{"paper_id":"e028f3d7-7843-4f18-bfe9-42536f2bb373","body_text":"1\nVol.:(0123456789)Scientific Reports |         (2022) 12:4425  | https://doi.org/10.1038/s41598-022-08464-x\nwww.nature.com/scientificreports\nAn Aotearoa New Zealand survey \nof the impact and diagnostic delay \nfor endometriosis and chronic \npelvic pain\nJordan Tewhaiti‑Smith1,2*, Alex Semprini1,10, Deborah Bush3, Augustus Anderson1, \nAllie Eathorne1, Neil Johnson4,5, Jane Girling6, Michael East7, Joy Marriott8 & \nMike Armour1,9,11\nChronic pelvic pain (CPP) causes important negative effects on quality of life. Endometriosis is \nthe most common cause of CPP in females, and diagnostic delay is over six years internationally. \nData remain scarce for CPP impact or diagnostic delay in Aotearoa New Zealand. This study used \nan online survey to explore the impact of CPP on various life domains for those aged over 18. \nAdditionally, for those with an endometriosis diagnosis, diagnostic delay and factors affecting this \nover time were explored. There were 800 respondent (620 with self‑reported endometriosis). CPP \nsymptoms, irrespective of final diagnosis, started prior to age 20 and negatively impacted multiple \nlife domains including employment, education, and relationships. Mean diagnostic delay for those \nwith endometriosis was 8.7 years, including 2.9 years between symptom onset and first presentation \nand 5.8 years between first presentation and diagnosis. Five doctors on average were seen prior to \ndiagnosis. However, there was a reduction in the interval between first presentation and diagnosis \nover time, from 8.4 years for those presenting before 2005, to two years for those presenting after \n2012. While diagnostic delay is decreasing, CPP , irrespective of aetiology, continues to have a \nsignificant negative impact on the lives of those affected.\nChronic pelvic pain (CPP) is defined as pain in the pelvis, which may be intermittent, of greater than six months \nduration, which is severe enough to cause functional disability or require medical  intervention1. CPP affects a \nsignificant proportion of reproductive-aged females, with worldwide estimates of up to 24–26%2,3. Endometrio-\nsis, which is the presence of tissue similar to the endometrium (lining of the uterus) outside the  uterus4, is the \nmost common cause of  CPP5, accounting for 24–40% of CPP  diagnoses6,7. Internationally, prevalence estimates \nof endometriosis are between 5% 8 and 11%9 of reproductive-aged females. Worldwide data demonstrate that \nendometriosis and CPP has a negative impact on all aspects of an individual’s  life10–15. This negative impact is fur-\nther compounded by significant diagnostic delay, with reported averages ranging from 6.4 to 13  years11,13,14,16,17. \nDiagnostic delay is known to contribute to decreased quality of life and literature has described that endome -\ntriosis carries significant economic burden related not only to direct healthcare costs, but to costs from loss of \nproductivity, highlighting the importance of defining population level diagnostic delay for this  condition18,19.\nThere is a paucity of prevalence data for CPP and endometriosis in Aotearoa New Zealand; however, older \nprevalence studies have reported a quarter of females in Aotearoa New Zealand experience some pelvic  pain15. \nFurthermore, 27% of school students from Aotearoa New Zealand report they sometimes or always miss school \nOPEN\n1Wellington Hospital, Medical Research Institute of New Zealand, Wellington 6021, New Zealand. 2Canterbury \nDistrict Health Board, Christchurch, New Zealand. 3Endometriosis New Zealand, PO Box 1673, Christchurch 8140, \nNew Zealand. 4Robinson Research Institute, University of Adelaide, Adelaide, South Australia. 5Auckland \nGynaecology Group and Repromed, 105 Remuera Road, Auckland, New Zealand. 6Department of Anatomy, \nSchool of Biomedical Sciences, University of Otago, Dunedin 9016, New Zealand. 7Oxford Women’s Health, Forte \nHospital, 132 Peterborough Street, Christchurch, New Zealand. 8Department of Obstetrics and Gynaecology, \nUniversity of Auckland, Private Bag 92019, Auckland, New Zealand. 9NICM Health Research Institute, Western \nSydney University, Penrith, NSW 2751, Australia. 10Victoria University of Wellington, Wellington, New \nZealand. 11Translational Health Research Institute (THRI), Western Sydney University, Penrith, NSW 2751, \nAustralia. *email: Jordan.tewhaiti-smith@mrinz.ac.nz\n\n2\nVol:.(1234567890)Scientific Reports |         (2022) 12:4425  | https://doi.org/10.1038/s41598-022-08464-x\nwww.nature.com/scientificreports/\ndue to menstruation and symptoms related to  this20, which aligns with similar research conducted in  Australia21. \nGiven the high prevalence of pelvic pain, understanding the factors contributing to diagnostic delay and symptom \npresentation in Aotearoa New Zealand is crucial to ameliorate the negative impact of CPP on individuals’ quality \nof life, and furthermore fits within the international agenda for endometriosis  research22.\nBoth diagnostic delay and the impact of CPP are likely to vary between countries based on cultural factors, \nhealth literacy and access to affordable medical  care11. Whilst Australian and worldwide data are useful, current \ndata on the impact of pelvic pain in Aotearoa New Zealand is urgently needed to better understand areas of \nunmet patient need. It is anticipated this will provide information to inform national health strategies, similar \nto the ‘National Action Plan for Endometriosis’ that has been enacted in  Australia23.