{"paper_id":"610ce582-11db-4085-80da-2698c9502e25","body_text":"This may be the author’s version of a work that was submitted/accepted\nfor publication in the following source:\nY oung, Kate, Kirkman, Maggie, Holton, Sara, Rowe, Heather, & Fisher,\nJane\n(2018)\nFertility experiences in women reporting endometriosis: Findings from the\nUnderstanding Fertility Management in Contemporary Australia survey.\nThe European Journal of Contraception and Reproductive Health Care ,\n23(6), pp. 434-440.\nThis ﬁle was downloaded from: https://eprints.qut.edu.au/136614/\n© 2018 The European Society of Contraception and Reproductive\nHealth\nThis work is covered by copyright. Unless the document is being made available under a\nCreative Commons Licence, you must assume that re-use is limited to personal use and\nthat permission from the copyright owner must be obtained for all other uses. 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If there is any doubt, please refer to the published source.\nhttps://doi.org/10.1080/13625187.2018.1539163\n\nFertility experiences among women reporting endometriosis: Findings from the \nUnderstanding Fertility Management in Contemporary Australia survey  \nKate Young, Maggie Kirkman, Sara Holton, Heather Rowe, and Jane Fisher \nAbstract \nPurpose: To examine the fertility experiences of women reporting and not reporting \nendometriosis in a population-based survey. \nMaterials and methods: A cross-sectional survey among a community sample of 1543 women \nin Australia. Data were analysed to compare fertility management between women who did \nand did not report endometriosis. Factors associated with unintended pregnancy, infertility \ndiagnosis, time to conception and live birth were identified through multivariable analyses.  \nResults: While individual contraceptive use did not differ by endometriosis status, avoiding \npregnancy was less important to women reporting endometriosis (50.5%) than to others \n(68.7%; p<0.001). Women reporting endometriosis were approximately 3 times more likely to \nreport an infertility diagnosis— the majority (39.7%) of which were ‘unexplained female or \nmale infertility’ (p<0.001)—and 6 times more likely to report taking longer than 12 months to \nconceive than those who did not report endometriosis (p<0.001). However, there were no \nendometriosis-associated differences in women’s reports of unintended pregnancy, abortion, \nhaving been pregnant, or having had a live birth. \nConclusions: Our findings counter the common assertion that women with endometriosis are \nunlikely to conceive and support the need for healthcare and information that addresses all \naspects of fertility management (not just infertility) for women with endometriosis. \nKeywords: endometriosis; fertility; infertility; unintended pregnancy; abortion; surveys and \nquestionnaires \n  \n\nEndometriosis is a chronic inflammatory condition estimated to affect 1.5% (population-based \nstudies) to 15% (clinic-based studies) of women [1]. There is a known association between \nendometriosis and infertility; however, the strength of this association is not well established [2,3]. \nRecent research suggests that the infertility risk posed by endometriosis is considerably less than \nhistorically stated within the research and medical literature [4,5]. Frequently cited statistics that \n30–40% of women with endometriosis experience infertility are largely based on small samples \n(likely to be under-powered) [3] and from populations known to be more likely to experience \nadverse outcomes, such as women attending specialist treatment services and endometriosis support \ngroups [4].  \nPopulation-based studies suggest a lower percentage of women with endometriosis \nexperience infertility. Of women aged 28-33 years who reported having attempted conception \n(n=5936) and been diagnosed with endometriosis (n=914) in the Australian Longitudinal Study on \nWomen’s Health survey, 15% (n=137) reported experiencing infertility [6]; 11.6% (n=337) of \nwomen aged 18-49 years with endometriosis reported infertility in a United States (US) cross-\nsectional survey of 48 020 women in the community [7]; and 10% (n=256) of women aged 15 years \nand older on a Canadian regional hospital database who were diagnosed with endometriosis were \nalso diagnosed with infertility (of a total 6845 studied patients) [8]. This is in comparison to the 9% \nobserved in the general population globally, as determined by a systematic review of 25 population \nsurveys of a total 172 413 women [9].  \nEndometriosis has been reported in up to 50% of women with infertility [3]. However, this \nis problematic evidence of endometriosis-associated infertility risk given that these women may \nhave otherwise been asymptomatic (and thus never diagnosed had they not tried to conceive) and \nthat endometriosis may still not explain their infertility [5].  \nPotential infertility is known to be of concern to many women diagnosed with endometriosis \n[10,11]. (Women have, however, stated that they do not wish to have their care prioritised around \nthis without consultation [10].) Consistent with women’s accounts of healthcare for endometriosis \n\nand fertility [10], clinicians report that this concern is often compounded by “Dr Google, the \ngeneral public, and some doctors” who overstate the likelihood of infertility [12]. Further, \nhealthcare for endometriosis is known to be subject to ‘medical myths’ (for example, pregnancy as \na cure for endometriosis) that reflect sociohistorical constructions of women and their bodies as \nbeing ‘biologically destined’ for motherhood, rather than research evidence [10,13,14]. It is not \nknown whether misconceptions around endometriosis and infertility affect women’s reproductive \nplanning and associated care.  \nThe aim of this research was to compare the fertility experiences of women with and \nwithout endometriosis, using data from a population-based survey of women in Australia of \nreproductive age. Specifically, we considered self-reported contraception use, attempts to conceive, \nand pregnancy outcomes. \nMaterials and methods \nStudy design \nThis was a component of an investigation of the individual and sociocultural factors associated with \nfertility management among women and men of reproductive age in Australia. A cross-sectional \nsurvey was conducted with a population-based sample; the method has been described in detail \nelsewhere [15,16], and briefly, here. \nSample and recruitment \nWomen and men aged 18 to 50 years were randomly selected from the Australian electoral roll by \nthe Australian Electoral Commission with 104 (52 women, 52 men) electors selected from the 150 \nfederal electoral zones. (The analysis reported here includes data from female respondents.) The \nanonymous, self-administered questionnaire was mailed in late 2013 to eligible people, followed by \na reminder letter three weeks later. The survey was available online and in paper format (to be \nreturned by reply-paid envelope). \n\nData source and management \nThe study-specific questionnaire consisted of 91 predominantly fixed-choice questions that assessed \nrespondents’ sociodemographic characteristics, reproductive experiences, contraceptive use, \nchildbearing desires and expectations, and past and present health status. The current study utilised \nthe following survey items.  \nDemographic variables \nAll demographic characteristics were recoded into binary variables: age (35 years or older/34 years \nor younger); Aboriginal and Torres Strait Islander heritage (yes/no), country of birth \n(Australia/other), sexual identity (heterosexual/other), relationship status (married or de facto/not \nmarried or de facto), highest level of education (post-secondary qualification/no post-secondary \nqualification), private health insurance status (yes/no), and rurality (metropolitan/rural). \nAvoiding pregnancy \nCurrent contraception method was measured by asking respondents to select all methods that they \nor their partner were using from a list of 18 options (specified in Table 2). Respondents who \nselected at least one method were classified as being current users of contraception. To compare \ncontraceptive effectiveness, each method was recoded into one of three categories according to the \nCentres for Disease Control and Prevention levels of family planning effectiveness [17].  \nRespondents were asked, Thinking about your life right now, how important is it to you to \navoid becoming pregnant? The 5-point response scale was recoded to ‘not important’ (not \napplicable, not at all important) or ‘important’ (a little important, somewhat important, very \nimportant). Respondents not avoiding pregnancy were asked to indicate all applicable reasons from \na list of 15 options. \nAttempting pregnancy \nRespondents were asked, Have you ever tried to get pregnant or achieve pregnancy with a partner? \n\n(yes/no). Those who selected ‘yes’ were asked the youngest age at which they first attempted \nconception. Responses were recoded into ‘30 years or younger’ (less than 20 years, 21-30 years) or \n‘older than 30 years’ (31-40 years, more than 40 years).  \nTwo items measured respondents’ experience of infertility: (1) Have you ever had problems \nwith fertility? (yes/no). Those selecting ‘yes’ were asked, (2) Have you and your (current or \nprevious) partner together ever had a diagnosis of infertility? The six response options were \nrecoded to ‘no’ and ‘yes’ (yes, but have not sought help or treatment; yes, have been diagnosed \nwith female infertility; yes, have been diagnosed with male infertility; yes, have been diagnosed \nwith female and male infertility; and yes, have sought help for unexplained infertility [male or \nfemale]). \nPregnancy and birth experiences \nResponses to Have you (or a partner with you) ever been pregnant? were recoded as ‘yes’ \n(previously pregnant, currently pregnant) or ‘no’ (no, I don’t know). \nA question stem, How many times that you know about have you, or you together with a \npartner, was linked to the following items: had an accidental pregnancy?; had a live birth?; and \nhad an abortion for other reasons? (that is, excluding fetal abnormalities). Responses were coded \nas having experienced the outcome or not. \nRespondents who reported a pregnancy were asked their (or their pregnant partner’s) age in \nyears at first pregnancy and how long it took to conceive. Responses to the latter were recoded as \n‘less than 12 months’ or ‘more than 12 months,’ given that 12 months is the clinically expected \ntime to conception with frequent unprotected intercourse [18]. Respondents were also asked \nwhether they used fertility treatment such as IVF to achieve their first pregnancy (yes/no).  \nData management and analysis \nData were entered into an SPSS database and analysed using IBM SPSS Statistics version 20 \nsoftware. In addition to descriptive statistics, univariate tests were conducted; chi-square tests for \n\nindependence were used for categorical and t-tests for continuous variables.  \nFour outcomes of theoretical interest (unintended pregnancy, infertility diagnosis, time to \nconception, live birth) were assessed with separate binomial logistic regressions. Demographic \nvariables and reported endometriosis status were entered as potential predictors for each analysis. \nRowe et al. [15] previously identified factors associated with unintended pregnancy for this study \nsample: living in a rural location, ever having experienced sexual coercion, and experiencing \nsocioeconomic disadvantage (as measured by private health insurance; see [15] for further \nexplanation). Therefore, ‘ever having experienced sexual coercion’ was also included as a potential \npredictor in each of the logistic regressions.  \nEthical approval \nThe research was approved by the Human Research Ethics Committees of Monash University \n(CF12/0302-2012000125) and Monash Health (11280B).  \nResults \nCompared to available Australian population statistics, respondents were less likely to identify as \nbeing of Aboriginal and/or Torres Strait Islander heritage or to live in a rural area; and were more \nlikely to have been born in Australia, hold a post-secondary qualification, be partnered, and have \nprivate health insurance (see Table 1).  \nOf the 1543 women who completed the survey (response = 19.8%), 107 (6.9%) reported \never having been given a diagnosis of endometriosis. This is consistent with what has been \ndescribed [19] as the best available Australian population prevalence estimate of 7% [20]. We \nfound no differences in sociodemographic characteristics between women who did and who did not \nreport endometriosis (Table 1).  \nAvoiding pregnancy \nWomen reporting endometriosis were significantly less likely to indicate that avoiding pregnancy \n\nwas important to them (50.5%) compared to those who did not report endometriosis (68.7%), χ2 (1, \nn=1454) = 14.11, p < 0.001. \nThe three most frequently reported reasons for not avoiding pregnancy were the same for all \nwomen regardless of endometriosis status (E=reported endometriosis; NE=did not report \nendometriosis): I/my partner has had tubal ligation/vasectomy/hysterectomy (E:16.8%, NE:14.4%), \nI have no sexual partner (E:10.3%, NE:7.2%), and We want to become pregnant (E:10.3%, \nNE:6.1%). For women reporting endometriosis, the fourth and fifth most frequent reasons were I \ndon’t think I can get pregnant (6.5%) and I don’t like the side effects of contraception (5.6%), \nwhereas the most common reason selected by women who did not report endometriosis was I \ndon’t/my partner doesn’t mind if we become pregnant (4.2%) and I don’t like the side effects of \ncontraception (4.1%). \nWomen reporting endometriosis did not differ significantly in current use of contraception \n(50.5%) compared to those who did not report endometriosis (54.2%), nor in the level of \neffectiveness of the contraceptive method being used (see Table 2).  \nAttempting pregnancy \nRespondents’ attempts to conceive are presented in Table 2 by reported endometriosis status. \nWomen reporting endometriosis were significantly more likely to indicate that they had tried to \nbecome pregnant and had experienced problems with fertility. Of those who reported fertility \nproblems, women with endometriosis were significantly more likely to indicate that they and/or \ntheir partner had received a diagnosis of infertility. The most common response option selected by \nboth groups of women reporting fertility problems was Yes, have sought help for unexplained \ninfertility (male or female) (E:39.7%; NE:22.9%).  \nPregnancy and birth experiences \nRespondents’ pregnancy and birth experiences are presented in Table 2. Women reporting \nendometriosis were no less likely to have experienced unintended pregnancy, abortion, pregnancy, \n\nand live birth than those who did not report endometriosis. However, they were significantly more \nlikely to report taking longer than 12 months to conceive their first pregnancy than those who did \nnot report endometriosis. They were also significantly more likely to indicate that they had used \nassisted reproductive technologies to conceive their first pregnancy. \nMultivariable analyses of factors associated with unintended pregnancy, infertility diagnosis, \ntime to conception, and live birth \nReported endometriosis status was a significant predictor of both infertility diagnosis and time \ntaken to conceive first pregnancy; women reporting endometriosis were approximately 3 times \nmore likely to report an infertility diagnosis (for them and/or their partner) and 6 times more likely \nto report taking longer than 12 months to conceive their first pregnancy than those who did not \nreport endometriosis (see Table 3). However, reported endometriosis status was not found to be \nsignificantly associated with whether women reported an unintended pregnancy or live birth.  \nDiscussion \nDrawing on data from a population-based survey, this study compared the fertility experiences of \nwomen who did and did not report endometriosis. To the best of our knowledge, this is the first \nstudy to explore contraception use and unintended pregnancy among women with endometriosis in \na population-based survey. The results are strengthened by the percentage of women reporting \nendometriosis being consistent with current Australian population prevalence estimates [19,20]. \nNevertheless, there were several potential limitations. The instrument measuring infertility \ndiagnosis did not define infertility; it thus may have been understood more broadly by respondents \nthan the clinical definition of “failure to achieve a clinical pregnancy after 12 months or more of \nregular unprotected sexual intercourse” [18]. Further, the associated survey item did not allow us to \ndetermine female-only infertility, as ‘unexplained infertility’ (the most common response option) \ndid not distinguish male from female-factor infertility. Some respondents may have reported \nendometriosis without the gold standard of surgical diagnosis and histological examination (which \n\nthe related survey item did not specify) [21]. Respondents may have been subject to recall bias, \nalthough no systematic bias would be expected and there is evidence that women reliably report \nreproductive events [22].  \nSummary of findings in relation to previous studies \nAvoiding pregnancy \nHormonal contraceptive methods are recommended to women with endometriosis for symptom \nmanagement [21]. This may partially explain why contraceptive use did not differ by reported \nendometriosis status despite women with endometriosis being less likely to indicate that avoiding \npregnancy was important to them and more commonly indicating a belief they could not get \npregnant. Although it has been found that women and men tend to overestimate their fertility \n[23,24], little is known about the fertility attitudes, knowledge, and behaviour of women with \nendometriosis [25]. It is possible that women with endometriosis may, in contrast, underestimate \ntheir fertility given that the endometriosis-associated infertility risk has historically been overstated \nin the medical and research literature, and consequently by some clinicians [10,12]. \nAttempting pregnancy \nWomen reporting endometriosis in our study were more likely to have attempted conception than \nthose who did not report the disease; several factors unique to women with endometriosis may \nexplain this. A qualitative study of women with endometriosis and their male partners found that \nsome couples reported having a child before their originally preferred time having anticipated that \nthey would encounter conception difficulties [26]. This is consistent with reports by women with \nother conditions where the disease or its treatment may adversely affect fertility, such as breast \ncancer [27] and diabetes [28]. Further, despite a lack of evidence to support its benefits, many \nwomen report that their treating doctors propose pregnancy as a ‘treatment’ option for \nendometriosis, whether or not they are in a position to welcome parenthood [11,14]. That few \n\nwomen question the legitimacy of this ‘treatment’ suggests its potential influence on women’s \ndecisions [10]. \nIn this study, 41% of all women with endometriosis reported that they and/or their partner \nhad been diagnosed as infertile. While this finding is consistent with the known association between \nendometriosis and infertility [2,3], it is likely an overestimate. Previous population-based studies \nwhich have defined infertility for respondents or who analysed patient records (rather than self-\nreport surveys), report considerably lower percentages (10–15%) of infertility among women \ndiagnosed with endometriosis [6–8]; as discussed above, our instrument did not provide a \ndefinition. Further, the findings of this research were likely subject to selection bias. Some women \nare diagnosed with endometriosis only when they encounter difficulty conceiving (i.e., not due to \nsymptoms); research suggests these women experience a reduced time to diagnosis [29,30]. Women \nwho encounter fertility difficulties may be more likely to complete surveys relevant to their \npersonal experience [15]. Thus, it is possible that this cross-sectional survey captured a higher \nproportion of women with endometriosis and fertility difficulties than are found in the general \npopulation.  \nPregnancy and birth experiences \nDespite the higher prevalence of infertility reported by women with endometriosis in the current \nstudy, endometriosis status was not associated with having been pregnant, or having an unintended \npregnancy, abortion, or live birth. However, women with endometriosis were more likely to have \ntaken longer than 12 months to conceive their first pregnancy and to have used assisted \nreproductive technology (ART).  \nIn one Australian study, 20.7% of women with endometriosis had used assisted conception \n[6]; in the US Nurses’ Health Study II, of 83% of women with endometriosis who reported having \nat least one child by age 40, 15% had used ovulation induction and 2% had used IVF [5]. Estimates \nof ART use in our survey (8.4%) may not be as high because the related item asked only about the \nfirst pregnancy and because some participants may have been too young to have been offered or \n\nrequested ART. In Australia, the average age of women undergoing an autologous ART cycle is 36 \nyears (40.9 with donor oocytes or embryos) [31]; the average age of our respondents was about 36 \nyears.  \nTime to conception and ART use are likely to be influenced by the known diagnosis delay \nfor endometriosis (an average of 5.5 years) [32]; this may also delay treatment—either for the \ndisease or for infertility, specifically—that increases fertility, possibly until beyond a woman’s \noptimal reproductive period [31, 33]. There is also currently little consensus on best practice for \nART use in women with endometriosis [21], suggesting the potential for diversity in practice and \nwomen’s experiences. \nAs far as we can establish, this is the first study to have considered unintended pregnancies \namong women with endometriosis. Similar findings have also been reported for women reporting \npolycystic ovarian syndrome (PCOS) in another component of this study [34]. Although unintended \npregnancy is judged to be a public health problem in many countries, including Australia, little \nattention has been paid to unintended pregnancy among women with chronic diseases despite \nevidence that they are at increased risk [35]. We speculate that misconceptions around \nendometriosis and infertility perpetuated by “some doctors” [12], including the promotion of \nfertility perseveration such as egg freezing by some clinicians [5,36]; the popular media [37]; and, \nanecdotally, in online patient literature, may have led some women to underestimate their fertility. \n(A similar observation has been made regarding PCOS [34].) Further, there is currently little \nguidance for clinicians as to how to provide fertility care for endometriosis that addresses women’s \ndiverse needs, including contraception [21].  \nImplications for clinicians and policy-makers \nThe results of this study demonstrate the need for women with endometriosis to receive fertility \ninformation and advice as part of standard endometriosis care. Comprehensive care needs to be \ntailored to each woman, considering her immediate and long-term fertility goals. Women \nthemselves have stated a preference for this approach [10] and it has been proposed as a key \n\ncomponent of reducing low-value care in endometriosis [38]. A reproductive life-plan template may \nfacilitate a conversation between women and their care providers within the time constraints of \nmodern healthcare settings [39]. Clinicians may also benefit from guidance which includes \nevidence-based information about what is and is not known about the association between \nendometriosis and infertility, and that actively dispels associated common misconceptions (e.g., \npregnancy is a treatment option); this is currently absent from leading clinical guidelines (e.g., \n[21]).  \nInformation provided by health organisations, health professionals, and consumer \norganisations about endometriosis and fertility needs to be balanced and evidence-based. As the \nmajority of women with endometriosis ultimately have children [5], it is unhelpful to women to \naddress infertility only; this fails to reflect most women’s experiences and undermines informed \ndecision-making to bring about optimal childbearing.  \nFuture research \nThese results reveal several knowledge gaps which require further research. (A) Further \ninvestigation of the use of contraception by women with endometriosis, for both contraceptive and \nnon-contraceptive purposes (such as managing symptoms), may inform appropriate resources for \nthis sub-population of women and their unique fertility management needs. (B) It would be useful \nto have a more comprehensive picture of women’s perceptions of the potential effect of \nendometriosis on their fertility and associated decision-making. Despite the emphasis on fertility in \nbiological research into endometriosis, few studies have considered the perspectives of women on \nthis subject [11]. (C) Given the limited research evidence to guide practice, it would be informative \nto investigate doctors’ opinions of, and practice, in relation to providing care for endometriosis and \nfertility. (D) There is a need for methodologically sound population data on the prevalence of \ninfertility among women with endometriosis [4,5], including its potential association with the \nknown diagnosis delay for endometriosis (specifically, whether timing of diagnosis explains \ninfertility risk beyond having endometriosis).  \n\n  \n\nConclusion \nWe used Australian population data to compare the fertility experiences of women with and without \nendometriosis. Women with endometriosis were more likely to have attempted conception, to have \nexperienced difficulties in conceiving, and to have used ART. However, there were no differences \naccording to endometriosis status in having been pregnant, having had a live birth, or having an \nunintended pregnancy. These results support the need for healthcare and information that addresses \nall aspects of fertility management (not just infertility) for women with endometriosis. \n  \n\nAcknowledgements \nThe authors wish to thank all respondents for their generous participation. We would also like to \nacknowledge the original collaborators of the larger study: Lynne Jordan, Kathy McNamee, Chris Bayly, \nJohn McBain, and Vikki Sinnott. We are grateful also to Dr Thach Tran for statistical advice.  \nThe study was funded by the Australian Research Council (LP100200432) in partnership with Family \nPlanning Victoria, Melbourne IVF, The Royal Women’s Hospital and the Victorian Government Department \nof Health. KY receives a stipend scholarship from the National Health and Medical Research Council and \nAustralian Rotary Health. JF is supported by a Monash Professorial Fellowship and the Jean Hailes \nProfessorial Fellowship which receives funding from the L and H Hecht Trust, managed by Perpetual \nTrustees Pty Ltd.  \n \n \n  \n\nReferences  \n1. Ballard K, Seaman H, De Vries C, et al. Can symptomatology help in the diagnosis of \nendometriosis? Findings from a national case–control study—Part 1. BJOG. \n2008;115(11):1382-1391. \n2. Gupta S, Goldberg JM, Aziz N, et al. Pathogenic mechanisms in endometriosis-associated \ninfertility. Fertil Steril. 2008;90(2):247-257.   \n3. Ozkan S, Murk W, Arici A. Endometriosis and infertility: Epidemiology and evidence-based \ntreatments. Ann N Y Acad Sci. 2008;1127:92-100.  \n4. De Graaff AA, Dirksen CD, Simoens S, et al. Quality of life outcomes in women with \nendometriosis are highly influenced by recruitment strategies. Hum Reprod. \n2015;30(6):1331-1341. \n5. Prescott J, Farland LV, Tobias DK, et al. A prospective cohort study of endometriosis and \nsubsequent risk of infertility. Hum Reprod. 2016;31(7):1475-1482. \n6. Herbert DL, Lucke JC, Dobson AJ. Infertility, medical advice and treatment with fertility \nhormones and/or in vitro fertilisation: A population perspective from the Australian \nLongitudinal Study on Women's Health. Aust N Z J Public Health. 2009;33(4):358-364.  \n7. Fuldeore MJ, Soliman AM. Prevalence and symptomatic burden of diagnosed endometriosis \nin the United States: National estimates from a cross-sectional survey of 59,411 women. \nGynecol Obstet Invest. 2017;82(5):453-461. \n8. Paris K, Aris A. Endometriosis-associated infertility: A decade's trend study of women from \nthe Estrie Region of Quebec, Canada. Gynecol Endocrinol. 2010;26(11):838-842.  \n9. Boivin J, Bunting L, Collins JA, et al. International estimates of infertility prevalence and \ntreatment-seeking: Potential need and demand for infertility medical care. Hum Reprod. \n2007;22(6):1506-1512. \n10. Young K, Fisher J, Kirkman M. Endometriosis and fertility: Women's accounts of \nhealthcare. Hum Reprod. 2016;31(3):554-562.  \n11. Young K, Fisher J, Kirkman M. Women's experiences of endometriosis: A systematic \nreview and synthesis of qualitative research. J Fam Plann Reprod Health Care. \n2015;41(3):225-234. \n12. Young K, Fisher J, Kirkman M. Clinicians' perceptions of women's experiences of \nendometriosis and of psychosocial care for endometriosis. Aust N Z J Obstet Gynaecol. \n2017;57(1):87-92. \n13. Jones CE. Wandering wombs and “female troubles”: The hysterical origins, symptoms, and \ntreatments of endometriosis. Womens Stud. 2015;44(8):1083-1113. \n\n14. Leeners B, Damaso F, Ochsenbein-Kölble N, et al. The effect of pregnancy on \nendometriosis—facts or fiction? Hum Reprod Update. 2018;24(3):290- 299.  \n15. Rowe H, Holton S, Kirkman M, et al. Prevalence and distribution of unintended pregnancy: \nThe Understanding Fertility Management in Australia national survey. Aust N Z J Public \nHealth. 2016;40(2):104-109. \n16. Holton S, Rowe H, Kirkman M, et al. Long-acting reversible contraception: Findings from \nthe Understanding Fertility Management in Contemporary Australia survey. Eur J \nContracept Reprod Health Care. 2016;21(2):116-131. \n17. Effectiveness of family planning methods [Internet] Atlanta (GA): Centers for Disease \nControl and Prevention; 2015 [cited 2018 July 4]; Available from: \nhttps://www.cdc.gov/reproductivehealth/unintendedpregnancy/pdf/contraceptive_methods_5\n08.pdf \n18. Zegers-Hochschild F, Adamson GD, de Mouzon J, et al. The International Committee for \nMonitoring Assisted Reproductive Technology (ICMART) and the World Health \nOrganization (WHO) revised glossary on ART terminology, 2009. Hum Reprod. \n2009;24(11):2683-2687. \n19. Simoens S, Dunselman G, Dirksen C, et al. The burden of endometriosis: Costs and quality \nof life of women with endometriosis and treated in referral centres. Hum Reprod. 