Endometriosis-Associated Symptoms and Diagnostic Delay: An Online Survey

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However, data on diagnostic-delay and associated symptoms are limited. The aim of this study was to determine the endometriosis-associated symptoms and diagnosis-delay through an online survey. Methods : A cross-sectional study was conducted in Australia using an online web-based survey. All data were entered and analyzed using STATA (version 14/1). A total of 903 responders completed an online survey from September 2013 to October 2015. Results: Total participants of 903, 71.10% Australians (were born in Australia) and 28.90% Non-Australian (were not born in Australia), with self-reported diagnosis of endometriosis was confirmed by surgery in 86.5% of participants completed the online survey. Delay in diagnosis was 8.1±6.2 years. There was no difference between age range (p = 0.35), mean age of onset of the first symptoms (p = 0.93), and delay in diagnosis (p = 0.11) in both groups. Most common endometriosis-related symptoms that all responders had experienced in their lifetime were period pain 98.11%, fatigue 94.01%, bloating 90.69%, ovulation pain 88.70%, pelvic pain 87.26%, pain during before/after sexual activity 82.72% and heavy bleeding 82.17% and delayed fertility 37.98%. Treatments used in affected women included: pain killers 96.01% (n=867), hormonal medication 84.71% and surgical treatments 84.49 %. Rate of miscarriage or stillbirth was 13.4% and hysterectomy because of endometriosis was 9.6%. Conclusions : Vast similarities in demographics and endometriosis-associated symptoms among the Australian and non-Australian women with endometriosis support the universality of the disease characteristics. Delay in diagnosis of endometriosis is a problem and the reasons for delayed diagnosis must be better understood to try to shorten this delay. Except for pain, endometriosis patients suffer from a variety of symptoms and treatment must take into account the most prominent symptoms. Internal Medicine Preventive Medicine Diagnosis Diagnostic delay Endometriosis Symptoms Figures Figure 1 Figure 2 Figure 3 Background Endometriosis is a debilitating gynecologic disease which uterine epithelial and stromal tissue is presented outside of the uterine cavity [1, 2] . It affects about 10-15% of women of reproductive age [3]. According to a longitudinal study in Australia, 1 in 9 women in which were born in 1973–78 were diagnosed by age 40–44 [4]. Women with endometriosis experience a variety of symptoms. Up to 80% of women with endometriosis suffer from chronic pain such as dysmenorrhea, dyspareunia, persistent pelvic pain, non-menstrual pelvic pain and dyschezia [5] and it is revealed that 47% of infertile women have endometriosis [6]. Previous research has found the negative effects of endometriosis are significant and extensive [3]. The physical and psychological impact of symptoms are often severe and unpredictable [7] , at a time in life when self-esteem, social involvement, school attendance, and performance are critical for this patient population, can lead to the development of serious emotional issues and cause long-term effects in their psychological well-being [8-11]. The basic epidemiology of endometriosis has been difficult to assess for many reasons [13], including that diagnosis can only be made definitively by direct visualization during invasive laparoscopy or laparotomy and critically depends on the clinical expertise of the surgeon. Culturally, pain symptoms related to periods can be perceived by the women as a normal thing without seeking medical care [14, 15]. As a result, many affected women remain undiagnosed, a significant diagnostic delay of 11.7 ± 9.05 years was reported in the U.S.A., and 8.0 ± 7.92 years in the U.K. [16]. In a cross-sectional study conducted between 2008 to 2010 on women aged 18 to 45 years were recruited from 10 countries, of whom 745 were consequently diagnosed with endometriosis, diagnostic delay was 6.7 ± 6.3 years in affected women [17]. Studies have described the characteristics of women with endometriosis in two different populations, but only a few have investigated the demographics and symptomatology of endometriosis from different geographic regions or ethnicities. One study with similar patient demographics and characteristics in women with endometriosis in the U.S.A. and the U.K. reported significant differences including early age at diagnosis and less frequency of contraceptive use [18]. Ballweg et al., [19] reported that the delay between onset of symptoms and actual diagnosis of the disease of over 7020 women with confirmed endometriosis in the U.S.A. was 9.28 years [18]. Data from over 7000 confirmed endometriosis cases clearly show that delay in diagnosis (the average time to diagnosis is .9 years) is a major problem and that current treatments are far from satisfactory [19]. Reid et al., [20] through a cross-sectional survey of Australian adults over 18 years, found that prevalence of self-reported diagnosed endometriosis in the Australian women of reproductive age (18-49 years) was 3.4% (22 out of 652) [20], which aligns with previous Australian research on this topic, however, the prevalence rate from this data set was lower than the estimated prevalence from the Global Burden of Disease Study. Lack of awareness about this condition and lack of communication contributing to delayed diagnosis of endometriosis [21]. With regards to endometriosis-associated symptoms, Fuldeore et al., [22] found that more had menstrual pelvic pain/cramping. Klein et al., [23] reported that dysmenorrhoea was the most common symptom in Belgian women but a study in the U.K. [24] showed that no difference in pain including dysmenorrhoea, dyspareunia, dyschezia was found between women with and without endometriosis. The profile of endometriosis as a chronic condition is needed to provide informed and accurate understanding of endometriosis by individuals, education and health professionals and the community more broadly. This will enable early recognition of symptoms, greater awareness of treatment options and understanding of the impact of the condition [22]. The aim of this study was to determine endometriosis-associated symptoms and diagnostic delay through an online survey Methods Data collection tool The Checklist for Reporting Results of Internet E-Surveys (CHERRIES) was followed to report this study [25]. A cross-sectional study was conducted using a self-report online survey in Australia. This article is part of a larger study related to the development and validation of the Endometriosis Impact Questionnaire (EIQ) [26] . An online questionnaire including the demographic and medical questions was created using the Australian National University Polling Online system called ‘APOLLO’(Link: https://apollo.anu.edu.au/default.asp?pid=7700 ). Demographic and medical information form (Appendix 1) designed by the main researcher through an extensive literature review, and revised and finalized by the research team, was used to collect data including demographics, diagnosis of endometriosis, educational level, employment condition, obstetrics history including history of pregnancy and having children, and history of delayed fertility, endometriosis-associated symptoms lifetime, diagnostic delay, treatments, and having hysterectomy because of endometriosis. LoBiondo-Wood & Haber (2010) noted that a unique method of accessing and recruiting subjects is the use of online computer networks [27]. The online web-based survey was designed as ‘survey- open’, which means there was no need to log in to complete the questionnaire, making it anonymous. Responders were able to come back to the previous completed pages and review or change their responses. Questions of the physical-psychosocial and lifestyle dimensions were mandatory, , remaining dimensions were not mandatory although there was the option of “Not applicable” if the question or non-mandatory dimensions were not relevant to responders. Sample and setting The target group in this survey was women with self-reported diagnosis of endometriosis and ability to understand English, from secondary or tertiary care levels as well as from the general community, with an emphasis on those residing in Australia. However, it had been predicted that endometriosis patients from outside Australia might complete the questionnaire as the questionnaire went online. For this reason, questions relating to current location and country of origin were included in the demographic questions. To recruit a sufficiently large number of accessible participants, convenience sampling and snowball sampling of women meeting the inclusion criteria were used. The invitation email stated that “If you know any women with endometriosis who might like to participate in this study, please help us by sending this email to them.” Sample size The sample included all 903 participants who completed the online questionnaire of a larger study related to development of the Endometriosis Impact Questionnaire (EIQ) consisting of 642 Australian (were born in Australia) and 261 Non-Australian (were not born in Australia) women with confirmed endometriosis. Pilot study Recruitment began in October 2013 by sending an invitation email with an embedded link to the online questionnaire and an information form to 40 email addresses obtained from the dedicated Endometriosis Centre in Canberra, Australia to test technical functionality of the online questionnaire ?and flow of questions. From the responses received, questions and answers were assessed to ensure that everything was satisfactory, and thereafter the online questionnaire was released widely to the public. Data collection procedures The first page of the online survey included a brief