of life.\u003c/p\u003e \u003cp\u003eBoth diagnostic delay and the impact of CPP are likely to vary between countries based on cultural factors, health literacy and access to affordable medical care \u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e. Whilst Australian and worldwide data are useful, current data on the impact of pelvic pain in Aotearoa New Zealand is urgently needed to better understand areas of unmet patient need. It is anticipated this will provide information to inform national health strategies, similar to the \u0026lsquo;National Action Plan for Endometriosis\u0026rsquo; that has been enacted in Australia \u003csup\u003e\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eThe aim of this cross-sectional national survey is to assess the impact of CPP on social, sexual, occupational, financial, and educational aspects of overall quality of life, within an Aotearoa New Zealand cohort of individuals with self-reported CPP, with or without a formal endometriosis diagnosis. Additionally, for individuals with a diagnosis of endometriosis, diagnostic delay and factors contributing to this delay are explored.\u003c/p\u003e"},{"header":"Methods:","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eEthics and Consent\u003c/h2\u003e \u003cp\u003eThe Health and Disability Ethics Committee of New Zealand was consulted and provided confirmation that this survey was out-of-scope for full ethical review. Although not required from an ethics perspective, informed consent was explicitly obtained from respondents before the start of the survey, as best practice when collating personal medical information. Participation was fully anonymised, and respondents could withdraw at any stage before survey submission; however, respondents could not withdraw after submission as no identifying information was collected. All methods described below were performed in accordance with relevant best practice guidelines with oversight from MRINZ and the research team and complies with publication policies set out by Scientific Reports.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eOnline Survey\u003c/h2\u003e \u003cp\u003eThis study utilised the World Endometriosis Research Foundation (WERF) EndoCost tool \u003csup\u003e\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e. The original WERF protocol consisted of validated prospective hospital questionnaires with both retrospective and prospective patient questionnaires \u003csup\u003e\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e. Our study used the 99 item retrospective patient questionnaire component of the EndoCost tool, modified to an Aotearoa New Zealand demographic and healthcare context, and delivered using a REDCap data collection survey\u003csup\u003e\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u003c/sup\u003e. For example, local brand names for pharmaceuticals were used and questions were worded to ensure wide demographic and equitable patient inclusivity. Basic demographic data, including ethnicity data, were collated. This paper reports the survey data regarding diagnosis, education, work, social wellbeing, and recent prevalence (\u0026lt; 3 months) of other pelvic pain symptoms such as dysmenorrhea and dyspareunia. Survey data on the economic analysis and cost of illness burden will be published separately.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eRecruitment\u003c/h2\u003e \u003cp\u003eThe main method of recruitment was dissemination using social media platforms (Facebook, Instagram and Twitter), driven by the authors and their organisational affiliations, with targeted dissemination to Māori through the first author\u0026rsquo;s (JTS) academic and social networks. Social media posts were encouraged to be shared and made \u0026lsquo;public\u0026rsquo; online. As recruitment aimed to be as inclusive as possible, dissemination through paper recruitment flyers containing the digital survey link was carried out at various private and public hospital gynaecology clinics; three private clinics in Auckland (Auckland Gynaecology Group, Endometriosis Ascot and Shore Women), Christchurch Public Hospital, and two private Christchurch hospital clinics (Oxford Women\u0026rsquo;s Health, St Georges Hospital). An online participant information sheet was presented before participants started the online survey, highlighting that the survey completion time was expected to take under 60 minutes. The survey was open for 10 weeks from March 2021 to May 2021.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eStudy population\u003c/h2\u003e \u003cp\u003eRespondents were eligible to participate if they were aged 18 and over, currently living in Aotearoa New Zealand and affected by CPP (defined as pain in the lower abdomen lasting for at least 6 months that was severe enough to limit function for activities of daily life or require medical intervention), with at least one of the following symptoms: dysmenorrhea, dyspareunia or dyschezia.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eAnalyses\u003c/h2\u003e \u003cp\u003eStatistical analysis was undertaken by the Medical Research Institute of New Zealand (MRINZ) using SAS version 9.4. Data descriptions were reported by mean and standard deviation, or medians and interquartile ranges. Categorical values were described by counts and proportions expressed as percentages. For data needing comparison between groups, t-tests, chi-square tests or Fisher\u0026rsquo;s exact were used.\u003c/p\u003e \u003cp\u003eThe impact of publication of major endometriosis diagnostic guidelines on diagnostic delay was explored \u003cem\u003ea priori\u003c/em\u003e, in keeping with previous studies in Australia \u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e. The Society of Human Reproduction and Embryology (ESHRE) diagnostic guidelines were published in 2005\u003csup\u003e23\u003c/sup\u003e; both the World Endometriosis Society (WES) diagnostic guidelines\u003csup\u003e\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u003c/sup\u003e and updated ESHRE\u003csup\u003e\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u003c/sup\u003e guidelines were published in 2013. Therefore, analyses for diagnostic delay used three groups: presentation to doctor before 2005, presentation between 2005 and 2012, and presentation after 2012. For each group, Pearson\u0026rsquo;s and Spearman\u0026rsquo;s rank correlations were used to estimate the correlation between first presentation to a doctor, number of years to diagnosis, number of doctors consulted until diagnosis, the year when symptoms started and delay in accessing medical care.