{"paper_id":"5baabc4f-15bb-4cd2-b508-51aeb1f5a2bd","body_text":"Original Article  | JOGCR. 2022; 7(6): 479-488 \n     Volume 7, November – December 2022       Journal of Obstetrics, Gynecology and Cancer Research \n Journal of Obstetrics, Gynecology and Cancer Research | ISSN: 2476-5848 \n \nEndometriosis-associated Symptoms and Diagnostic Delay: An Online Survey \n \nMaryam Moradi1 , Azin Niazi2* , Melissa Parker3 , Anne Sneddon4,  \nVioleta Lopez5 , David Ellwood6  \n \n1. Department of Reproductive Health, Nursing and Midwifery Care Research Center, Mashhad University of Medical \nSciences, Mashhad, Iran  \n2. Department of Midwifery, School of Nursing and Midwifery, Mashhad University of Medical Sciences, Mashhad, Iran  \n3. Endometriosis Centre, Canberra Hospital, Canberra, Australia \n4. Department of Obstetrics and Gynecology, School of Medicine, Griffith University, Gold Coast, Australia  \n5. Chair Professor, School of Nursing, Hubei University of Medicine, Shiyan, China \n6. Department of Obstetrics and Gynecology, School of Medicine, Griffith University, Gold Coast, Australia \n \nArticle Info  ABSTRACT \n  \n          10.30699/jogcr.7.6.479 \n \n \n \nBackground & Objective: The aim of this study was to determine the endometriosis-\nassociated symptoms and diagnostic delay through an online survey. \nMaterials & Methods: A cross-sectional study was conducted in Australia using an \nonline\n web-based survey. All data were entered into and analyzed using the STATA \nsoftware (version 14.1). A total of 903 respondents completed an online survey from \nSeptember 2013 to October 2015. \nResults: Out of 903, 71.10% were Australians and 28.90% were Non-Australian, with \na self-reported diagnosis of endometriosis confirmed by surgery. Out of the participants, \n86.5% completed the online survey. Delay in diagnosis was 8.1±6.2 years. There was \nno difference in the age range (P = 0.35), mean age of onset of the first symptoms (P = \n0.93), and delay in diagnosis ( P = 0.11) between both groups. Most common \nendometriosis-related symptoms that all respondents had experienced in their lifetime \nwere period pain (98.1%), fatigue (94%), bloating (90.7%), ovulation pain (88.7%), \npelvi\nc pain (87.3%), pain during and before/after sexual activity (82.7%), and heavy \nbleeding (82.2%) .Treatments used by affected women included: pain killers (96%), \nhormonal medication (84.7%), surgical treatments (84.5%), and delayed fertility \n(37.1%).  \nConclusion: Vast similarities in demographic s and endometriosis -associated \nsymptoms among the Australian and non-Australian women with endometriosis \nsupport the universality of the disease characteristics. Delay in diagnosis of \nendometriosis is a problem and the reasons for delayed diagnosis must be understood \nto try to shorten this delay. Besides pain, patients with endometriosis suffer from a \nvariety of other symptoms; hence, any treatment must take into account the most \nprominent symptoms. \nKeywords: Diagnosis, Diagnostic Delay, Endometriosis, Symptoms  \nReceived:  2021/10/21; \nAccepted: 2022/01/09; \nPublished Online: 09 Sep 2022; \n \n \nUse your device to scan and read the \narticle online \n \n Corresponding Information:  \nAzin Niazi, \nDepartment of Midwifery, School of Nursing \nand Midwifery, Mashhad University of \nMedical Sciences, Mashhad, Iran \n \nEmail: azin_niazi65@yahoo.com \n \n \n \n \n \n \nCopyright © 2022, This is an original open-access article distributed under the terms of the Creative Commons Attribution-noncommercial 4.0 International License \nwhich permits copy and redistribution of the material just in noncommercial usages with proper citation. \n \n \nIntroduction\nEndometriosis is a debilitating gynecologic disease \ncharacterized by the presence of uterine epithelial and \nstromal tissue outside of the uterine cavity . It affects \nabout 10- 15% of women at reproductive age (1). \nAround 1 in 9 women born during 1973– 78 were \ndiagnosed with endometriosis by age 40– 44, based on \nthe Australian Longitudinal Study on Women's Health \nand there were around 34,200 endometriosis -related \nhospitalizations in Australia during 2016–17 (2). \n Women with endometriosis experience a variety of \npain symptoms. Up to 80% of women with \nendometriosis suffer from chronic pains such as \ndysmenorrhea, dyspareunia, persistent pelvic pain, \nnon-menstrual pelvic pain, and dyschezia (3), and it has \nbeen revealed that 47% of infertile women have \nendometriosis (4). \n Previous research has found the negative effects of \nendometriosis are significant and extensive (3). The \nphysical and psychological impacts of symptoms, often \nsevere and unpredictable (5), at a time in life when self-\nesteem, social involvement, school attendance, and \nperformance are critical for this patient population, can \nlead to the development of serious emotional issues and \n\n\nMaryam Moradi et al. 480 \n      Volume 7, November – December 2022       Journal of Obstetrics, Gynecology and Cancer Research \ncause long -term effects on their psychological well -\nbeing (6-8). \nThe basic epidemiology of endometriosis has been \ndifficult to be assessed for many reasons (9); for \ninstance, diagnosis can only be made definitely by \ndirect visualization during invasive laparoscopy or \nlaparotomy, and critically depends on the clinical \nexpertise of the surgeon. Pain symptoms related to \nperiods can also be perceived culturally by t he women \nas a normal event without seeking medical care (10). \nAs a result, many affected women remain such \nundiagnosed that a significant diagnostic delay of 11.7 \n± 9.05\n years was reported in the USA, and 8.0 ± 7.92  \nyears in the UK (11) . In a cross -sectional study \nconducted between 2008 and 2010 on women aged 18 \nto 45 years recruited from 10 countries, 745 were \nconsequently diagnosed with endometriosis, and \ndiagnostic delay was 6.7 ± 6.3 years in the affected \nwomen (12). \n \nStudies have described the characteristics of women \nwith endometriosis in two different populations, \nhowever only a few have investigated the \ndemographics as well as symptomatology of \nendometriosis in different geographic regions or \nethnicities. One study with similar demographics and \ncharacteristics of women with endometriosis in the \nUSA and the UK reported significant differences \nincluding early age at diagnosis\n and less frequency of \ncontraceptive use (13) . Ballweg (14)  reported that the \ndelay between the onset of symptoms and the actual \ndiagnosis of disease in over 7020 women with \nconfirmed endometriosis in the USA was 9.28 years. \nData from over 7000 confirmed endometriosis cases \nclearly show that delay in diagnosis (the average time \nfor diagnosis is 9 years) is a major problem and that \ncurrent treatments are far from satisfactory (14) .\n Reid \net al.  (15) through a cross -sectional survey of \nAustralian adults over 18  years found that the \nprevalence of self-reported diagnosed endometriosis in \nthe Australian women of reproductive age (18 -\n49 years) was 3.4% (22 out of 652) (15), which \ncorroborates a previous Australian research on this \nissue; however, the prevalence rate from this data set \nwas lower than the estimated prevalence from the \nGlobal Burden of Disease Study. Lack of awareness \nand lack o f communication about this condition \ncontribute to a delayed diagnosis of endometriosis (16). \nWith regards to endometriosis-associated symptoms, \nFuldeore et al.  (17) found that more women had \nmenstrual pelvic pain/cramping. However a study \nKconducted by Apostolopoulos  et al. (18) in the UK \nshowed that no difference in pain including \ndysmenorrhoea, dyspareunia, and dyschezia was found \nbetween the women with and without endometriosis. \nThe profile of endometriosis as a chronic condition is \nneeded to provide in formed and accurate \nunderstanding of endometriosis by individuals, \neducation and health professionals, and the community \nmore broadly. This will enable early recognition of \nsymptoms, greater awareness of treatment options, and \nunderstanding of the impact of the condition (17). The \naim of this study was to determine the endometriosis -\nassociated symptoms and diagnostic delay through an \nonline survey. \n \nMethods \nThe Checklist for Reporting Results of Internet E -\nSurveys (CHERRIES) was used to report the study \nresults (19). \nA cross-sectional study was conducted using a self-\nreport online survey in Australia. This article is part of \na larger study related to the development and validation \nof the Endometriosis Impact Questionnaire (EIQ) \n(20). \nAn online questionnaire including the demographic \nand medical questions was created using the Polling \nOnline system. Demographic and medical information \nform (Appendix 1), designed by the main researcher \nthrough an extensive literature review, and revised and \nfinalized by the research team, was used to collect data. \nThe form included such data as demographics, \ndiagnosis of endometriosis, educational level, \nemployment status, obstetrics history including history \nof pregnancy and having children, and history of \ndelayed fertility, endometriosis -associated lifetime \nsymptoms, diagnostic delay, treatments, and having \nhysterectomy because of endometriosis . The online \nweb-based survey was designed as 'survey-  open', \nwhich means there was no need to log in to complet e \nthe questionnaire, making it anonymous . Respondents \nwere able to go back to the previous completed pages \nand review or edit their responses. Questions on the \nphysical, psychosocial, and lifestyle dimensions were \nmandatory, while remaining dimensions were optional, \nand there was also the option of \"Not applicable\" if the \nquestion or non- mandatory dimensions were not \nrelevant to the respondents.  \nThe target group in this survey was women with \nself-reported diagnosis of endometriosis and ability to \nunderstand English, from secondary or tertiary care \nlevels as well as from the general community, with an \nemphasis on those residing in Australia. However, it \nhad been predicted that patients with endometriosis \nfrom outside Australia might also complete the \nquestionnaire as the questionnaire went online. For this \nreason, questions relating to the current location and \ncountry of origin were included in the demographic \nquestions.  \n To recruit a sufficiently large number of accessible \nparticipants, convenience sampling  and snowball \nsampling of women meeting the inclusion criteria were \nused. The invitation email stated that \"If you know any \nwomen with endometriosis who might like to \nparticipate in this study, please help us by sending this \nemail to them.\"  \nThe study subj ects were all 903 participants who \ncompleted the online questionnaire of a larger study \n\n481 Endometriosis-associated Symptoms and Diagnostic Delay \n      Volume 7, November – December 2022       Journal of Obstetrics, Gynecology and Cancer Research \nrelated to the development of Endometriosis Impact \nQuestionnaire (EIQ)  consisting 642 Australian (born in \nAustralia) and 261 non- Australian (not born in \nAustralia) women with confirmed endometriosis.  \nRecruitment began in October 2013 by sending an \ninvitation email with an embedded link to the online \nquestionnaire and an information form to 40 email \naddresses obtained from the dedicated Canberra \nEndometriosis Centre based at the Canberra hospital, \nAustralia, to test technical functionality of the online \nquestionnaire and flow of questions. From the \nresponses received, questions and answers were \nassessed to ensure that everything was satisfactory, and \nthereafter the online questionnaire was released widely \nto the public.  \nThe first page of the online survey included a brief \ninformation form including the aim of the study, and \nthe estimated length of time to complete the \nquestionnaire, and it was stated that \"Completing this  \nquestionnaire is voluntary\". The online survey was an \nanonymous web-based survey, and could be completed \nwithout being logged in.  \nMany groups/organizations and people were asked \nto assist with disseminating the study link through \ndifferent strategies. Th ese strategies included \ndissemination to a range of local -to-national \ngovernmental and private health facilities and \nspecialized women's health services, and leading \nendometriosis and women's health organizations.  \nAll data were entered into and analyzed using the \nStata software (version 14.1). Data were reported by \ndescriptive statistics including means, standard \ndeviations (SD), proportions, and ranges. Data were \nalso analyzed using Mann -Whitney U test, Chi-square \ntest, and Fisher's exact test. A probabi lity value of P< \n0.05 was considered as statistically significant. \n \nResults \nDemographic and clinical characteristics of \nparticipants are provided in Table 1. \nResponse rate was not calculated in the current study \nas it was not technically available through the used \nPolling Online system. Most items were compulsory in \nthis online survey and submission was possible only by \ncompleting all pages, so there were no missing data in \nthis survey. \nOf the 903 participants, 71.10% (n=642) w ere born \nin Australia and 28.90% (n=261) were born outside \nAustralia, in countries including the USA (82), the UK \n(29), New Zealand (34), England (21), Ireland (17), \nCanada (14), Scotland (7), Republic of South Africa \n(7), Scotland (7), Germany (5), Netherlands (3), Korea \n(3), Italy (3), Japan (2), Poland(3), Malaysia (2), \nIndonesia (2), Wales (1), Slovakia (1), Tanzania (1), \nGreece (1), Mexico (1), Nigeria (1), Chile (1), Slovenia \n(1), Trinidad (1), Singapore (1), Bulgaria (1), Barbados \n(1), Malaya (1), Namibia (1), Honduras (1), Philippines \n(1), Macedonia (1), South Switzerland (1), Sweden (1) \nand Norway (1).\n \nParticipants were aged 16 -68 years with self -\nreported confirmed diagnosis of endometriosis by \nsurgery (86.5%) and the rest had a provisional \ndiagnosis mostly based on ultrasound or symptoms. \nMean age at onset of the symptoms was 16.61± 5.7 \nyears, at first visit to doctor was 19.98± 7.2 years, and \nat diagnosis was 24.81±6.9 years, making a delay in \ndiagnosis of 8.1±6.2 years from the onset of symptoms. \nThe Australian and non-Australian participants were \nwithin the age ranges of 16 -66 (33.46±8.4) and 18- 68 \n(32.38±9.4) years, respectively,\n and there was no \nstatistically significant difference between the two \ngroups ( P=0.35) in this regard. The predominant \nlanguage in both groups was English ( P<0.001). In \naddition, 39.1% and 43.3% of Australian and non-\nAustralian patients were married, respectively. \nApproximately 30% and 34.5% of Australian and non-\nAustralian participants had tertiary education, \nrespectively. Additionally, 90.5% and 81.6% of \nAustralian and non-Australian women were employed, \nrespectively. There was no significant difference \nbetween the two groups in terms of full -time and part-\ntime employment, education level, retirement, and \nhome duties\n (P>0.05; Table 1). \nMean ages of Australian and non-Australian women \nat the onset of the first symptoms were 16.5±5.5 \n(within the age range of 9-46) and 16.9±6.3 (within the \nage range of 8 -42), respectively. There was no \nstatistically significant difference between the two \ngroups in this regard ( P=0.93). The mean age of \nAustralian and non -Australian women at the time of \ndiagnosis of symptoms were 24.4±6.9 (within the age \nrange of 12 -46) with a delay of 7.9±6.3 years and \n25.6±7.1 (within the age range of 14 -48) with a delay \nof 8.6±6, respectively. Although the Australian women \nwere diagnosed at a marginally younger age, the results \ndid not indicate a significant difference between the \ntwo groups (P=0.11; Figure 1\n). \n \n \n \n \n \n\nMaryam Moradi et al. 482 \n      Volume 7, November – December 2022       Journal of Obstetrics, Gynecology and Cancer Research \n \nFigure 1.  