information form including aim of the study, estimated length of time to complete questionnaire, and it was stated that “Completing this questionnaire is voluntary. The online survey was an anonymous web-based survey, and could be completed without a log in. Many groups/organisations and people were asked to assist with disseminating the study link through different strategies. These included a range of local through to national government and private health facilities and specialized women’s health services; and leading endometriosis and women’s health organisations’. Inernational dissemination included Endometriosis New Zealand. Data analysis All data were entered and analyzed using Stata (version 14/1). Data were reported by descriptive statistics including means, standard deviations (SD), proportions, and ranges. Data were analyzed using Mann-whitney, chi-square test, Fisher’s exact test and a probability values of p< 0.05 were considered to be statistically significant. Results Demographic and clinical characteristics of participants are provided in Table 1 . Response rate was not calculated in the current study as it was not technically available through the used polling online system. Most items were compulsory in this online survey and submission was possible only by completing all pages, so there were no missing data in this survey. Of the 903 participants 71.10 % (n=642 ) of participants were born in Australia and 28.90% (n=261) were born outside Australia, in countries including the U.S.A. (82), U.K. (29), New Zealand(34), England(21), Ireland(17), Canada(14), Scotland(7), Republic of South Africa(7), Scotland)7), Germany(5), Netherlands(3), Korea(3), Italy(3), Japan(2), Poland(2), Malaysia(2), Indonesia(2), Wales(1), Slovakia(1), Tanzania(1),Greece(1), Mexico(1), Nigeria(1), Chile(1), Slovenia(1), Trinidad(1), Singapore(1), Bulgaria(1), Barbados(1), Malaya(1), Namibia(1), Honduras(1), Philippines(1), Macedonia(1), South Switzerland(1), Poland(1), Sweden(1), Norway(1). Participants were aged 16-68 years with self-reported confirmed diagnosis of endometriosis by surgery (86.5%) and the rest had a provisional diagnosis mostly based on ultrasound or symptoms. Mean age at onset of symptoms was 16.61± 5.7 years, at first visit to doctor was 19.98± 7.2 years, and at diagnosis was 24.81±6.9 years, making a delay in diagnosis of 8.1±6.2 years from the onset of symptoms. The Australian and non-Australian participants were within the age ranges of 16-66 (33.46±8.4) and 18-68 (32.38±9.4) years respectively and there was no statistically significant difference between the two groups (P=0.35). The predominant language in both groups was English (P<0.001). In addition, 39.1% and 43.3% of Australian and non-Australian patients were married, respectively. Approximately 30% and 34.5% of Australian and non-Australian participants had tertiary education, respectively. Additionally, 90.5% and 81.6% of Australian and non-Australian women were employed, respectively. There was no significant difference between the two groups in terms of full-time employment, education level, and part-time and full-time occupation, retirement, and home duties (P>0.05) (Table 1). Mean ages of Australian and non-Australian women at the onset of the first symptoms were 16.5±5.5 (within the age range of 9-46) and 16.9±6.3 (within the age range of 8-42), respectively. There was no statistically significant difference between the two groups in this regard (P=0.93). Besides, the mean age of Australian and non-Australian women at the time of the diagnosis of symptoms were 24.4±6.9 (within the age range of 12-46) with a delay of 7.9±6.3 years and 25.6±7.1 (within the age range of 14-48) with a delay of 8.6±6, respectively. Although the Australian women were diagnosed at a marginally younger age, the results did not indicate a significant difference between the two groups (P=0.11) (Figure 1). Participants with delayed fertility was 37.1%, never pregnant 54.8 %, miscarriage or stillbirth 13.4% , hysterectomy because of endometriosis 9.6 %. Australians (54.4%) and non-Australian participants (55.9%) had never been pregnant, respectively. Furthermore, 37.5% and 36.0% of Australian and non-Australian women with endometriosis were infertile, respectively. About 13% of people in both groups had a history of miscarriage and stillbirth and more than 30% of them had a history of infertility. Prevalence of hysterectomy due to endometriosis was not significantly different between the two groups (P>0.05) (Table 1). Self-reported diagnosis of endometriosis was confirmed by surgery in 86.5% of participants including 87.9% of Australian and 83.1% of non-Australian; in which did not indicate a significant difference between the two groups (P=0.06). Australians (48.6%) and non-Australians (64.2%) were referred to the emergency department at least once due to endometriosis symptoms and here was a statistically