\nThe aim of this cross-sectional national survey is to assess the impact of CPP on social, sexual, occupational, \nfinancial, and educational aspects of overall quality of life, within an Aotearoa New Zealand cohort of individuals \nwith self-reported CPP , with or without a formal endometriosis diagnosis. Additionally, for individuals with a \ndiagnosis of endometriosis, diagnostic delay and factors contributing to this delay are explored.\nMethods\nEthics and consent. The Health and Disability Ethics Committee of New Zealand was consulted and pro-\nvided confirmation that this survey was out-of-scope for full ethical review. Although not required from an \nethics perspective, informed consent was explicitly obtained from respondents before the start of the survey, as \nbest practice when collating personal medical information. Participation was fully anonymised, and respondents \ncould withdraw at any stage before survey submission; however, respondents could not withdraw after submis-\nsion as no identifying information was collected. All methods described below were performed in accordance \nwith relevant best practice guidelines with oversight from MRINZ and the research team and complies with \npublication policies set out by Scientific Reports.\nOnline survey. This study utilised the World Endometriosis Research Foundation (WERF) EndoCost  tool24. \nThe original WERF protocol consisted of validated prospective hospital questionnaires with both retrospective \nand prospective patient  questionnaires24. Our study used the 99 item retrospective patient questionnaire com-\nponent of the EndoCost tool, modified to an Aotearoa New Zealand demographic and healthcare context, and \ndelivered using a REDCap data collection  survey25. For example, local brand names for pharmaceuticals were \nused and questions were worded to ensure wide demographic and equitable patient inclusivity. Basic demo-\ngraphic data, including ethnicity data, were collated. This paper reports the survey data regarding diagnosis, \neducation, work, social wellbeing, and recent prevalence (< 3 months) of other pelvic pain symptoms such as \ndysmenorrhea and dyspareunia. Survey data on the economic analysis and cost of illness burden will be pub-\nlished separately.\nRecruitment. The main method of recruitment was dissemination using social media platforms (Facebook, \nInstagram and Twitter), driven by the authors and their organisational affiliations, with targeted dissemination \nto Māori through the first author’s (JTS) academic and social networks. Social media posts were encouraged to \nbe shared and made ‘public’ online. As recruitment aimed to be as inclusive as possible, dissemination through \npaper recruitment flyers containing the digital survey link was carried out at various private and public hospital \ngynaecology clinics; three private clinics in Auckland (Auckland Gynaecology Group, Endometriosis Ascot and \nShore Women), Christchurch Public Hospital, and two private Christchurch hospital clinics (Oxford Women’s \nHealth, St Georges Hospital). An online participant information sheet was presented before participants started \nthe online survey, highlighting that the survey completion time was expected to take under 60 min. The survey \nwas open for 10 weeks from March 2021 to May 2021.\nStudy population. Respondents were eligible to participate if they were aged 18 and over, currently liv-\ning in Aotearoa New Zealand and affected by CPP (defined as pain in the lower abdomen lasting for at least \n6 months that was severe enough to limit function for activities of daily life or require medical intervention), \nwith at least one of the following symptoms: dysmenorrhea, dyspareunia or dyschezia. This survey was designed \nto measure prevalence of symptoms and assess their impact rather than test a hypothesis, therefore no sample \nsize calculation was performed. As previously mentioned, local prevalence estimates for individuals with CPP \nand endometriosis remain scarce, however literature has suggested that the three-month prevalence rate may \nextend to around a quarter of the total female Aotearoa New Zealand  population15, of which remains at an esti-\nmated 2.5 million  residents26.\nAnalyses. Statistical analysis was undertaken by the Medical Research Institute of New Zealand (MRINZ) \nusing SAS version 9.4. Data descriptions were reported by mean and standard deviation, or medians and inter-\nquartile ranges. Categorical values were described by counts and proportions expressed as percentages. For data \nneeding comparison between groups, t-tests, chi-square tests or Fisher’s exact were used.\nThe impact of publication of major endometriosis diagnostic guidelines on diagnostic delay was explored a \npriori, in keeping with previous studies in  Australia11 . The Society of Human Reproduction and Embryology \n(ESHRE) diagnostic guidelines were published in  200527; both the World Endometriosis Society (WES) diagnostic \n guidelines10 and updated  ESHRE28 guidelines were published in 2013. Therefore, analyses for diagnostic delay \nused three groups: presentation to doctor before 2005, presentation between 2005 and 2012, and presentation \nafter 2012. For each group, Pearson’s and Spearman’s rank correlations were used to estimate the correlation \nbetween first presentation to a doctor, number of years to diagnosis, number of doctors consulted until diagnosis, \nthe year when symptoms started and delay in accessing medical care.