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results:","content":"\u003cdiv class=\"Section2\" id=\"Sec9\"\u003e\n \u003ch2\u003eDemographic data:\u003c/h2\u003e\n \u003cp\u003eThere was a total of 800 surveys completed. Amongst these, 620 respondents self-reported a laparoscopic diagnosis of endometriosis whilst 180 respondents reported CPP, either from another diagnosis (e.g. painful bladder syndrome, vulvodynia) or without a formal diagnosis of endometriosis. Demographic data are reported in Table \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e. The majority of respondents were European, followed thereafter by Māori, Asian, Pacific, and Middle Eastern, Latin American and African (MELAA), respectively. The majority of respondents had no children. Most respondents reported university level education, closely followed by postgraduate studies, post-secondary studies (not in university) and then upper secondary school. Personal income data showed that most respondents were in the income bracket \u0026ldquo;\u003cspan\u003e$\u003c/span\u003e501 to \u003cspan\u003e$\u003c/span\u003e1500 (New Zealand dollars) per week\u0026rdquo;.\u0026nbsp;\u003c/p\u003e\u0026nbsp;\u003ctable border=\"1\" id=\"Tab1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eDemographic data\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eVariable\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eEndometriosis (N=620)\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eCPP\u003c/p\u003e\n \u003cp\u003e(N=180)\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eMean (SD)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eMean (SD)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge (Range from 18 to 74)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e31.84 (8.05)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e29.99 (7.96)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eOccupation\u003c/strong\u003e\u003csup\u003e\u003cstrong\u003ea\u003c/strong\u003e\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eEmployee\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e443 (71.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e115 (63.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSelf-employed\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e64 (10.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e20 (11.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHome duties/caring for children or family\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e66 (10.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e20 (11.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eIn education\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e92 (14.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e44 (24.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eDoing voluntary work\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e21 (3.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e10 (5.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eUnable to work because of CPP symptoms\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e54 (8.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e23 (12.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eUnable to work for other reasons\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e19 (3.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e11 (6.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e11 (1.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e6 (3.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eEthnicity\u003c/strong\u003e\u003csup\u003e\u003cstrong\u003ea\u003c/strong\u003e\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eEuropean\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e513 (82.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e141 (78.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMāori\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e75 (12.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e29 (16.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003ePacific\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e9 (1.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e5 (2.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAsian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e17 (2.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e4 (2.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMELAA\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e6 (1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1 (0.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eParity\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNulliparous\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e456 (73.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e131 (72.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eParous\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e164 (26.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e49 (27.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eHighest level of education\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003ePrimary school\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e4 (0.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1 (0.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eLower secondary (Year 10)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e10 (1.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e5 (2.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eUpper secondary (Year 12)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e86 (13.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e22 (12.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003ePost-secondary, not university\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e127 (20.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e41 (22.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eUniversity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e240 (38.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e70 (38.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003ePostgraduate\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e143 (23.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e35 (19.