Age at onset of endometriosis -associated symptoms, first visit to doctor and diagnosis; delay in diagnosis in \nparticipants (all participants (n=903), Australian (n=642) and Non-Australian participants (n=261)) \nP-valuea: Mann-Whitney \n \n \n Participants with delayed fertility, never pregnant, \nmiscarriage or stillbirth, and hysterectomy because of \nendometriosis were respectively 37.1%, 54.8%, 13.4%, \nand 9.6%. \nFurthermore, 54.4% of Australian and 55.9% of non-\nAustralian participants had never been pregnant. In \naddition, 37.5% and 36.0% of Australian and non-\nAustralian women with endometriosis were infertile, \nrespectively.\n \nAbout 13% of people in both groups had a history of \nmiscarriage and stillbirth and more than 30% of them \nhad a history of infertility. Prevalence of hysterectomy \ndue to endometriosis was not significantly different \nbetween the two groups (P>0.05; Table 1\n). \n \n \nTable 1. Demographic and clinical characteristics of participants (All participants (n=903), Australian (n=642) and Non-\nAustralian participants (n=261)) \nRange =16-66, mean=33.46±8.4 \n16-24 N(%) 135(21) \n25-34 N(%) 372(45.5) \n35and above years N(%) 135(33.5) \n642(71) Australia \nAge groups \nRange=18-68, mean=32.38±9.4 \n16-24 N(%) 44(16.9) \n25-34 N(%) 103(39.4) \n35and above years N(%) 114(43.7) \n261(28.9) Non-Australian \nP-value Non-Australian \nN (%) \nAustralian \nN (%) \nTotal \nparticipants  \nΧ2=34.65 \nP-valueb*<0.001 \n244(93.5) 640(99.7) 884(97.8) English Language spoken \nat home 17(6.5) 2(0.3) 19(2.1) Non- English \nΧ2=2.24 \nP-valueb =0.81 \n81(31.0) 215(33.5) 296(32.7) In a relationship \nMarital status \n113(43.3) 251(39.1) 364(40.3) Married \n26(10.0) 63(9.8) 89(9.8) Never married \n12(4.6) 32(5.0) 44(4.8) Separated/Divorced \n29(11.1) 79(12.3) 108(11.9) Single \n0(0.0) 2(0.3) 2(0.2) Widow \n16.6\n19.9\n24.8\n8.1\n0.93a\n16.5\n0.24a\n19.8\n0.04a\n24.4\n0.11a\n7.9\n16.9\n20.2\n25.6\n8.6\n0\n5\n10\n15\n20\n25\n30\nAge at onset of symptoms Age at first visit to doctor Age at diagnosis Delay in diagnosis\nAll Participants\n Australian\n Non-Australian\n\n483 Endometriosis-associated Symptoms and Diagnostic Delay \n      Volume 7, November – December 2022       Journal of Obstetrics, Gynecology and Cancer Research \nP-value Non-Australian \nN (%) \nAustralian \nN (%) \nTotal \nparticipants  \nΧ2=55.91 \nvalueb*<0.000 \n10(3.8) 16(2/5) 26(2.9) \nPrimary school or \nhigh school without \ncertificate/completion \nHighest \neducational level \n13(5) 35(5.5) 48(5.3) \nlower secondary \nschool (up to age 16 \nyears, year 10 \ncertificate) \n28(10.7) 86(13.4) 114(12.6) \nUpper secondary \nschool (up to age \n17/18years, year 12 \ncertificate) \n16(6.1) 134(20.9) 150(16.6) \nVocational (e.g. \nTAFE, \napprenticeship) \n48(18.4) 58(9) 106(11.7) \nSome \ncollege/university, \ndid not graduate \n90(34.5) 193(30.1) 283(31.3) \nTertiary education: \nundergraduate (e.g. \nBachelor's degree) \n36(13.8) 105(16.4) 141(15.6) \nTertiary education: \npostgraduate (e.g. \nMaster's or PhD \ndegree) \n20(7.7) 15(23) 35(3.9) Other \nEmployment status \nΧ2=13.81 \nvalueb*<0.001 \n213(81.6) 581(90.5) 794(71) no \nNot employed \n48(18.4) 61(9.5) 109(12) yes \nΧ2=0.01 \nP-valueb =0.91 \n151(57.9) 369(57.5) 520(57.5) no Paid work, full \ntime 110(42.1) 273(42.5) 383(42.4) yes \nΧ2=7.33 \nvalueb*=0.007 \n209(80.1) 458(71.3) 667(73.8) no Paid work, part \ntime \n52(19.9) 184(28.7) 236(26.1) yes \nΧ2=0.21 \nP-valueb =0.64 \n237(90.8) 589(91.70) 826(91.4) no \nStudent, full time \n24(9.2) 53(8.3) 77(8.5) yes \nΧ2=2.25 \nP-valueb =0.13 \n250(95.8) 598(93.1) 848(93.9) no \nStudent, part time \n11(4.2) 44(6.9) 55(6) yes \nfisher=0.73 \nP-valuec =0.68 \n260(99.6) 636(99.1) 896(99.2) no \nRetired \n1(0.4) 6(0.9) 7(0.7) yes \nΧ2=0.92 \nP-valueb =0.33 \n224(85.8) 566(88.2) 790(87.4) no \nHome duties \n37(14.2) 76(11.8) 113(12.5) yes \nΧ2=0.08 \nP-valueb =0.77 \n237(90.8) 579(90.2) 816(90.3) no \nOther \n24(9.2) 63(9.8) 87(9.6) yes \n \nSelf-reported diagnosis of endometriosis was \nconfirmed by surgery in 86.5% of participants, \nincluding 87.9% of Australians and 83.1% of non -\nAustralians, and no significant difference was observed \nbetween the two groups (P=0.06). Australians (48.6%) \nand non -Australians (64.2%) were referred to the \nemergency department at least once for endometriosis \nsymptoms and there was a statistically significant \ndifference between the two groups in this regard \n(P<0.001). \nEndometriosis-related symptoms that Australian \nparticipants experienced in their lifetime were period \npain 98.6% (n=633), fatigue 93.5% (n=600), bloating \n89.7%(n=576), ovulation pain 88.3% (n=567), heavy \nbleeding 82.6% (n=530), pelvic