\n\n3\nVol.:(0123456789)Scientific Reports |         (2022) 12:4425  | https://doi.org/10.1038/s41598-022-08464-x\nwww.nature.com/scientificreports/\nResults\nDemographic data. There was a total of 800 surveys completed. Amongst these, 620 respondents self-\nreported a laparoscopic diagnosis of endometriosis whilst 180 respondents reported CPP , either from another \ndiagnosis (e.g. painful bladder syndrome, vulvodynia) or without a formal diagnosis of endometriosis. Demo-\ngraphic data are reported in Table 1. The majority of respondents were European, followed thereafter by Māori, \nAsian, Pacific, and Middle Eastern, Latin American and African (MELAA), respectively. The majority of \nrespondents had no children. Most respondents reported university level education, closely followed by post-\ngraduate studies, post-secondary studies (not in university) and then upper secondary school. Personal income \ndata showed that most respondents were in the income bracket “$501 to $1500 (New Zealand dollars) per week” .\nDiagnostic delay:. The data related to diagnostic delay are reported in Table  2. The mean time between \nsymptom onset and first presentation to a doctor was 2.9 ± 4.0 years for respondents with endometriosis and \n2.4 ± 3.6 years for respondents with CPP . In those with a diagnosis of endometriosis, the mean time between the \nfirst presentation to a doctor and diagnosis was 5.8 ± 5.7 years. The mean number of doctors seen prior to their \nformal diagnosis of endometriosis was 4.8 ± 3.8 .\nWith respect to the impact of diagnostic endometriosis guidelines, before 2005 the mean delay from presen-\ntation to diagnosis was 8.4  ± 7.0 years, from 2005 to 2012 was 5.3  ± 4.0 years and after 2012 was 2.0  ± 1.9 years. \nThere was also a weak negative correlation between the year of the first doctor’s visit and the number of doctors \nconsulted until diagnosis of endometriosis (r = -0.18 and p =  < 0.0001). There was a moderate negative correlation \nTable 1.  Demographic data. a Respondents were able to select more than one option.\nVariable\nEndometriosis\nMean (SD)\nCPP\nMean (SD)\nAge (Range from 18 to 74) 31.8 (8.0)\nN = 620\n30.0 (8.0)\nN = 180\nN/620 (%) N/180 (%)\nOccupationa\nEmployee 443 (71.5) 115 (63.9)\nSelf-employed 64 (10.3) 20 (11.1)\nHome duties/caring for children or family 66 (10.6) 20 (11.1)\nIn education 92 (14.8) 44 (24.4)\nDoing voluntary work 21 (3.4) 10 (5.6)\nUnable to work because of CPP symptoms 54 (8.7) 23 (12.8)\nUnable to work for other reasons 19 (3.1) 11 (6.1)\nOther 11 (1.8) 6 (3.3)\nEthnicitya\nEuropean 513 (82.7) 141 (78.3)\nMāori 75 (12.1) 29 (16.1)\nPacific 9 (1.5) 5 (2.8)\nAsian 17 (2.7) 4 (2.2)\nMELAA 6 (1) 1 (0.6)\nParity\nNulliparous 456 (73.5) 131 (72.8)\nParous 164 (26.5) 49 (27.2)\nHighest level of education\nPrimary school 4 (0.6) 1 (0.6)\nLower secondary (Y ear 10) 10 (1.6) 5 (2.8)\nUpper secondary (Y ear 12) 86 (13.9) 22 (12.2)\nPost-secondary, not university 127 (20.5) 41 (22.8)\nUniversity 240 (38.7) 70 (38.9)\nPostgraduate 143 (23.1) 35 (19.4)\nPrefer not to answer 10 (1.6) 6 (3.3)\nPersonal income level\n < $500 per week 173 (27.9) 68 (37.8)\n$501 to $1500 per week 295 (47.6) 74 (41.1)\n$1501 to $3000 per week 101 (16.3) 22 (12.2)\n$3001 to $4500 per week 7 (1.1) 4 (2.2)\n > $4500 per week 6 (1) 0 (0)\nPrefer not to answer 38 (6.1) 12 (6.7)\n\n4\nVol:.(1234567890)Scientific Reports |         (2022) 12:4425  | https://doi.org/10.1038/s41598-022-08464-x\nwww.nature.com/scientificreports/\nbetween the year of the first presentation to a doctor for those with a diagnosis of endometriosis (r = − 0.60, \np =  < 0.0001), and a weak to moderate negative correlation for those with CPP (r = − 0.32, p =  < 0.0001), suggest-\ning less delay for both groups in seeking medical attention over time.\nPelvic pain symptoms. The data relating to symptoms are presented in Table  2. The mean age of symp-\ntom onset was under 20 years in both groups. Most respondents within the endometriosis group reported their \nendometriosis was stage III or stage IV (30.2% and 27.3%, respectively) at their most recent laparoscopy. Severe \ndysmenorrhoea (period pain) was the most common pelvic pain symptom and was similar between groups \n(88.7% of endometriosis respondents and 87.2% of CPP respondents). The majority of respondents had expe-\nrienced pelvic pain with periods within the last three months (83.5% of endometriosis respondents and 92.2% \nof CPP respondents) and reported the need for either over the counter or prescribed pain medications. Most \nrespondents reported the frequency of their pelvic pain as occurring with every period (83.6 of endometriosis \nrespondents and 89.1% of CPP respondents) or with 2 out of 3 periods (10.5% and 7.9% respectively).\nImpact of pelvic pain. The data relating to the impact of pelvic pain for respondents are presented in Table  3, \nshowing significant effects on all social domains assessed in this online survey. These included an impact on \neducation, work, as well as sexual and other personal relationships.\nThe mean days of studying lost per month by endometriosis and CPP respondents was 5.8 ± 5.2 and 5.7 ± 4.3 \nrespectively, with almost half of respondents reporting delayed exams or postponed assignments and a propor-\ntion of respondents giving up studying completely (23.9% of endometriosis respondents and 22.4% of CPP \nrespondents).\nThe mean days taken off work per month for endometriosis and CPP respondents were 3.1 ± 3.4 and 2.9 ± 2.9 \nrespectively, with more than half of respondents needing to work reduced hours. There were 88.7% of endo-\nmetriosis respondents and 94.6% of CPP respondents that reported being unable to attend work, or carry our \ndaily activities, due to period pain for at least one of their last three periods. Across both groups there was a \nproportion unable to work over the last 12 months because of pelvic pain symptoms (7.8% of endometriosis \nrespondents and 15.3% CPP respondents) and further to this, 12.9% of endometriosis respondents and 7.8% of \nCPP respondents lost their jobs due to their symptoms. The majority of respondents in both groups reported \neffect on their employment with over 70% having either lost their jobs, changed their jobs or reduced their \nworking hours due to symptoms.