significant difference between the two groups in this regard (P<0.001). Endometriosis-related symptoms that Australian participants experienced in their lifetime were period pain 98.6%(n=633), fatigue 93.5%(n=600), bloating 89.7%(n=576), ovulation pain 88.3%(n=567), heavy bleeding 82.6%(n=530), pelvic pain 81.6%(n=553), pain during/before/after sexual activity 81.6%(n=524), Heavy bleeding 82.6%, irregular bleeding 64.6% (n=415), delayed fertility 38.2% (n=245), and other 22.3% (n=143). For the Non- Australian participants symptoms were period pain 96.9%(n=253), fatigue 95.4%(n=249), bloating 93.1%(n=243), pelvic pain 90%(n=235), ovulation pain 89.7%(n=234), pain during/before/after sexual activity 85.4% (n=223), heavy bleeding 81.2% (n=212), irregular bleeding 66.3% (n=173), delayed fertility 37.5% (n=98), and other 25.45% (n=56). The prevalence of symptoms had no significant difference between the two groups (P>0.05) (Figure 2). Lifetime treatments used for endometriosis by Australian participants included: Pain killers 96.4% (n=619), surgical treatments 84.9% (n=545), hormonal medication 84.1% (n=540), complementary treatments 48.8% (n=313), hormonal IUD 39.4% (n=253), psychologist 27.1% (n=174), nutritionist 22.3% (n=143), physiotherapist 18.2% (n=117), sexual therapist 2.8% (n=18) and other 10.3% (n=66). For the Non- Australian participants, lifetime treatments used were Pain killers 95% (n=248), hormonal medication 86.2% (n=225), surgical treatments 83.5% (n=218), complementary treatments 37.9% (n=99), hormonal IUD 33% (n=86), psychologist 21.5% (n=56), nutritionist 20.3% (n=53), physiotherapist 11.1% (n=29), sexual therapist 1.9% (n=5) and other 14.9% (n=39). There was no difference between the two groups in terms of the consumption of analgesics, hormone medications, and surgical treatments (P>0.05). However, the use of complementary treatments (P=0.003) and referral to a physiotherapist (P=0.008) was significantly higher in Australian women (Figure 3). Discussion The present study aimed to determine the demographic characteristics and symptoms associated with endometriosis in Australian participants and compared them with those of non-Australian participants. Mean age of Australian and non-Australian participants and mean diagnostic delay were not significantly different between the two groups. Reid et al., [20] identified that women self-reporting a diagnosis of endometriosis, mostly were between 40–49 years of age, with a higher proportion living in South Australia (18.2%). In study Bernuit et al., (2011) prevalence of the different diagnoses was comparable between eight countries (Brazil, Canada, France, Germany, Italy, South Korea, U.K., and the U.S.A). Mean age at diagnosis was 28 years and estimated time to diagnosis was 6.1 years [28]. This rate is close to that found in previous studies, which have identified delays of 6.7±6.3 years in a cross of ten country study [17] . In a study by Khong et al., (2010) mean age of the respondents was 34.6±7.6 years, the average time since onset of symptoms to first consultation was 9.8 years, although the average time from symptom onset to first diagnosis of endometriosis was 4.5 years [29]. In a study by Hudelist et al., (2012) in Austria and Germany with 171 participants, the mean age at the time of diagnosis were 32±6 years. The diagnostic delay for women with pelvic pain was 10.5 years and 9.8 years for patients with subfertility [30]. This period lies above the upper range in European countries reporting a median delay time of 8 years in the U.K. and Spain[17, 29- 31] , 6.7 years in Norway [31] 8.9 years in Puerto Rico [12] 7–10 years in Italy and 4 –5 years in Ireland and Belgium [17]. The mean age and delay in diagnosis in the above studies is similar to the present study, thus confirms patients with endometriosis endure symptoms for years without being diagnosed. Pain is one of its predominant clinical symptom women with endometriosis experience, mostly dysmenorrhea, noncyclical pelvic pain, dyspareunia, and dyschezia [32]. Fatigue is an underestimated symptom of endometriosis yet it affects the majority of women with endometriosis. Fatigue can cause major distress impacting the daily activities and quality of life of women with endometriosis [33]. A multicentre cross-sectional study in women with endometriosis in Switzerland, Germany and Austria found that they suffered significantly from chronic pain and fatigue [34]. Symptoms, such as dysmenorrhea, fatigue, pelvic pain, dyspareunia, and heavy bleeding were more common in Australian women with endometriosis. Nevertheless, these symptoms were also reported by most non-Australian respondents and there was no statistically significant difference between the two groups. According to the results of a study by Kuohung et al., (2002), concluded the many similarities in demographics, symptoms, and behaviors among women with endometriosis