pain 81.6%(n=553), \n\nMaryam Moradi et al. 484 \n      Volume 7, November – December 2022       Journal of Obstetrics, Gynecology and Cancer Research \npain during/before/after sexual activity 81.6% (n=524), \nirregular bleeding 64.6% (n=415), dela yed fertility \n38.2% (n=245), and other 22.3% (n=143). For the Non- \nAustralian participants symptoms were period pain \n96.9% (n=253), fatigue 95.4% (n=249), bloating \n93.1% (n=243), pelvic pain 90% (n=235), ovulation \npain 89.7% (n=234), pain during/before/aft er sexual \nactivity 85.4% (n=223), heavy bleeding 81.2% \n(n=212), irregular bleeding 66.3% (n=173), delayed \nfertility 37.5% (n=98), and other 21.5% (n=56). The \nprevalence of symptoms had no significant difference \nbetween the two groups (P>0.05) (Figure 2\n). \n \n \n \nFigure 2.  Lifetime endometriosis related symptoms in participants  in percentage (all participants (n=903), Australian \n(n=642) and Non-Australian participants (n=261)) \nP-valuea: Chi-square  \nExact percentage of lifetime endometriosis related symptoms in  All participants, Australian and Non -Australian participants: Period pain \n(98.11%, 98.6%, 96.9%), Fatigue(94.01%, 93.5%, 95.4%), Bloating (90.69%, 89.7%, 93.1%), Ovulation pain/mid -cycle pain (88.70%, 88.3%, \n89.7%), Pelvic pain not related to period pain (87.26%, 81.6%, 90%), Pain during/after sexual activity (82.72%, 81.6%, 85.4%), Heavy bleeding \n(82.17%, 82.6%, 81.2%), Irregular bleeding (65.11%, 64.6%, 66.3%), Delayed fertility (37.98%, 38.2%, 37.5%), and Oth er (22.03%, 22.3%, \n25.45%). \n \nLifetime treatments used for endometriosis by \nAustralian participants included: Pain killers 96.4% \n(n=619), surgical treatments 84.9%(n=545), hormonal \nmedication 84.1% (n=540), complementary treatments \n48.8% (n=313), hormonal IUD 39.4% (n=253), \npsychologist 27.1%(n=174), nutritionist 22.3% \n(n=143), physiotherapist 18.2% (n=117), sexual \ntherapist 2.8% (n=18) and other 10.3% (n=66). For the \nNon- Australian participants, lifetime treatments used \nwere Pain k illers 95% (n=248), hormonal medication \n86.2% (n=225), surgical treatments 83.5% (n=218), \ncomplementary treatments 37.9% (n=99), hormonal \nIUD 33% (n=86), psychologist 21.5%(n=56), \nnutritionist 20.3% (n=53), physiotherapist 11.1% \n(n=29), sexual therapist 1. 9% (n=5) and other 14.9% \n(n=39). \nThere was no difference between the two groups in \nterms of the consumption of analgesics, hormone \nmedications, and surgical treatments ( P>0.05). \nHowever, the use of complementary treatments \n(P=0.003) and referral to a physi otherapist (P=0.008) \nwas significantly higher in Australian women (\nFigure \n3). \n \n \n0.1a 0.28a\n0.12a 0.56a\n0.11a 0.16a\n0.63a\n0.63a\n0.86a\n0.78a\n0\n20\n40\n60\n80\n100\n120\nPeriod pain\nFatigue\nBloating\novulation pain\nPelvic pain not  related to period\npain\nPain during /after sexual activity\nHeavy bleeding\nIrregular bleeding\nDelayed fertility\nother\nAll Participants\n Australian\n Non-Australian\n\n485 Endometriosis-associated Symptoms and Diagnostic Delay \n      Volume 7, November – December 2022       Journal of Obstetrics, Gynecology and Cancer Research \n \nFigure 3. Lifetime treatments used for endometriosis in participants in percentage (all participants (n=903), Australian \n(n=642) and Non-Australian participants (n=261)) \nP-valuea: Chi-square test  \n \nDiscussion \nThe present study aimed to determine endometriosis-\nassociated symptoms and diagnostic delay through an \nonline survey. \nThe mean age of Australian an d non -Australian \nparticipants and mean diagnostic delay were not \nsignificantly different between the two groups. Reid et \nal. (15) identified that women self-reporting a diagnosis \nof endometriosis mostly were between 40– 49 years of \nage, with a higher proportion living in South Australia \n(18.2%). In a study by Bernuit et al. (21) the prevalence \nof the different diagnoses was comparabl e in eight \ncountries (Brazil, Canada, France, Germany, Italy, \nSouth Korea, UK, and the USA). The mean age at \ndiagnosis was 28 years, and the estimated time to \ndiagnosis was 6.1 years (21). This rate is close to that \nfound in previous studies, which have identified delays \nof 6.7±6.3 years in a cross of ten-country study (12). In \na study by Khong et al.  (2010) mean age of the \nrespondents was 34.6±7.6 years, and the average time \nfrom onset of symptoms to the first consultation was 9.8 \nyears. However, the average time from symptom onset \nto the first diagnosis of endometriosis was 4.5 years (22). \nIn a study by Hudelist  et al.  (23) in Austria and \nGermany with 171 participants, the mean age at the \ntime of diagnosis was 32±6 years. The diagnostic delay \nfor women wit h pelvic pain was 10.5 years and 9.8 \nyears for patients with subfertility (23). This period lies \nabove the upper range in European countries, reporting \na median delay time of 8 years in the UK and Spain \n(12, 22- 24), 6.7 years in Norway (24)  8.9 years in \nPuerto Rico (8)  7–10 years in Italy and 4 – 5 years in \nIreland and Belgium (12) . The mean age and delay in \ndiagnosis in the above studies are similar to the present \nstudy, thus confirms patients with endometriosis \nendure symptoms for years without being diagnosed. \nFatigue is an underestimated symptom of \nendometriosis, yet it affects most women with \nendometriosis. Fatigue can cause major distress, \nimpacting the daily activities and quality of life of \nwomen with endometriosis. A multicenter cross-\nsectional study of women with endometriosis in \nSwitzerland, Germany, and Austria found that they \nsuffered significantly from chronic pain and fatigue (25).  \nSymptoms such as dysmenorrhea, fatigue, pelvic \npain, dyspareunia, and heavy bleeding were more \ncommon in Australia n women with endometriosis. \nNevertheless, these symptoms were also reported by \nmost non -Australian respondents, and there was no \nstatistically significant difference between the two \ngroups. The results of a study by Kuohung et al. (13) \nconcluded the many s imilarities in demographics, \nsymptoms, and behaviors among women with \nendometriosis in the US and the UK support the \nuniversality of the disease process (13) . Similarly, in \nthe present study between both groups of Australian \nand non- Australian women, there  were slight \ndifferences in the frequency of endometriosis -\nassociated symptoms, but those were not statistically \nsignificant. In contrast to the present study, Fourquet et \nal. (26) compared characteristics of women with \nendometriosis from the USA and Puert o Rico and \nshowed that endometriosis patients from two ethnically \nand geographically dissimilar populations vary in their \nreporting of symptoms associated with endometriosis \nand co-morbid conditions, and concluded that clinical \nscenarios and history differ , likely due to genetics, \naccess to care, cultural issues, and years dealing with \nthe symptoms. \nMedical and surgical approaches are dominated in \ntreating endometriosis; however, there are some non -\n0.33a\n0.42a 0.6a\n0.003*a\n0.06 a\n0.07a\n0.51a\n0.008*a\n0.04a\n0.44a\n0\n20\n40\n60\n80\n100\n120\nPain killers\nHormonal medication\nSurgical treatments\nComplementary treatments\nHormonal IUD\nPsychologist\nNutritionist\nphysiotherapist\nother\nsexual therapist\nAll Participants\n Australian\n Non-Australian\n\nMaryam Moradi et al. 486 \n      Volume 7, November – December 2022       Journal of Obstetrics, Gynecology and Cancer Research \npharmacological therapies, including complementary \nand alte rnative medicine (27). In the present study, \nanalgesia, hormone therapy, and surgery were among \nthe majority of treatment modalities reported by \npatients, but no statistically significant difference \nbetween Australian and non -Australian women was \nfound. Long-term painkillers and hormone medication \nuse are risky due to the potential side effects and the \nhigh probability of recurrence (27).  \nIn a study by Schwartz et al. (25), 62.5% of women \nwith a confirmed diagnosis of endometriosis used some \nform of comple mentary health approaches/home \nremedies, and women suffering from fatigue often \nselected alternative therapies. In the present study, \n48.8% of Australian women had resorted to \ncomplementary medicine to relieve endometriosis -\nassociated symptoms, which was significantly higher \nthan Non- Australian participants.  \nIn the present study, more than 13% of women in \nboth groups had a history of abortion. Luteal phase \ninsufficiency combined with decreased estrogen and \nprogesterone levels decreased circulating estradi ol \nlevels during the pre -ovulatory phase. Endometrial \nchanges have been reported as causes of abortion in \nendometriosis patients. Based on the results of a \nsystematic review, in spontaneous pregnancies, \nendometriosis increases the risk of miscarriage by \nabout 80% (28). \nPrevious studies have indicated that 30 -50% of \nwomen with endometriosis are infertile. Ovarian \ninvolvement, adhesions, and decreased mobility of the \nfallopian tubes can lead to reduced fertility. Several \nmechanisms have been suggested, includ ing ovulatory \ndysfunction, luteal phase defect, luteinized unruptured \nfollicle syndrome, immunosuppression, and peritonitis \n(29). \n The history of delayed fertility among Australian \nand non -Australian participants in the present study \nwas consistent with th e infertility rate among \nendometriosis patients reported in the USA (19).  \n \nLimitations of this Study \nThere are some limitations in the present study, \nwhich decrease the ability to generalize the results. \nLimitations related to self -reporting and recall errors \nmay apply. A web-based survey was used in the current \nstudy; therefore, the generalizability of the results is \nlimited to those who are keyboard and Internet literate. \nThe online EIQ was designed as 'survey-  open'. This \nmeans there was no need to lo g in to complete the \nquestionnaire, making it anonymous. Van Gelder et al. \n(30) point out that calculating a response rate is \ndifficult in that case, and multiple completions from \none participant cannot be prevented. However, some \nstrategies, such as recor ding Internet protocol \naddresses and personal data, may detect multiple \nsubmissions (30). Data were assessed for duplication in \nthis study based on