\nTable 2.  Diagnostic delay and pelvic pain symptoms. a Respondents were able to select more than one option. \nb Respondents were not required to answer all question fields in the survey.\nVariable\nEndometriosis\nMean (SD)\nCPP\nMean (SD)\nAge when symptoms first  startedb 16.9 (6.1)\nN = 613\n18.7 (6.8)\nN = 178\nTime between symptom onset and 1st doctors visit (years)b 2.9 (4.04)\nN = 604\n2.4 (3.6)\nN = 176\nTime between 1st doctors visit and diagnosis of endometriosis (years)b 5.8 (5.7)\nN = 615 NA\nNumber of doctors seen before diagnosis of endometriosis b 4.8 (3.77)\nN = 613 NA\nPelvic pain symptoms at onset of symptomsa N/620 (%) N/180 (%)\nSevere dysmenorrhoea 550 (88.7) 157 (87.2)\nNon-cyclical pelvic pain 399 (64.4) 128 (71.1)\nOvulation pain 286 (46.1) 87 (48.3)\nChronic fatigue 287 (46.3) 82 (45.6)\nCyclical/peri-menstrual symptoms 248 (40) 74 (41.1)\nDeep dyspareunia 173 (27.9) 52 (28.9)\nSubfertility 45 (7.3) 10 (5.6)\nN/617 (%) N/180 (%)\nPelvic pain with periods in the last 3  monthsb 515 (83.5) 166 (92.2)\nPelvic pain frequencyb N/513 (%) N/165 (%)\nOccasionally (with 1 of my last 3 periods) 30 (5.8) 5 (3)\nOften (with 2 in 3 of my last 3 periods) 54 (10.5) 13 (7.9)\nAlways (with all of my last 3 periods) 429 (83.6) 147 (89.1)\nN/515 (%) N/166 (%)\nTaken prescribed  painkillersb 393 (76.3) 128 (77.1)\nN/513 (%) N/166 (%)\nTaken over the counter painkillers 426 (83) 128 (77.1)\n\n5\nVol.:(0123456789)Scientific Reports |         (2022) 12:4425  | https://doi.org/10.1038/s41598-022-08464-x\nwww.nature.com/scientificreports/\nIn both groups, around two thirds of respondents reported that pelvic pain had caused significant problems \nwith their partner, whilst over half of respondents reported it had affected their friendships. Two thirds of \nrespondents in both groups experienced pelvic pain during sex, or within 24 h of sex, over the last 3 months. \nMost respondents indicated that pelvic pain had previously caused them to interrupt and avoid sex. More than \nhalf of respondents reported that social activities with families were affected ‘moderately’ (27.9% endometriosis \nTable 3.  Impact of pelvic pain symptoms on daily life. a Respondents were able to select more than one option. \nb Respondents were not required to answer all question fields in the survey.\nVariable Endometriosis CPP\nPeriod pain prevented attending work or carrying out daily activities in the last 3 monthsb N/511 (%) N/166 (%)\nNever 58 (11.4) 9 (5.4)\nOccasionally (in 1 of my last 3 periods) 150 (29.4) 41 (24.7)\nOften (in 2 of my last 3 periods) 136 (26.6) 51 (30.7)\nAlways (in all of my last 3 periods) 167 (32.7) 65 (39.2)\nPelvic pain during sex, or within 24 h, within the last 3 monthsb N/617 (%) N/178 (%)\nNot applicable: I have not had sex in the last 3 months 119 (19.3) 35 (19.7)\nNo 63 (10.2) 13 (7.3)\nYe s 418 (67.7) 122 (68.5)\nI don’t wish to answer these questions 17 (2.8) 8 (4.5)\nFrequency of pelvic pain during sex, or within 24 hb N/416 (%) N/121 (%)\nNever 3 (0.7) 1 (0.8)\nOccasionally (with less than a quarter of my periods) 75 (18) 26 (21.5)\nOften (a quarter to half of the times) 69 (16.6) 17 (14)\nUsually (more than half of the times) 120 (28.8) 34 (28.1)\nAlways (every time) 148 (35.6) 42 (34.7)\nCan’t remember 1 (0.2) 1 (0.8)\nN/420 (%) N/122 (%)\nEver interrupted sex because of pelvic  painb 339 (80.7) 100 (82)\nN/418 (%) N/122 (%)\nEver avoided sex because of pelvic  painb 338 (80.9) 99 (81.1)\nN/476 (%) N/127 (%)\nCPP ever affecting personal relationship  negativelyb 368 (77.3) 95 (74.8)\nHow did it affect relationships?a b N/368 (%) N/95 (%)\nCaused significant problems with partner 245 (66.6) 64 (67.4)\nCreated problems with family 107 (29.1) 30 (31.6)\nCaused a relationship to split 80 (21.7) 12 (12.6)\nMade it difficult to look after children 76 (20.7) 29 (30.5)\nAffected friendships 218 (59.2) 53 (55.8)\nN/477 (%) N/127 (%)\nLost time to education due to chronic pelvic  painb 318 (66.7) 85 (66.9)\nEffect on educationa b N/318 (%) N/85 (%)\nGave up studies 76 (23.9) 19 (22.4)\nChanged studies 35 (11) 6 (7.1)\nDelayed exams or postponed assignments 169 (53.1) 45 (52.9)\nOther 87 (27.4) 30 (35.3)\nChronic pelvic pain affecting jobb N/474 (%) N/124 (%)\nYe s 363 (76.6) 90 (72.6)\nNo 74 (15.6) 15 (12.1)\nN/A—not employed in the last 12 months 37 (7.8) 19 (15.3)\nHow did it affect work?b N/363 (%) N/90 (%)\nLost job 47 (12.9) 7 (7.8)\nChanged job 41 (11.3) 8 (8.9)\nReduced work hours 191 (52.6) 49 (54.4)\nOther 161 (44.4) 39 (43.3)\nN/473 (%) N/121 (%)\nScared to tell their employer about CPP because of fear that it might affect your  prospectsb 345 (72.9) 87 (71.9)\n\n6\nVol:.(1234567890)Scientific Reports |         (2022) 12:4425  | https://doi.org/10.1038/s41598-022-08464-x\nwww.nature.com/scientificreports/\nrespondents and 28% CPP respondents), ‘quite a bit’ (25.6% endometriosis respondents and 28% CPP respond-\nents), and ‘extremely’ (10.5% endometriosis respondents and 16.6% CPP respondents).