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003ePrefer not to answer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e10 (1.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e6 (3.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003ePersonal income level\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u0026lt; \u003cspan\u003e$\u003c/span\u003e500 per week\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e173 (27.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e68 (37.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e501 to \u003cspan\u003e$\u003c/span\u003e1500 per week\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e295 (47.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e74 (41.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e1501 to \u003cspan\u003e$\u003c/span\u003e3000 per week\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e101 (16.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e22 (12.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e3001 to \u003cspan\u003e$\u003c/span\u003e4500 per week\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e7 (1.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e4 (2.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u0026gt; \u003cspan\u003e$\u003c/span\u003e4500 per week\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e6 (1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e0 (0)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003ePrefer not to answer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e38 (6.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e12 (6.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003ctfoot\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\"\u003e\u003csup\u003ea\u003c/sup\u003e respondents were able to select more than one option\u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tfoot\u003e\n \u003c/table\u003e\n \u003ch2 class=\"Section3\" id=\"Sec10\"\u003eDiagnostic delay:\u003c/h2\u003e\n\u003c/div\u003e\n\u003cdiv class=\"Section2\" id=\"Sec11\"\u003e\n \u003cp\u003eThe data related to diagnostic delay are reported in Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e. The mean time between symptom onset and first presentation to a doctor was 2.88 \u0026plusmn; 4.04 years for respondents with endometriosis and 2.44 \u0026plusmn; 3.63 years for respondents with CPP. In those with a diagnosis of endometriosis, the mean time between the first presentation to a doctor and diagnosis was 5.79 \u0026plusmn; 5.7 years. The mean number of doctors seen prior to their formal diagnosis of endometriosis was 4.83 \u0026plusmn; 3.77 .\u003c/p\u003e\n \u003cdiv class=\"gridtable\"\u003e\u0026nbsp;\u003ctable border=\"1\" id=\"Tab2\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eDiagnostic delay and pelvic pain symptoms\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eVariable\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eEndometriosis (N=620)\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eCPP\u003c/p\u003e\n \u003cp\u003e(N=180)\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eN\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eMean (SD)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eN\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eMean (SD)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge when symptoms first started\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e613\u003c/p\u003e\n \u003cp\u003e19.93 (6.05)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e178\u003c/p\u003e\n \u003cp\u003e18.66 (6.82)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eTime between symptom onset and 1st doctors visit (years)\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e604\u003c/p\u003e\n \u003cp\u003e2.88 (4.04)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e176\u003c/p\u003e\n \u003cp\u003e2.44 (3.63)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eTime between 1st doctors visit and diagnosis of endometriosis (years)\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e615\u003c/p\u003e\n \u003cp\u003e5.79 (5.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNA\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber of doctors seen before diagnosis of endometriosis\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e613\u003c/p\u003e\n \u003cp\u003e4.83 (3.77)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNA\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003ePelvic pain symptoms at onset of symptoms\u003c/strong\u003e \u003csup\u003ea\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eN (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eN (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSevere dysmenorrhoea\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e550 (88.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e157 (87.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNon-cyclical pelvic pain\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e399 (64.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e128 (71.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOvulation pain\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e286 (46.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e87 (48.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eChronic fatigue\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e287 (46.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e82 (45.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCyclical/peri-menstrual symptoms\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e248 (40)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e74 (41.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eDeep dyspareunia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e173 (27.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e52 (28.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSubfertility\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e45 (7.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e10 (5.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eVariable\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eEndometriosis (N=617)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eCPP\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(N=180)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003ePelvic pain with periods in the last 3 months\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eN (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eN (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e102 (16.