2012 \nMay;27(5):1292-1299. \n20. Treloar SA, O'Connor DT, O'Connor VM, et al. Genetic influences on endometriosis in an \nAustralian twin sample. Fertil Steril. 1999;71(4):701-710.  \n21. Dunselman GA, Vermeulen N, Becker C, et al. ESHRE guideline: Management of women \nwith endometriosis. Hum Reprod. 2014;29(3):400-412. \n22. Herbert D, Lucke J, Dobson A. Agreement between self-reported use of in vitro fertilization \nor ovulation induction, and medical insurance claims in Australian women aged 28-36 years. \nHum Reprod. 2012;27(9):2823-2828. \n23. Mills M, Rindfuss RR, McDonald P, et al. Why do people postpone parenthood? Reasons \nand social policy incentives. Hum Reprod Update. 2011;17(6):848-860. \n24. Hammarberg K, Setter T, Norman RJ, et al. Knowledge about factors that influence fertility \namong Australians of reproductive age: A population-based survey. Fertil Steril. \n2013;99(2):502-507.  \n25. Holton S, Kirkman M, Rowe H, et al. The childbearing concerns and related information \nneeds and preferences of women of reproductive age with a chronic, noncommunicable \nhealth condition: A systematic review. Womens Health Issues. 2012;22(6):e541-552. \n\n26. Hudson N, Culley L, Law C, et al. 'We needed to change the mission statement of the \nmarriage': Biographical disruptions, appraisals and revisions among couples living with \nendometriosis. Sociol Health Illn. 2016;38(5):721-735. \n27. Kirkman M, Winship I, Stern C, et al. Women's reflections on fertility and motherhood after \nbreast cancer and its treatment. Eur J Cancer Care. 2014;23(4):502-513. \n28. Hannan M, Happ MB, Charron-Prochownik D. Mothers' perspectives about reproductive \nhealth discussions with adolescent daughters with diabetes. Diabetes Educ. 2009;35(2):265-\n273. \n29. Dmowski WP, Lesniewicz R, Rana N, et al. Changing trends in the diagnosis of \nendometriosis: A comparative study of women with pelvic endometriosis presenting with \nchronic pelvic pain or infertility. Fertil Steril. 1997;67(2):238-243. \n30. Arruda MS, Petta CA, Abrão MS, et al. Time elapsed from onset of symptoms to diagnosis \nof endometriosis in a cohort study of Brazilian women. Hum Reprod. 2003;18(4):756-759. \n31. Macaldowie A, Wang Y, Chambers G, et al. Assisted reproductive technology in Australia \nand New Zealand 2010. Assisted reproduction technology series no. 16. Cat. no. PER 55. \nCanberra: Australian Institute of Health and Welfare. 2012. \n32. De Graaff AA, D'Hooghe TM, Dunselman GA, et al. The significant effect of endometriosis \non physical, mental and social wellbeing: Results from an international cross-sectional \nsurvey. Hum Reprod. 2013;28(10):2677-2685. \n33. Rizk B, Turki R, Lotfy H, et al. Surgery for endometriosis-associated infertility: Do we \nexaggerate the magnitude of effect? Facts Views Vis Obgyn. 2015;7(2):109-118. \n34. Holton S, Papanikolaou V, Hammarberg K, et al. Fertility management experiences of \nwomen with polycystic ovary syndrome: Findings from the Understanding Fertility \nManagement in Contemporary Australia survey. Eur J Contracept Reprod Health Care. 2018 \n[2018 July 4]; 1-6. DOI:10.1080/13625187.2018.1483020 \n35. Chuang C, Velott D, Weisman C. Exploring knowledge and attitudes related to pregnancy \nand preconception health in women with chronic medical conditions. Matern Child Health J. \n2010;14(5):713-719.  \n36. Somigliana E, Vigano P, Filippi F, et al. Fertility preservation in women with endometriosis: \nFor all, for some, for none? Hum Reprod. 2015;30(6):1280-1286. \n37. Carpan C. Representations of endometriosis in the popular press: \"The Career Woman's \nDisease\". Atlantis. 2003;27(2):32-40. \n38. Vercellini P, Giudice LC, Evers JLH, et al. Reducing low-value care in endometriosis \nbetween limited evidence and unresolved issues: A proposal. Hum Reprod. \n2015;30(9):1996-2004. \n\n39. Tydén T, Verbiest S, Van Achterberg T, et al. Using the reproductive life plan in \ncontraceptive counselling. Ups J Med Sci. 2016;121(4):299-303.  \n40. Australian Beureau of Statistics. 3238.0.55.001 - Estimates of Aboriginal and Torres Strait \nIslander Australians, June 2011. Canberra (ACT): ABS. 2013.  \n41. Australian Beureau of Statistics. Estimated resident population by country of birth, 30 June \n1992 to 2015. Canberra (ACT): ABS. 2016.  \n42. Australian Beureau of Statistics. 2011 census of population and housing: B23 relationship in \nhousehold by age by sex. Canberra (ACT): ABS. 2016. \n43. Australian Beureau of Statistics. 4102.0 - Australian social trends, Sep 2012. Canberra \n(ACT): ABS. 2012.  \n44. Richters J, Altman D, Badcock PB, et al. Sexual identity, sexual attraction and sexual \nexperience: The second Australian Study of Health and Relationships. Sex Health. \n2014;11(5):451-60. \n45. Australian Beureau of Statistics. 4364.0 - National Health Survey: Summary of results, \n2007-2008 (Reissue). Canberra (ACT): ABS: 2009.  \n46. Australian Bureau of Statistics. 3412.0 - Migration, Australia, 2009-10 Canberra (ACT): \nABS. 2011.  \n  \n\nTable 1: Demographic characteristics of women who did and did not report endometriosis. \n Endometriosis \nreported (n=107) \nEndometriosis \nnot reported \n(n=1436) \nTotal Australia \nMean (SD) age (years) 37.4 (8.2) 35.8 (9.2) 35.9 (9.1) - \n n (%) n (%) N (%) % \nAboriginal and/or Torres Strait \nIslander heritage \n2 (1.9) \n \n23 (1.6) \n \n25 (1.6) 3.0a** \nBorn in Australia 84 (78.5) \n \n1225 (85.3) \n \n1309 (84.8) 68.3a* \nPost-secondary qualification 84 (78.5) \n \n1065 (74.3) \n \n1149 (74.5) 56.0b* \nHeterosexual 103 (96.3) \n \n1367 (95.7) \n \n1470 (95.3) 96.3c \nPartnered (married or de facto)  80 (74.8) \n \n1050 (73.1) \n \n1130 (73.2) 52.9a* \nPrivate health insurance 76 (71.7) \n \n962 (67.2) \n \n1038 (67.3) 51.1d* \nRural 28 (26.4) 456 (31.9) 484 (31.4) 27.5e* \nNote. *p < 0.001; **p = 0.002. \naPopulation data for women in Australia aged 15–54 years [40–42] \nbPopulation data for women in Australian aged 15–64 years [43] \ncPopulation data for women in Australia aged 16–69 years [44] \ndPopulation data for persons in Australia aged 15–54 years [45] \nePopulation data for persons in Australia aged 15–64 years [46] \n  \n\nTable 2: Current contraceptive use; attempting pregnancy; and pregnancy and birth experiences by \nendometriosis status. \n Endometriosis  \nreported (n=107) \nEndometriosis \nnot reported \n(n=1436) \nχ2/t p-\nvalue/95% \nCI \n n % n %   \nCurrent contraceptive use \nLeast effectivea 25 23.4 417 29.3 1.3 0.254 \nModerately effectiveb 19 17.8 320 22.3 0.9 0.332 \nMost effectivec 16 15.0 142 9.9 2.3 0.133 \nAttempting pregnancy       \nEver tried to become pregnant  84 79.2 941 65.9 7.3 0.007 \nFirst tried to become pregnant below age 30  60 71.4 650 69.3 0.1 0.777 \nEver had fertility problems 58 69.0 301 32.0 44.8 <0.001 \nEver had infertility diagnosisd 44 75.9 141 47.5 14.6 <0.001 \nPregnancy and birth experiences       \nEver been pregnant 80 74.8 970 68.0 1.8 0.177 \nMean (SD) age at first pregnancy (years) 26.84 (5.29) 26.59 (5.53) -\n0.376 \n-1.51–1.02 \n >12 months to first pregnancy 7 17.9 26 4.7 9.7 0.002 \nEver had unintended pregnancy 29 27.1 378 26.3 0.0 0.950 \nEver had abortion 14 13.1 216 15.0 0.2 0.683 \nEver had live birth 62 57.9 793 55.2 0.2 0.656 \nART for first pregnancy 9  8.4 37 2.6 9.8 0.002 \nNote. For current contraceptive use, respondents could select more than one option. Numbers in \nbold indicate statistically significant differences. \naWithdrawal, male condom, female condom, fertility awareness, abstinence, safe times, spermicide, \nherbal contraceptive, douching \nbDiaphragm, injection, progesterone-only pill, oral contraceptive pill, vaginal ring, emergency \ncontraceptive pill \ncImplant, intrauterine device, vasectomy*, tubal ligation*, hysterectomy* \n*These were not given as response options but entered as text by participants specifying ‘other.’ \n\ndDue to the wording of the survey question, this could include male infertility diagnoses. \nRespondents to this question were those who had answered ‘yes’ to ever having fertility problems. \n  \n\nTable 3: Factors associated with unintended pregnancy, infertility diagnosis, time to conception and \nlive birth. \n  95% CI for odds ratio  \nIndependent variables Odds \nratio \nLower Upper Sig \nUnintended pregnancy \nAge 2.08 1.61 2.70 0.001 \nAboriginal and/or Torres Strait Islander \nheritage \n1.16 0.44 3.06 0.760 \nCountry of birth 1.05 0.76 1.46 0.770 \nSexuality 0.92 0.49 1.71 0.791 \nRelationship status 1.63 1.20 2.20 0.002 \nEducation 0.84 0.64 1.12 0.212 \nPrivate health insurance  0.60 0.47 0.78 0.935 \nRurality 1.16 0.90 1.50 0.273 \nExperienced sexual coercion  1.83 1.41 2.37 0.000 \nEndometriosis 1.02 0.64 1.61 0.935 \nInfertility diagnosis \nAge 1.45 0.88 2.39 0.141 \nAboriginal and/or Torres Strait Islander \nheritage \n0.00 0.00 0.00 0.999 \nCountry of birth 1.15 0.63 2.11 0.656 \nSexuality 3.48 0.34 35.2 0.291 \nRelationship status 0.99 0.45 2.20 0.982 \nEducation 0.98 0.54 1.79 0.941 \nPrivate health insurance  0.99 0.60 1.66 0.965 \nRurality 1.58 0.97 2.59 0.069 \nExperienced sexual coercion  1.13 0.70 1.84 0.618 \nEndometriosis 3.34 1.72 6.50 0.001 \n  \n\nTime to conception \nAge 1.06 0.46 2.43 0.891 \nAboriginal and/or Torres Strait Islander \nheritage \n0.00 0.00 0.00 0.999 \nCountry of birth 0.47 0.15 1.48 0.195 \nSexuality 0.00 0.00 0.00 0.999 \nRelationship status 0.92 0.25 3.44 0.905 \nEducation 3.23 0.94 11.12 0.064 \nPrivate health insurance  1.67 0.61 4.61 0.320 \nRurality 0.97 0.45 2.12 0.942 \nExperienced sexual coercion  0.98 0.40 2.41 0.942 \nEndometriosis 5.63 2.12 14.94 0.001 \nLive birth \nAge 6.31 4.91 8.10 0.001 \nAboriginal and/or Torres Strait Islander \nheritage \n0.72 0.26 2.02 0.535 \nCountry of birth 0.80 0.57 1.13 0.212 \nSexuality 0.42 0.21 0.83 0.013 \nRelationship status 5.90 4.38 7.95 0.001 \nEducation 1.30 0.96 1.74 0.086 \nPrivate health insurance  0.90 0.68 1.18 0.427 \nRurality 1.43 1.09 1.88 0.010 \nExperienced sexual coercion  0.94 0.71 1.24 0.648 \nEndometriosis 1.12 0.70 1.79 0.630 \nNote. The reference category for each independent variable was the lesser or absence of the \nvariable.","source_license":"CC0","license_restricted":false}