\nDiscussion\nOur study found that females with CPP , irrespective of diagnosis or lack thereof, reported a high prevalence of \npelvic pain symptoms, with a profoundly negative impact on quality of life and an early onset of symptoms (under \n20 years of age). All clinical symptoms of pelvic pain were commonly reported, with dysmenorrhoea being the \nmost common. Chronic fatigue was one of the most prevalent non-gynaecological symptoms, reported by more \nthan 45% of respondents, significantly greater than the prevalence in the general population, published at around \n2.83% of women  worldwide29. This supports other research that fatigue should be considered a characteristic \nsymptom related to endometriosis and other forms of CPP , which in practice may be  overlooked30. The impact \nof pelvic pain symptoms on education, work, and relationships for this large cohort of respondents, highlights \nthe significant burden for individuals, their whānau (family) and wider society, given that an estimated quarter \nof the female population of Aotearoa New Zealand suffers CPP to some  degree15. It should be acknowledged that \nour study did not utilise validated instruments for the measurement of impact, however utilised the EndoCost \ntool as mentioned in our methods. This tool allows direct comparison with data sets from other global EndoCost \nstudies, most recently Australia.\nInterestingly, results from our study have found that CPP symptoms are similar when looking at the impact \nof symptoms on individuals, regardless of the aetiology of the pain. This finding that the symptoms rather than \nthe underlying cause of these symptoms, is a crucial factor in the negative impact observed and is consistent \nwith international  evidence 11,31. In Australia, there is some evidence to suggest that the focus of healthcare \nprovision has been for those formally diagnosed with endometriosis, while experiences of women with CPP \nwithout a diagnosis of endometriosis are often  invalidated32. Given the clear negative impact on quality of life \nfor all respondents included in this study, it is important that healthcare and support are provided for all causes \nof CPP in Aotearoa New Zealand, rather than focussing on endometriosis alone.\nOur study has provided new data demonstrating diagnostic delay of endometriosis in Aotearoa New Zealand. \nSimilarly to the previous Australian  study11, we found the overall diagnostic delay was approximately eight years, \nwith components of diagnostic delay for endometriosis, time to presentation to a health professional and time \nfrom presentation to diagnosis, decreasing over time. It is likely that the publication of diagnostic guidelines \nfrom ESHRE and  WES11,19,27 have contributed to the reduction in time between presentation and diagnosis, and \nthe number of doctors seen before a diagnosis. The reduction in delay between symptom onset and presenta-\ntion is likely due to an increasing public awareness over time of endometriosis and other forms of secondary \ndysmenorrhea or CPP . This increase in consumer and practitioner awareness of endometriosis and CPP , has \nbeen driven by advocacy groups, such as Endometriosis New Zealand and high-profile coverage in the national \nmedia. Although there is no formal compulsory educational curriculum that focuses on CPP in Aotearoa New \nZealand, the Menstrual Health and Endometriosis or me ® secondary schools education programme has shown \nsignificant improvement of menstrual health literacy leading to awareness and earlier presentation to health \nservices to address symptoms in young  people20. Such programs may play a vital role in encouraging conversa-\ntions with health professionals with respect to menstrual  symptoms33.\nDespite reduced diagnostic delay over time, the mean time to diagnosis is still lengthy at over two years, dur-\ning which time there is demonstrable negative impact across all domains of respondents’ lives. In Aotearoa New \nZealand, there are numerous barriers to accessing  healthcare34–37 which may have had an impact on individuals’ \nability to navigate the health system to diagnose and manage their CPP or endometriosis. These include practi-\ntioner bias, logistical, and financial  barriers36, as well as significant inequities, with ethnic minorities experienc-\ning poorer health  outcomes38–40. For CPP sufferers, the current healthcare model is inadequate, highlighting a \nspecific area of unmet patient  need41. Furthermore, an extensive body of international literature shows that the \nculture of normalising CPP may contribute to diagnostic delay, and this normalisation effect may occur both \ninformally and formally when patients are seen by a  doctor42,43. Lack of clinician expertise in gynaecology and \nmissed diagnosis of symptoms may also contribute to diagnostic  delay17,44.\nIt is recognised amongst professionals working within this area of health that there is need for a women’s \nhealth strategy on the basis of human rights, gender equality and health  equity45. Furthermore, this call to action \nhas been signalled globally to improve awareness, fill knowledge gaps, and create effective policy and interven-\ntions for the betterment of  society46. In Aotearoa New Zealand, there are currently systematic changes being \nmade to promote equity and efficiency within the public health sector, which are hoped will address CPP and \nendometriosis outcomes.\nNational guidelines to promote consistency of care and improve clinical outcomes for those with confirmed \nor suspected endometriosis have been published by the New Zealand Ministry of  Health47, and more recently \n“Endometriosis Clinical Practice Guideline” authored by the Royal Australian and New Zealand College of \nObstetricians and Gynaecologists (RANZCOG) 48. Although RANZCOG is a joint College, this RANZCOG \nclinical guideline is anticipated to be widely adopted in Aotearoa New Zealand; however, some financial barriers \nto implementation will need to be overcome. Real time resources and variability of service provision within the \ncountry should be fully considered, as previous guiding documents have not done  so47. There is also a shortfall \nin the national monitoring of disease for individuals with CPP and endometriosis, with the most recent Ministry \nof Health led national general health survey lacking a specific focus on these  conditions49.