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e14 (7.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e515 (83.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e166 (92.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eVariable\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eEndometriosis (N=513)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eCPP\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(N=165)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003ePelvic pain frequency\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eN (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eN (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOccasionally (with 1 of my last 3 periods)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e30 (5.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e5 (3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOften (with 2 in 3 of my last 3 periods)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e54 (10.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e13 (7.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAlways (with all of my last 3 periods)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e429 (83.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e147 (89.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eVariable\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eEndometriosis (N=515)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eCPP\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(N=166)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eTaken prescribed painkillers\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eN (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eN (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e122 (23.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e38 (22.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e393 (76.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e128 (77.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eVariable\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eEndometriosis (N=513)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eCPP\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(N=166)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eTaken over the counter painkillers\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eN (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eN (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e87 (17)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e38 (22.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e426 (83)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e128 (77.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003ctfoot\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\"\u003e\u003csup\u003ea\u003c/sup\u003e respondents were able to select more than one option\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\"\u003e\u003csup\u003eb\u003c/sup\u003e respondents were not required to answer all question fields in the survey\u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tfoot\u003e\n \u003c/table\u003e\n \u003c/div\u003e\n \u003cp\u003eWith respect to the impact of diagnostic endometriosis guidelines, before 2005 the mean delay from presentation to diagnosis was 8.38 \u0026plusmn; 7.01 years, from 2005 to 2012 was 5.26 \u0026plusmn; 3.96 years and after 2012 was 2.01 \u0026plusmn; 1.89 years. There was also a weak negative correlation between the year of the first doctor\u0026rsquo;s visit and the number of doctors consulted until diagnosis of endometriosis (r=0.18 and p=\u0026lt;0.0001). There was a moderate negative correlation between the year of the first presentation to a doctor for those with a diagnosis of endometriosis (r=-0.60, p=\u0026lt;0.0001), and a weak to moderate negative correlation for those with CPP (r=-0.32, p=\u0026lt;0.0001), suggesting less delay for both groups in seeking medical attention over time.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv class=\"Section2\" id=\"Sec12\"\u003e\n \u003ch2\u003ePelvic pain symptoms:\u003c/h2\u003e\n \u003cp\u003eThe data relating to symptoms are presented in Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e. The mean age of symptom onset was under 20 years in both groups. Most respondents within the endometriosis group reported their endometriosis was stage III or stage IV (30.2% and 27.3%, respectively) at their most recent laparoscopy. Severe dysmenorrhoea (period pain) was the most common pelvic pain symptom and was similar between groups (88.7% of endometriosis respondents and 87.2% of CPP respondents). The majority of respondents had experienced pelvic pain with periods within the last three months (83.5% of endometriosis respondents and 92.2% of CPP respondents) and reported the need for either over the counter or prescribed pain medications. Most respondents reported the frequency of their pelvic pain as occurring with every period (83.6 of endometriosis respondents and 89.1% of CPP respondents) or with 2 out of 3 periods (10.5% and 7.9% respectively).\u003c/p\u003e\n \u003cdiv class=\"Section3\" id=\"Sec13\"\u003e\n \u003cdiv class=\"Section4\" id=\"Sec14\"\u003e\n \u003ch2\u003eImpact of pelvic pain:\u003c/h2\u003e\n \u003cp\u003eThe data relating to the impact of pelvic pain for respondents are presented in Table \u003cspan class=\"InternalRef\"\u003e3\u003c/span\u003e, showing significant effects on all social domains assessed in this online survey. These included an impact on education, work, as well as sexual and other personal relationships.\u003c/p\u003e\n \u003cdiv class=\"gridtable\"\u003e\n \u003ctable border=\"1\" id=\"Tab3\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eImpact of pelvic pain symptoms on daily life\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eVariable\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eEndometriosis\u003c/p\u003e\n \u003cp\u003eN/620 (%)\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eCPP\u003c/p\u003e\n \u003cp\u003eN/180 (%)\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003ePeriod pain prevented attending work or carrying out daily activities in the last 3 months\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=511\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=166\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNever\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e58 (11.