demographics during data cleaning, \nand no duplications were found. Dissemination of the \nstudy link was focused inside Australia, and 71.10% of \nresponders to the online survey were born in Australia. \nTherefore, the applicability to Australian women with \ndifferent characteristics to the participants and non -\nAustralians might be limited. In addition, it is not clear \nwhether some of the respondents from outside \nAustralia were actually Australians living in another \ncountry then this is a limitation. Finally, this study did \nnot collect clinical information such as the severity of \nendometriosis lesions or the existence of comorbidities \nthat could also contribute to symptoms. It is \nacknowledged that not knowing these clinical \ncharacteristics of the sample could limit the \ngeneralizability of the findings. \n \nConclusion \nSimilarities in demographics and endometriosis -\nassociated symptoms among the Australian and non -\nAustralian women with endometriosis were identified, \nwhich supports the universality of the disease \ncharacteristics. Delay in diagnosis of endometriosis is \na problem, and the reasons for delayed diagnosis must \nbe bet ter understood to try to shorten this delay and \nimprove the quality of their lives. Except for pain, \nendometriosis patients suffer from various symptoms, \nand treatment must take into account the most \nprominent symptoms.  \n \nAcknowledgments \nThis research, including the design of the study and \ndata collection, has been supported by the Australian \nNational University (ANU), School of Medicine within \na Ph.D. candidature \nAn online questionnaire including the demographic \nand medical questions was created using the Australian \nNational University Polling Online system called \n'APOLLO' (Link: \nhttps://apollo.anu.edu.au/default.asp?pid=7700). \n \nAvailability of Data and Materials \n The datasets generated and analyzed during the \ncurrent study will be available from the corres ponding \nauthor on reasonable request. \n \nEthics Approval and Consent to Participate \nApprovals were obtained from the ACT Health \nHuman Research Ethics Committee (ETH.6.13.155), \nand the ANU Human Research Ethics Committee. The \nonline survey's first page stated, \"By completing the \nquestionnaire, you are indicating your consent to \nparticipate in the study\". \n \nConflict of Interest \nThe authors declared no competing interests.\n\n487 Endometriosis-associated Symptoms and Diagnostic Delay \n      Volume 7, November – December 2022       Journal of Obstetrics, Gynecology and Cancer Research \nReferences \n \n1. Burkman RT. Berek & Novak's Gynecology. \nJAMA. 2012;308(5):516-7.  \n[DOI:10.1001/jama.308.5.516] \n2. hospitalizations AEiApa. 2019 [Available from: \nhttps://wwwaihwgovau/getmedia/a4ba101d-\ncd6d-4567-a44f-f825047187b8/aihw-phe-\n247pdfaspx?inline=true. \n3. Bulletti C, Coccia M. Battistoni S, Borini A. \nEndometriosis and infertility. J Assist Reprod \nGenet. 2010;27(8):441-7. [\nDOI:10.1007/s10815-\n010-9436-1] [PMID] [PMCID] \n4. Meuleman C, Vandenabeele B, Fieuws S, \nSpiessens C, Timmerman D, D'Hooghe T. High \nprevalence of endometriosis in infertile women \nwith normal ovulation and normospermic \npartners. Fertil Steril. 2009;92(1):68-74.  \n[DOI:10.1016/j.fertnstert.2008.04.056] [PMID\n] \n5. Laganà AS, La Ro sa VL, Rapisarda AMC, \nValenti G, Sapia F, Chiofalo B, et al. Anxiety and \ndepression in patients with endometriosis: impact \nand management challenges. Int J Women's \nHealth. 2017;9:323. [\nDOI:10.2147/IJWH-\n.S119729] [PMID] [PMCID] \n6. Friedl F, Riedl D, Fessler S, Wildt L, Walter M, \nRichter R, et al. Impact of endometriosis on \nquality of life, anxiety, and depression: an \nAustrian perspective. Arch Gynecol Obstet. \n2015;292(6):1393-9. [\nDOI:10.1007/s00404-015-\n3789-8] [PMID] \n7. Matasariu RD, Mihaila A, Iacob M, Dumitrascu \nI, Onofriescu M, Tanasa IC, et al. Psycho -social \naspects of quality of life in women with \nendometriosis. Acta Endocrinol. 2017;13(3):334. \n[DOI:10.4183/aeb.2017.334] [PMID] [PMCID\n] \n8. Fourquet J, Gao X, Zavala D, Orengo JC, Abac S, \nRuiz A, et al. Patients' report on how \nendometriosis affects health, work, and daily life. \nFertil Steril. 2010;93(7):2424-8. [PMCID\n]  \n[DOI:10.1016/j.fertnstert.2009.09.017] [PMID]  \n9. Cicinelli E, Trojano G, Mastromauro M, \nVimercati A, Marinaccio M, Mitola PC, et al. \nHigher prevalence of chronic endometritis in \nwomen with endometriosis: a possible \netiopathogenetic link. Fertil Steril. 2017;108(2):  \n289-95. [ DOI:10.1016/j.fertnstert.2017.05.016\n] \n[PMID] \n10. Vercellini P, Trespidi L, De Giorgi O, Cortesi I, \nParazzini F, Crosignani PG. Endometriosis and \npelvic pain: relation to disease stage and \nlocalization. Fertility and sterility. 1996;65(2):  \n299-304.[DOI:10.1016/S0015-0282(16)58089-3\n] \n11. Hadfield R, Mardon H, Barlow D, Kennedy S. \nDelay in the diagnosis of endometriosis: a survey \nof wome n from the USA and the UK. Hum \nReprod. 