\nIt is also important to note within the context of these recent guideline changes that the calculation of diag-\nnostic delay for endometriosis may be affected, given a focus on diagnosing endometriosis clinically prior to \nsurgical diagnosis. The data should be considered difficult to fully interpret given this bias. It is however known \nwithin clinical practice that a surgical diagnosis and excision or treatment of endometriosis does not correlate to \n\n7\nVol.:(0123456789)Scientific Reports |         (2022) 12:4425  | https://doi.org/10.1038/s41598-022-08464-x\nwww.nature.com/scientificreports/\na reduction in CPP complaints, and the presence of endometriosis surgically does not correlate to being causa-\ntive of CPP . This highlights again the importance of shifting the focus to CPP as a whole, rather than focussing \nsolely on endometriosis guidelines for the treatment of CPP . Diagnostic delay is a good indicator of how the \nhealth system is tracking for meeting health need, but ongoing prevalence and impact data for CPP should also \nprovide a basis for meaningful change.\nStrengths and weaknesses of the study. The main strength of this study is that it provides data on \nimpact of symptoms for individuals with CPP and endometriosis in Aotearoa New Zealand, where existing lit-\nerature is limited. Given this lack of literature, it is difficult to ascertain whether this data is representative of the \nwhole Aotearoa New Zealand population suffering with CPP and endometriosis. This study utilised the WERF \nEndoCost tool to allow direct comparison with other data sets  globally24, including our Australian counterparts, \nwith whom we share organisations with influence across the Trans-Tasman region, such as RANZCOG. The \nsample size of 800 respondents was greater than both previous Australian  studies19. Given the smaller popula-\ntion size in Aotearoa New Zealand, this higher response than previous studies using the WERF EndoCost  tool24 \nvalidates the unmet clinical need and strong motivation of this New Zealand cohort to effect change. In terms of \nstudy weaknesses, additional recruitment may have been possible if the survey was less extensive.\nMāori participation within our study was 12.1% of endometriosis respondents and 16.1% of CPP respondents, \ndemonstrating parity with the total Aotearoa New Zealand population, as Māori make up approximately 16% of \nthe  population50. This provides opportunity for further analysis as it is known that Māori engagement with health \nservices is limited for various historical and contemporary  reasons51–54 and the rate of participation was seen \nas a strength to this study indicating that it provides some reassurance to the representation of the population. \nAlthough the health-seeking behaviour of Māori is recognised to lead to diagnostic delay for other women’s health \n issues55–57, this online survey was able to successfully reach Māori respondents. There was under-representation \nin the survey from respondents who identified as Pacific Island, Asian and MELAA ethnicities when compared \nto the population as a whole (total population parity being 8%, 15% and 1.5% respectively) 50.\nSampling bias may exist given the recruitment process focused upon online social media platforms which \nwere promoted heavily by author affiliated organisations. Furthermore, it is recognised that respondents who \nfollow these organisations on social media may have a propensity to have more severe symptomatology com-\npounding this sampling  bias58. This is an issue that may cause the accuracy of our diagnostic delay data to not \nbe considered reflective of the Aotearoa New Zealand population affected by CPP and endometriosis. It should \nhowever also be considered that those responding may be affected more by improvements to the health system \nbecause of data published, and conversely there may be a proportion of those affected that are left untreated and \nunengaged to the health system whose voices we are missing out on. Given the fragmented district health board \nsystem in Aotearoa New Zealand, if this survey was replicated, geographical data could be collected to report \non whether location of residence and access to health care services per region may have had a significant impact \non results. With these weaknesses in mind, it is clear that further research and strengthening must be ongoing \ndespite the concerning figures presented within this new data.\nConclusion\nThose living with endometriosis and CPP in Aotearoa New Zealand experience a high prevalence of symptoms \nwith a profound impact on many aspects of their lives, regardless of whether there was a formal diagnosis of \nendometriosis or not. Despite substantial improvements over time, there remains a significant diagnostic delay \nfrom symptom onset to formal diagnosis of endometriosis. There is an urgent need for targeted resourcing in \nAotearoa New Zealand to improve the diagnosis and management of CPP , including education and research \nprogrammes.\nData availability\nThe analysis of data relating to the results above are available from the corresponding authors upon reasonable \nrequest.\nReceived: 10 January 2022; Accepted: 8 March 2022\nReferences\n 1. Howard, F ., Perry, P ., Carter, J., El-Minawi, A. & Li, R.-Z. Pelvic pain: diagnosis and management (Lippincott Williams and Wilkins, \nPhiladelphia, 2000).\n 2. Latthe, P ., Latthe, M., Say, L., Gülmezoglu, M. & Khan, K. S. WHO systematic review of prevalence of chronic pelvic pain: a \nneglected reproductive health morbidity. BMC Public Health 6, 177 (2006).\n 3. Ahangari, A. Prevalence of chronic pelvic pain among women: an updated review. Pain Phys. 17, 141–147 (2014).