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e9 (5.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOccasionally (in 1 of my last 3 periods)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e150 (29.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e41 (24.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOften (in 2 of my last 3 periods)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e136 (26.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e51 (30.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAlways (in all of my last 3 periods)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e167 (32.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e65 (39.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003ePelvic pain during sex, or within 24 hours, within the last 3 months\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=617\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=178\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNot applicable: I have not had sex in the last 3 months\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e119 (19.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e35 (19.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e63 (10.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e13 (7.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e418 (67.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e122 (68.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eI don\u0026apos;t wish to answer these questions\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e17 (2.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e8 (4.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eFrequency of pelvic pain during sex, or within 24 hours\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=416\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=121\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNever\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e3 (0.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1 (0.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOccasionally (with less than a quarter of my periods)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e75 (18)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e26 (21.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOften (a quarter to half of the times)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e69 (16.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e17 (14)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eUsually (more than half of the times)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e120 (28.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e34 (28.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAlways (every time)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e148 (35.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e42 (34.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCan\u0026apos;t remember\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1 (0.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1 (0.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eEver interrupted sex because of pelvic pain\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=420\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=122\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e81 (19.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e22 (18)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e339 (80.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e100 (82)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eEver avoided sex because of pelvic pain\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=418\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=122\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e80 (19.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e23 (18.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e338 (80.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e99 (81.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eCPP ever affecting personal relationship negatively\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=476\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=127\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e108 (22.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e32 (25.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e368 (77.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e95 (74.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eHow did it affect relationships?\u003c/strong\u003e \u003csup\u003ea b\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=368\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=95\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCaused significant problems with partner\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e245 (66.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e64 (67.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCreated problems with family\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e107 (29.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e30 (31.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCaused a relationship to split\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e80 (21.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e12 (12.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMade it difficult to look after children\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e76 (20.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e29 (30.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAffected friendships\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e218 (59.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e53 (55.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eLost time to education due to chronic pelvic pain\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003ctd align=\"left\"\u003e\u0026nbsp;\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e159 (33.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e42 (33.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e318 (66.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e85 (66.