in the U.S. and in the U.K. support the universality of the disease process [18]. Similarly in the present study between both groups of Australian and non-Australian women, there were slight differences in the frequency of endometriosis-associated symptoms but those were not statistically significant. In contrast to the present study, Fourquet et al., [35] compared characteristics of women with endometriosis from the U.S.A. and Puerto Rico, and showed that endometriosis patients from two ethnically and geographically dissimilar populations vary in their reporting of symptoms associated with endometriosis and co-morbid conditions, and concluded that clinical scenarios and history differ, likely due to genetics, access to care, cultural issues, and years dealing with the symptoms. To treat endometriosis, conventional of medical and surgical approaches are dominated, however there are some non-pharmacological therapies including complementary and alternative medicine [36, 37]. In the present study, analgesia, hormone therapy, and surgery were among the majority of treatment modalities reported by patients but no statistically significant difference between Australian and non-Australian women was found. Long-term use of painkillers and hormone medication is risky due to the potential side effects and the high probability of recurrence [37]. Surgery is also more invasive and expensive in comparison to other treatments, carries risk of complications, and may be effective only temporarily [38]. The complementary and alternative medical therapies for endometriosis and its mechanisms in the published literature mainly include herbal products, acupuncture, microwave physiotherapy, CHM enema, and psychological interventions [36]. Australian longitudinal cross-sectional survey reported a higher use of ‘vitamins/minerals’, ‘yoga/meditation’ or ‘acupuncture/TCM’ in women with endometriosis compared with non sufferers [39]. In a study by Schwartz et al., [34] 62.5% of women with confirmed diagnosis of endometriosis, used some form of complementary health approaches/home remedies and women suffering from fatigue often selected alternative therapies. In the present study, 48.8% of Australian women had resorted to complementary medicine to relieve endometriosis-associated symptoms and there was significantly higher than Non- Australian participants. In the present study, more than 13% of women in both groups had a history of abortion. Luteal phase insufficiency combined with decreased estrogen and progesterone levels, decreased circulating estradiol levels during the pre-ovulatory phase, and endometrial changes have been reported as causes of abortion in endometriosis patients. Based on the results of a systematic review, in spontaneous pregnancies, endometriosis increases the risk of miscarriage by about 80% [40]. Previous studies have indicated that 30-50% of women with endometriosis are infertile. Ovarian involvement, adhesions, and decreased mobility of the fallopian tubes can lead to reduced fertility. Several mechanisms have been suggested, including ovulatory dysfunction, luteal phase defect, luteinized unruptured follicle syndrome, immunosuppression, and peritonitis [41-42]. History of delayed fertility among Australian and non-Australian participants in the present study was consistent with the infertility rate among endometriosis patients reported in the U.S.A. [19]. Limitations of this study There are some limitations in the present study which decrease the ability to generalize the results. Limitations related to self-reporting and recall errors may apply. Web-based survey was used in the current study, therefore the generalizibility of the results is limited to those who are keyboard and Internet literate [43]. The online EIQ was designed as ‘survey- open’. This means there was no need to log in to complete the questionnaire, making it anonymous. Van Gelder et al., (2010) point out that in that case, calculating a response rate is difficult and multiple completions from one participant cannot be prevented, although some strategies, such as recording Internet protocol addresses and personal data, may detect multiple submissions [44]. In this study, during data cleaning, data were assessed for duplication based on demographics and no duplications were found. Dissemination of the study link was focused inside Australia and 71.10% of responders to the online survey were born in Australia. Therefore, the applicability to Australian women with different characteristics to the participants, and non-Australians might be limited. In addition, it is not clear whether some of the respondents from outside Australia were actually Australians living in another country then this is a limitation. Finally, this study did not collect clinical information such as the severity of endometriosis lesions or the existence of comorbidities that could also contribute to symptoms. It