\n 4. Johnson, N. P . et al. World Endometriosis Society consensus on the classification of endometriosis. Hum. Reprod. 32, 315–324 \n(2017).\n 5. Hickey, M., Ballard, K. & Farquhar, C. Endometriosis. BMJ 348, g1752–g1752 (2014).\n 6. Mowers, E. L. et al. Prevalence of endometriosis during abdominal or laparoscopic hysterectomy for chronic pelvic pain. Obstet. \nGynecol. 127, 1045–1053 (2016).\n 7. Whitaker, L. H. R. et al. An exploratory study into objective and reported characteristics of neuropathic pain in women with \nchronic pelvic pain. PLoS ONE 11, e0151950 (2016).\n 8. Vos, T. et al. Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases \nand injuries in 188 countries, 1990–2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet 386, 743–800 \n(2015).\n\n8\nVol:.(1234567890)Scientific Reports |         (2022) 12:4425  | https://doi.org/10.1038/s41598-022-08464-x\nwww.nature.com/scientificreports/\n 9. Rowlands, I. et al. Prevalence and incidence of endometriosis in Australian women: a data linkage cohort study. BJOG An Int. J. \nObstet. Gynaecol. 128, 657–665 (2021).\n 10. Johnson, N. P . et al. Consensus on current management of endometriosis. Hum. Reprod. 28, 1552–1568 (2013).\n 11. Armour, M. et al. Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: an \nAustralian survey. Sci. Rep. 10, 16253 (2020).\n 12. Moradi, M., Parker, M., Sneddon, A., Lopez, V . & Ellwood, D. Impact of endometriosis on women’s lives: a qualitative study. BMC \nWomens. Health 14, 123 (2014).\n 13. Nnoaham, K. E. et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. \nFertil. Steril. 96, 366-373.e8 (2011).\n 14. O’Hara, R., Rowe, H. & Fisher, J. Managing endometriosis: a cross-sectional survey of women in Australia. J. Psychosom. Obstet. \nGynecol. https:// doi. org/ 10. 1080/ 01674 82X. 2020. 18253 74 (2020).\n 15. Grace, V . M. & Zondervan, K. T. Chronic pelvic pain in New Zealand: prevalence, pain severity, diagnoses and use of the health \nservices. Aust. N. Z. J. Public Health 28, 369–375 (2004).\n 16. Han, X. T., Guo, H. Y ., Kong, D. L., Han, J. S. & Zhang, L. F . Analysis of characteristics and influence factors of diagnostic delay of \nendometriosis. Zhonghua Fu Chan Ke Za Zhi 53, 92–98 (2018).\n 17. Hudelist, G. et al. Diagnostic delay for endometriosis in Austria and Germany: causes and possible consequences. Hum. Reprod.  \n27, 3412–3416 (2012).\n 18. Simoens, S. et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. \nHum. Reprod. 27, 1292–1299 (2012).\n 19. Armour, M., Lawson, K., Wood, A., Smith, C. A. & Abbott, J. The cost of illness and economic burden of endometriosis and chronic \npelvic pain in Australia: A national online survey. PLoS ONE 14, e0223316 (2019).\n 20. Bush, D., Brick, E., East, M. C. & Johnson, N. Endometriosis education in schools: A New Zealand model examining the impact of \nan education program in schools on early recognition of symptoms suggesting endometriosis. Aust. New Zeal. J. Obstet. Gynaecol. \n57, 452–457 (2017).\n 21. Armour, M. et al. The prevalence and educational impact of pelvic and menstrual pain in Australia: A National Online Survey of \n4202 Y oung Women Aged 13–25 Y ears. J. Pediatr. Adolesc. Gynecol. 33, 511–518 (2020).\n 22. Rogers, P . A. W . et al. Defining Future directions for endometriosis research. Reprod. Sci. 20, 483–499 (2013).\n 23. Australian Government Department of Health. National Action Plan for Endometriosis. (2018).\n 24. Simoens, S. et al. Endometriosis cost assessment (the EndoCost Study): a cost-of-illness study protocol. Gynecol. Obstet. Invest. \n71, 170–176 (2011).\n 25. Harris, P . A. et al. Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for provid-\ning translational research informatics support. J. Biomed. Inform. 42, 377–381 (2009).\n 26. Statistics New Zealand. National population estimates: At 31 December 2021 – Infoshare tables. (2021).\n 27. Kennedy, S. et al. ESHRE guideline for the diagnosis and treatment of endometriosis. Hum. Reprod. 20, 2698–2704 (2005).\n 28. Dunselman, G. A. J. et al. ESHRE guideline: management of women with endometriosis. Hum. Reprod. 29, 400–412 (2014).\n 29. Lim, E.-J. et al. Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis \n(CFS/ME). J. Transl. Med. 18, 100 (2020).\n 30. Ramin-Wright, A. et al. Fatigue – a symptom in endometriosis. Hum. Reprod. 33, 1459–1465 (2018).\n 31. Tripoli, T. M. et al. Evaluation of quality of life and sexual satisfaction in women suffering from chronic pelvic pain with or without \nendometriosis. J. Sex. Med. 8, 497–503 (2011).\n 32. Armour, M., Hawkey, A., Sowbhagya, M., Diezel, H. & Chalmers, K. J. ‘ A day to day struggle’: a comparative qualitative study of \nexperiences of women with endometriosis and chronic pelvic pain. Prepr. (Version 1) Available Res. Sq. https:// doi. org/ 10. 21203/ \nrs.3. rs- 289745/ v1 (2021).\n 33. Armour, M. et al. Menstrual health literacy and management strategies in young women in Australia: a National Online Survey \nof Y oung Women Aged 13–25 Y ears. J. Pediatr. Adolesc. Gynecol. 34, 135–143 (2021).\n 34. Crampton, P ., Weaver, N. & Howard, A. Holding a mirror to society? The sociodemographic characteristics of the University of \nOtago’s health professional students. New Zealan 125, 12–29 (2012).\n 35. Salmond, C., Crampton, P ., King, P . & Waldegrave, C. NZiDep: A New Zealand index of socioeconomic deprivation for individuals. \nSoc. Sci. Med. 62, 1474–1485 (2006).\n 36. Jatrana, S. & Crampton, P . Gender differences in financial barriers to primary health care in New Zealand. J. Prim. Health Care 4, \n113 (2012).\n 37. Jatrana, S. & Crampton, P . Primary health care in New Zealand: Who has access?. Health Policy (New York). 