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eEffect on education\u003c/strong\u003e \u003csup\u003ea b\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=318\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=85\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eGave up studies\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e76 (23.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e19 (22.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eChanged studies\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e35 (11)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e6 (7.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eDelayed exams or postponed assignments\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e169 (53.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e45 (52.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e87 (27.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e30 (35.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eChronic pelvic pain affecting job\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=474\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=124\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e363 (76.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e90 (72.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e74 (15.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e15 (12.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN/A - not employed in the last 12 months\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e37 (7.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e19 (15.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eHow did it affect work?\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=363\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=90\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eLost job\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e47 (12.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e7 (7.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eChanged job\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e41 (11.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e8 (8.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eReduced work hours\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e191 (52.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e49 (54.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e161 (44.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e39 (43.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eOccasions where a woman was scared to tell their employer about CPP because of fear that it might affect your prospects?\u003c/strong\u003e \u003csup\u003eb\u003c/sup\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=473\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eN=121\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e128 (27.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e34 (28.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e345 (72.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e87 (71.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003ctfoot\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\"\u003e\u003csup\u003ea\u003c/sup\u003e respondents were able to select more than one option\u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\"\u003e\u003csup\u003eb\u003c/sup\u003e respondents were not required to answer all question fields in the survey\u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tfoot\u003e\n \u003c/table\u003e\n \u003c/div\u003e\n \u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n \u003cp\u003eThe mean days of studying lost per month by endometriosis and CPP respondents was 8.03 \u0026plusmn; 18.26 and 10.24 \u0026plusmn; 40.65 respectively, with almost half of respondents reporting delayed exams or postponed assignments and a proportion of respondents giving up studying completely (23.9% of endometriosis respondents and 22.4% of CPP respondents).\u003c/p\u003e\n \u003cp\u003eThe mean days taken off work per month for endometriosis and CPP respondents were 3.15 \u0026plusmn; 3.38 and 2.86 \u0026plusmn; 2.89 respectively, with more than half of respondents needing to work reduced hours. There were 88.7% of endometriosis respondents and 94.6% of CPP respondents that reported being unable to attend work, or carry our daily activities, due to period pain for at least one of their last three periods. Across both groups there was a proportion unable to work over the last 12 months because of pelvic pain symptoms (7.8% of endometriosis respondents and 15.3% CPP respondents) and further to this, 12.9% of endometriosis respondents and 7.8% of CPP respondents lost their jobs due to their symptoms. The majority of respondents in both groups reported effect on their employment with over 70% having either lost their jobs, changed their jobs or reduced their working hours due to symptoms.\u003c/p\u003e\n \u003cp\u003eIn both groups, around two thirds of respondents reported that pelvic pain had caused significant problems with their partner, whilst over half of respondents reported it had affected their friendships. Two thirds of respondents in both groups experienced pelvic pain during sex, or within 24 hours of sex, over the last 3 months. Most respondents indicated that pelvic pain had previously caused them to interrupt and avoid sex. More than half of respondents reported that social activities with families were affected \u0026lsquo;moderately\u0026rsquo; (27.9% endometriosis respondents and 28% CPP respondents), \u0026lsquo;quite a bit\u0026rsquo; (25.6% endometriosis respondents and 28% CPP respondents), and \u0026lsquo;extremely\u0026rsquo; (10.5% endometriosis respondents and 16.6% CPP respondents).\u003c/p\u003e\n \u003c/div\u003e\n \u003c/div\u003e\n\u003c/div\u003e"},{"header":"Discussion:","content":"\u003cp\u003eOur 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 population\u003csup\u003e\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u003c/sup\u003e. This supports other research that fatigue should be considered a characteristic symptom related to endometriosis and other forms of CPP \u003csup\u003e\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u003c/sup\u003e. 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 \u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eInterestingly, 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 \u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e,\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u003c/sup\u003e. 