1996;11(4):878- 80. [ DOI:10.1093-\n/oxfordjournals.humrep.a019270] [PMID] \n12. Nnoaham KE, Hummelshoj L Fau - Webster P, \nWebster P Fau - d'Hooghe T, d'Hooghe T Fau - \nde Cicco Nardone F, de Cicco Nardone F Fau - de \nCicco Nardone C, de Cicco Nardone C Fau - \nJenkinson C, et al. Impact of endometriosis on \nquality of life and work  productivity: a \nmulticenter study across ten countries. Fertil \nSteril. 2011;96(2):336- 73. [\nDOI:10.1016-\n/j.fertnstert.2011.05.090] [PMID] [PMCID] \n13. Kuohung W, Jones GL, Vitonis AF, Cramer DW, \nKennedy SH, Thomas D, et al. Characteristics of \npatients with endometriosis in the United States \nand the United Kingdom. Fertility and sterility. \n2002;78(4):767-72. [\nDOI:10.1016/S0015-\n0282(02)03342-3] \n14. Ballweg ML. Impact of endometriosis on \nwomen's health: comparative historical data show \nthat the earlier the onset, the more severe the \ndisease. Best Pract Res Clin Obstet Gynaecol. \n2004;18(2):201-18. \n[DOI:10.1016/j.bpobgyn.2004.01.003] [PMID\n] \n15. Reid R, Steel A, Wardle J, McIntyre E, Harnett J, \nFoley H, et al. The prevalence of self -reported \ndiagnosed endometriosis in the Australian \npopulation: results from a nationally -\nrepresentative survey. BMC Res Notes. 2019;12  \n(1):1-6. [DOI:10.1186/s13104-019-4114-6\n]  \n[PMID] [PMCID] \n16. Cox H, Ski CF, Wood R, Sheahan M. \nEndometriosis, an unknown entity: the \nconsumer's perspective. Int J Consum Stud. 2003; \n27(3):200-9. [\nDOI:10.1046/j.1470-6431.2003.t01-\n1-00302.x] \n17. Fuldeore MJ, Soliman AM. Prevalence and \nsymptomatic burden of diagnosed endometriosis \nin the United States: national estimates from  a \ncross-sectional survey of 59,411 women. Gynecol \nObstet Invest. 2017;82(5):453-61.  \n[DOI:10.1159/000452660] [PMID\n] \n18. Apostolopoulos NV, Alexandraki KI, Gorry A, \nCoker A. Association between chronic pelvic \npain symptoms and the presence of \nendometriosis. Arch Gynecol Obstet. 2016;293  \n(2):439-45. [ DOI:10.1007/s00404-015-3855-2\n] \n[PMID] \n19. Eysenbach G. Improving the quality of Web \nsurveys: the Checklist for Reporting Results of \nInternet E-Surveys (CHERRIES). J Med Internet \nRes. 2004;6(3):e132. [DOI:10.2196/jmir.6.3.e34\n] \n[PMID] [PMCID] \n\nMaryam Moradi et al. 488 \n      Volume 7, November – December 2022       Journal of Obstetrics, Gynecology and Cancer Research \n20. Moradi M, Parker M, Sneddon A, Lopez V, \nEllwood D. The Endometriosis Impact \nQuestionnaire (EIQ): a tool to measure the long -\nterm impact of endometriosis on different aspects \nof women's lives. BMC Women's Health. \n2019;19(1):1-11. [\nDOI:10.1186/s12905-019-\n0762-x] [PMID] [PMCID] \n21. Bernuit D, Ebert AD, Halis G, Strothmann A, \nGerlinger C, Geppert K, et al. Female \nperspectives on endometriosis: findings from the \nuterine bleeding and pain women's research \nstudy. J Endometr. 2011;3(2):73-85.  \n[DOI:10.5301/JE.2011.8525\n] \n22. Khong S-Y, Lam A, Luscombe G. Is the 30 -item \nEndometriosis Health Profile (EHP -30) suitable \nas a self -report health status instrument for \nclinical trials? Fertil Steril. 2010;94(5):1928 -32. \n[DOI:10.1016/j.fertnstert.2010.01.047] [PMID] \n23. Hudelist G, Fritzer N, Thomas A, Niehues C, \nOppelt P, Haas D, et al. Diagnostic delay for \nendometriosis in Austria and Germany: causes \nand possible consequences. Hum Reproduc. \n2012;27(12):3412-6. \n[DOI:10.1093/humrep/des316] [PMID\n] \n24. Ballard K, Lowton K, Wright J. What's the delay? \nA qualitative study of women's experiences of \nreaching a diagnosis of endometriosis. Fertil \nSteril. 2006;86(5):1296-301.  \n[DOI:10.1016/j.fertnstert.2006.04.054] [PMID\n] \n25. Schwartz ASK, Gross E, Geraedts  K, Rauchfuss \nM, Wölfler MM, Häberlin F, et al. The use of \nhome remedies and complementary health \napproaches in endometriosis. Reprod Biomed \nOnline. 2019;38(2):260-71.  \n[DOI:10.1016/j.rbmo.2018.10.009] [PMID\n] \n26. Fourquet J, Sinaii N, Stratton P, Khayel F, \nAlvarez-Garriga C, Bayona M, et al. \nCharacteristics of Women with Endometriosis \nfrom the USA and Puerto Rico. J Endometr Pelvic \nPain Disord. 2015;7(4):129-35.  \n[DOI:10.5301/je.5000224] [PMID] [PMCID] \n27. Marqui ABTd. Non-pharmacological approach to \npain in endometr iosis. Revista Dor. 2014;15: \n3003. [DOI:10.5935/1806-0013.20140065] \n28. Minebois H, De Souza A, Mezan de Malartic C, \nAgopiantz M, Guillet May F, Morel O, et al. \nEndométriose et fausse couche spontanée. Méta-\nanalyse et revue systématique de la littérature. \nGynecol Obstetr Fertil Senol. 2017;45(7):393- 9. \n[DOI:10.1016/j.gofs.2017.06.003] [PMID\n] \n29. Boujenah J, Salakos E, Pinto M, Shore J, Sifer C, \nPoncelet C, et al. Endometriosis and uterine \nmalformations: infertility may increase severity \nof endometriosis. Acta Obstet Gynecol Scand. \n2017;96(6):702-6. [ DOI:10.1111/aogs.13040\n] \n[PMID] \n30. Van Gelder MMHJ, Bretveld RW, Roeleveld N. \nWeb-based Questionnaires: The Future in \nEpidemiology? Am J Epidemiol. 2010;172- (11): \n1292-8. [DOI:10.1093/aje/kwq291]  [ PMID\n] \n \nHow to Cite This Article:  \n \nMoradi M, Niazi A, Parker M, Sneddon A, Lopez V, Ellwood D. Endometriosis -associated Symptoms and \nDiagnostic Delay: An Online Survey. J Obstet Gynecol Cancer Res. 2022; 7(6):479-88. \nDownload citation:  \nBibTeX | RIS | EndNote | Medlars | ProCite | Reference Manager | RefWorks","source_license":"CC0","license_restricted":false}