93, 1–10 (2009).\n 38. Ministry of Health. New Zealand Health Survey: Annual update of key findings 2012/13. (2013).\n 39. Ministry of Health. Annual Update of Key Results 2015/16: New Zealand Health Survey. (2016).\n 40. Ministry of Health. Annual Data Explorer 2019/20: New Zealand Health Survey. (2020).\n 41. Joseph, K. & Mills, J. Unmet treatment needs in patients with chronic pelvic pain in a New Zealand gynaecology service. Aust. \nNew Zeal. J. Obstet. Gynaecol. 59, 856–860 (2019).\n 42. Armour, M., Dahlen, H. G. & Smith, C. A. More than needles: the importance of explanations and self-care advice in treating \nprimary dysmenorrhea with acupuncture. Evid. Based Complement. Altern. Med. 2016, 1–11 (2016).\n 43. Wong, L. P . Attitudes towards dysmenorrhoea, impact and treatment seeking among adolescent girls: A rural school-based survey. \nAust. J. Rural Health 19, 218–223 (2011).\n 44. Agarwal, S. K. et al. Clinical diagnosis of endometriosis: a call to action. Am. J. Obstet. Gynecol. 220(354), e1-354.e12 (2019).\n 45. Women’s Health Action. A Case for a National Women’s Health Strategy in Aotearoa New Zealand by Women’s Health Action. (2014).\n 46. World Health Organization. Endometriosis. https:// www. who. int/ news- room/ fact- sheets/ detail/ endom etrio sis (2021).\n 47. Ministry of Health. Diagnosis and Management of Endometriosis in New Zealand. (2020).\n 48. The Royal Australian and New Zealand College of Obstetricians and Gynaecologists. Endometriosis Clincial Practice Guidelines . \n(2021).\n 49. Ministry of Health. Content Guide 2019/20: New Zaland Health Survey. (2020).\n 50. Statistics New Zealand. 2018 Census ethnic group summaries. (2018).\n 51. Harris, R. et al. Effects of self-reported racial discrimination and deprivation on Māori health and inequalities in New Zealand: \ncross-sectional study. Lancet 367, 2005–2009 (2006).\n 52. Ratima, M. M. et al.  Strengthening Māori participation in the New Zealand health and disability workforce. Med. J. Aust.  186, \n541–543 (2007).\n 53. Medical Council of New Zealand. Best health outcomes for Maori: Practice implications . https:// www. mcnz. org. nz/ assets/ News- \nand- Publi catio ns/ State ments/ Best- health- outco mes- for- Maori. pdf (2006).\n 54. Robson, B. & Ellison-Loschmann, L. Māori and cancer care in Aotearoa/New Zealand - responses to disparities. Eur. J. Cancer \nCare (Engl) 25, 214–218 (2016).\n 55. Priest, P . et al. Determinants of inequalities in cervical cancer stage at diagnosis and survival in New Zealand. Cancer Causes \nControl 21, 209–214 (2010).\n 56. Priest, P . et al. Pathways to diagnosis of cervical cancer: screening history, delay in follow up, and smear reading. BJOG An Int. J. \nObstet. Gynaecol. 114, 398–407 (2007).\n\n9\nVol.:(0123456789)Scientific Reports |         (2022) 12:4425  | https://doi.org/10.1038/s41598-022-08464-x\nwww.nature.com/scientificreports/\n 57. McLeod, M. et al. Improving survival disparities in cervical cancer between Māori and non-Māori women in New Zealand: a \nnational retrospective cohort study. Aust. N. Z. J. Public Health 34, 193–199 (2010).\n 58. De Graaff, A. A. et al. Quality of life outcomes in women with endometriosis are highly influenced by recruitment strategies. Hum. \nReprod. 30, 1331–1341 (2015).\nAcknowledgements\nThe research team would like to acknowledge respondents who provided invaluable insight into the data gathered, \nand specifically to those involved in promotion and recruitment of respondents within the survey.\nAuthor contributions\nAll authors contributed significantly to this work. J.T.S., M.A. and A.S. designed the study using the WERF \nEndoCost tool and learnings taken from the previous Australian  survey11,19. J.T.S., M.A., A.S. and D.B. designed \nthe recruitment strategy for an Aotearoa New Zealand context and initially promoted the research material, \nhowever further recruitment efforts were assisted by all members of the research team. A.A. developed the online \nsurvey and managed the online survey and data collection process. A.E. performed the statistical analysis. Clini-\ncal oversight and application at all stages of the research were performed by M.E., N.J., J.M., J.G. and M.A. J.T.S. \nand M.A. contributed widely to manuscript writing and critical recommended revisions. All authors reviewed \nand contributed to the manuscript and approved final draft for submission.\nCompeting interests \nThe authors declare no competing interests.\nAdditional information\nSupplementary Information The online version contains supplementary material available at https:// doi. org/ \n10. 1038/ s41598- 022- 08464-x.\nCorrespondence and requests for materials should be addressed to J.T.-S.\nReprints and permissions information is available at www.nature.com/reprints.\nPublisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and \ninstitutional affiliations.\nOpen Access  This article is licensed under a Creative Commons Attribution 4.0 International \nLicense, which permits use, sharing, adaptation, distribution and reproduction in any medium or \nformat, as long as you give appropriate credit to the original author(s) and the source, provide a link to the \nCreative Commons licence, and indicate if changes were made. The images or other third party material in this \narticle are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the \nmaterial. If material is not included in the article’s Creative Commons licence and your intended use is not \npermitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from \nthe copyright holder. To view a copy of this licence, visit http:// creat iveco mmons. org/ licen ses/ by/4. 0/.\n© The Author(s) 2022","source_license":"CC0","license_restricted":false}