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 invalidated\u003csup\u003e\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e\u003c/sup\u003e. 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.\u003c/p\u003e \u003cp\u003eOur study has provided new data demonstrating diagnostic delay of endometriosis in Aotearoa New Zealand. Similarly to the previous Australian study\u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e, 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 WES\u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e,\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e,\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e\u003c/sup\u003e 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 \u003cem\u003eEndometriosis New Zealand\u003c/em\u003e 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 \u003cem\u003eme\u003c/em\u003e\u0026reg; 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 people\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e. Such programs may play a vital role in encouraging conversations with health professionals with respect to menstrual symptoms\u003csup\u003e\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eDespite 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\u0026rsquo; lives. In Aotearoa New Zealand, there are numerous barriers to accessing healthcare \u003csup\u003e\u003cspan additionalcitationids=\"CR32 CR33\" citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e\u003c/sup\u003e which may have had an impact on individuals\u0026rsquo; ability to navigate the health system to diagnose and manage their CPP or endometriosis. These include practitioner bias, logistical, and financial barriers \u003csup\u003e\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e\u003c/sup\u003e, as well as significant inequities, with ethnic minorities experiencing poorer health outcomes \u003csup\u003e\u003cspan additionalcitationids=\"CR36\" citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e\u003c/sup\u003e. For CPP sufferers, the current healthcare model is inadequate, highlighting a specific area of unmet patient need \u003csup\u003e\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e\u003c/sup\u003e. 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 \u003csup\u003e\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e,\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e\u003c/sup\u003e. Lack of clinician expertise in gynaecology and missed diagnosis of symptoms may also contribute to diagnostic delay \u003csup\u003e\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e,\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eMāori 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 \u003csup\u003e\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e\u003c/sup\u003e. This provides opportunity for further analysis as it is known that Māori engagement with health services is limited for various historical and contemporary reasons \u003csup\u003e\u003cspan additionalcitationids=\"CR44 CR45\" citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e\u003c/sup\u003e. Although the health-seeking behaviour of Māori is recognised to lead to diagnostic delay for other women\u0026rsquo;s health issues \u003csup\u003e\u003cspan additionalcitationids=\"CR48\" citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e\u003c/sup\u003e, 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) \u003csup\u003e\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e\u003c/sup\u003e. The research team aims to present a sub analysis of data in the context of ethnicity in a later publication.\u003c/p\u003e \u003cp\u003eIt is recognised amongst professionals working within this area of health that there is need for a women\u0026rsquo;s health strategy on the basis of human rights, gender equality and health equity\u003csup\u003e\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e\u003c/sup\u003e. 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 \u003csup\u003e\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e\u003c/sup\u003e. 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.\u003c/p\u003e \u003cp\u003eNational 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, \u003csup\u003e\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e\u003c/sup\u003e and more recently \u0026ldquo;Endometriosis Clinical Practice Guideline\u0026rdquo; authored by the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG)\u003csup\u003e\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e\u003c/sup\u003e. 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 \u003csup\u003e\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e\u003c/sup\u003e. 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 \u003csup\u003e\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and weaknesses of the study\u003c/h2\u003e \u003cp\u003eThe 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 \u003csup\u003e\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e, 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. \u003csup\u003e\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e\u003c/sup\u003e Given the smaller population size in Aotearoa New Zealand, this higher response than previous studies using the WERF EndoCost tool \u003csup\u003e\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e 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 \u003csup\u003e\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e\u003c/sup\u003e. 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.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion:","content":"\u003cp\u003eThose living with endometriosis and CPP in Aotearoa New Zealand experience a high prevalence of symptoms with a profound impact on many aspects of their lives, regardless of whether there was a formal diagnosis of endometriosis or not. Despite substantial improvements over time, there remains a significant diagnostic delay from symptom onset to formal diagnosis of endometriosis. There is an urgent need for targeted resourcing in Aotearoa New Zealand to improve the diagnosis and management of CPP, including education and research programmes.\u003c/p\u003e"},{"header":"Declarations","content":"\u003ch2\u003e\u003cu\u003eData Availability:\u0026nbsp;\u003c/u\u003e\u003c/h2\u003e\n\u003cp\u003eThe analysis of data relating to the results above are available from the corresponding authors upon reasonable request. \u0026nbsp;\u003c/p\u003e\n\u003ch2\u003e\u003cu\u003eAcknowledgements:\u0026nbsp;\u003c/u\u003e\u003c/h2\u003e\n\u003cp\u003eThe research team would like to acknowledge respondents who provided invaluable insight into the data gathered, and specifically to those involved in promotion and recruitment of respondents within the survey. \u0026nbsp;\u003c/p\u003e\n\u003ch2\u003e\u003cu\u003eCompeting Interests:\u0026nbsp;\u003c/u\u003e\u003c/h2\u003e\n\u003cp\u003eDB owns the IP of the me\u0026reg; programme on a no royalty of license fee basis. \u0026nbsp;NJ is past president of the World Endometriosis Society and reports personal fees from Abbott, Guerbet, Myovant Sciences, Vifor Pharma and Roche Diagnostics outside the submitted work. Other authors declare no competing interests.\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003e\u003cu\u003eAuthor Contributions:\u003c/u\u003e\u003c/h2\u003e\n\u003cp\u003eAll authors contributed significantly to this work. JTS, MA and AS designed the study using the WERF EndoCost tool and learnings taken from the previous Australian survey\u0026nbsp;\u003csup\u003e11,29\u003c/sup\u003e. JTS, MA, AS and DB designed the recruitment strategy for an Aotearoa New Zealand context and initially promoted the research material, however further recruitment efforts were assisted by all members of the research team. AA developed the online survey and managed the online survey and data collection process. AE performed the statistical analysis. Clinical oversight and application at all stages of the research were performed by ME, NJ, JM, JG and MA. JTS and MA contributed widely to manuscript writing and critical recommended revisions. All authors reviewed and contributed to the manuscript and approved final draft for submission. \u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eHoward, F., Perry, P., Carter, J., El-Minawi, A. \u0026amp; Li, R.-Z. \u003cem\u003ePelvic Pain: Diagnosis and Management\u003c/em\u003e. (Lippincott Williams and Wilkins, 2000).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLatthe, P., Latthe, M., Say, L., G\u0026uuml;lmezoglu, M. \u0026amp; Khan, K. S. WHO systematic review of prevalence of chronic pelvic pain: a neglected reproductive health morbidity. \u003cem\u003eBMC Public Health\u003c/em\u003e \u003cb\u003e6\u003c/b\u003e, 177 (2006).\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAhangari, A. 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Reprod.\u003c/em\u003e \u003cb\u003e30\u003c/b\u003e, 1331\u0026ndash;1341 (2015).\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"scientific-reports","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"scirep","sideBox":"Learn more about [Scientific Reports](http://www.nature.com/srep/)","snPcode":"","submissionUrl":"","title":"Scientific Reports","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Scientific Reports","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"","lastPublishedDoi":"10.21203/rs.3.rs-1247875/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-1247875/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eChronic pelvic pain (CPP) causes important negative effects on quality of life. Endometriosis is the most common cause of CPP in females, and diagnostic delay is over six years internationally. Data remain scarce for CPP impact or diagnostic delay in Aotearoa New Zealand. This study used an online survey to explore the impact of CPP on various life domains for those aged over 18. Additionally, for those with an endometriosis diagnosis, diagnostic delay and factors affecting this over time were explored. There were 800 respondent (620 with self-reported endometriosis). CPP symptoms, irrespective of final diagnosis, started prior to age 20 and negatively impacted multiple life domains including employment, education, and relationships. Mean diagnostic delay for those with endometriosis was 8.7 years, including 2.9 years between symptom onset and first presentation and 5.8 years between first presentation and diagnosis. Five doctors on average were seen prior to diagnosis. However, there was a reduction in the interval between first presentation and diagnosis over time, from 8.4 years for those presenting before 2005, to two years for those presenting after 2012. While diagnostic delay is decreasing, CPP, irrespective of aetiology, continues to have a significant negative impact on the lives of those affected.\u003c/p\u003e","manuscriptTitle":"EndoCost Aotearoa New Zealand: a Cross-sectional Survey of Chronic Pelvic Pain and Endometriosis","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2022-01-17 15:45:34","doi":"10.21203/rs.3.rs-1247875/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Major revision","date":"2022-02-14T16:16:55+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2022-02-02T12:58:22+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"a4c44c18-1266-426d-945b-271bb7121090","date":"2022-01-27T18:31:42+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"625e8aad-d41c-4fa8-980b-52090d0ca9b3","date":"2022-01-21T21:29:30+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2022-01-20T13:53:08+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2022-01-20T13:44:37+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2022-01-17T04:47:08+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2022-01-14T12:59:08+00:00","index":"","fulltext":""},{"type":"submitted","content":"Scientific Reports","date":"2022-01-10T22:30:58+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"scientific-reports","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"scirep","sideBox":"Learn more about [Scientific Reports](http://www.nature.com/srep/)","snPcode":"","submissionUrl":"","title":"Scientific Reports","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Scientific Reports","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"7b4b62f7-13e8-4ca4-802a-375b71da8f82","owner":[],"postedDate":"January 17th, 2022","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2022-03-08T03:44:09+00:00","versionOfRecord":[],"versionCreatedAt":"2022-01-17 15:45:34","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-1247875","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-1247875","identity":"rs-1247875","version":["v1"]},"buildId":"WvIrzKhiLBfengagbw6Ux","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}