is acknowledged that not knowing these clinical characteristics of the sample could limit the generalizability of the findings. Conclusions Similarities in demographics and endometriosis-associated symptoms among the Australian and non-Australian women with endometriosis were identified, which supports the universality of the disease characteristics. Delay in diagnosis of endometriosis is a problem and reasons for delayed diagnosis must be better understood to try to shorten this delay and improve quality of their lives. Except for pain, endometriosis patients suffer from a variety of symptoms and treatment must take into account the most prominent symptoms. It is helpful to review appropriate corrective actions to reduce the time interval between the report of symptoms and confirmed diagnosis, consultation, and treatment. Declarations Ethics approval and consent to participate Approvals were obtained from the Australian Capital Territory (ACT) Health Human Research Ethics Committee (with code of ETH.6.13.155), and from the Survey Resource Group (SRG), and from the Australian National University (ANU) Human Research Ethics Committee and all methods were performed with the relevant guidelines and regulations. Informed consent was obtained from all subjects in which on first page of the online survey stated that “By completing the questionnaire you are indicating your consent to participate in the study”. Young people were capable of consenting in their own right as they were in the 16 - 18 year age group and considered capable of giving consent to their medical treatment. Consent for publication Not applicable. Availability of data and materials The datasets generated and analyzed during the current study will be available from the corresponding author on reasonable request. Competing interests The authors declare that they have no competing interests. Funding This research, including design of the study and data collection has been supported by the Australian National University (ANU), School of Medicine within a PhD candidature. Authors’ contributions MM, MP, AS, VL and DA jointly contributed to the study design, analysis and interpreting of data. MM and MP identified potential participants and recruited the participants. MM and MP developed the online questionnaire. MM, AN and VL completed analysis. MM, AZ and DE drafted the manuscript. MM, AN, MP, AS, VL and DE revised the manuscript critically and approved the final manuscript. Acknowledgements This article has been derived from a study pertaining to thesis submitted for the degree of Doctor of Philosophy at the Australian National University Medical School. We thank the participants for completing the questionnaire and helping us to make this study possible. We acknowledge the many organizations and people who helped this study by disseminating the online questionnaire link. References Ahn SH, Singh, V, Tayade, C. Biomarkers in endometriosis: challenges and opportunities. Fertility and sterility.2017: 107(3), 523-532.‏ Burkman RT. Berek & Novak’s gynecology. 2012; 308(5):516-7. Mao A & Anastasi J. Diagnosis and management of endometriosis: The role of the advanced practice nurse in primary care. Journal of the American Academy of Nurse Practitioners. 2010. 22(2), 109-116.‏ AIHW. 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Ramin-Wright A, Schwartz A, Geraedts K, Rauchfuss M, Wölfler M, Haeberlin F. Fatigue–a symptom in endometriosis. Human reproduction. 2018,33(8):1459-65. Schwartz A, Gross E, Geraedts K, Rauchfuss M, Wölfler MM, Häberlin F. The use of home remedies and complementary health approaches in endometriosis. Reproductive biomedicine online. 2019,38(2):260-71. Fourquet J, Sinaii N, Stratton P, Khayel F, Alvarez-Garriga C, Bayona M& Flores I. Characteristics of women with endometriosis from the USA and Puerto Rico. Journal of endometriosis and pelvic pain disorders. 2015. 7(4), 129-135.‏ Kong S, Zhang Y-H, Liu C-F, Tsui I. The complementary and alternative medicine for endometriosis: a review of utilization and mechanism. Evidence-Based Complementary and Alternative Medicine. 2014. Marqui A. Non-pharmacological approach to pain in endometriosis. Revista Dor. 2014:15(4), 300-303 Johnson NP, Hummelshoj L, Consortium W, Abrao M, Adamson G, Allaire C. Consensus on current management of endometriosis. Human reproduction.2013,28(6):1552-68. Fisher C , Adams J , Hickman L , Sibbritt D. The use of complementary and alternative medicine by 7427 Australian women with cyclic perimenstrual pain and discomfort: a cross-sectional study. BMC complementary and alternative medicine. 2016;16(1):129. Minebois H, De A, de Malartic Mezan C, Agopiantz M, Guillet FM. Endometriosis and miscarriage: Systematic review. Gynecologie, Obstetrique, Fertilite & Senologie. 2017:45 (7-8), 393-399. Macer ML, Taylor H. Endometriosis and infertility: a review of the pathogenesis and treatment of endometriosis-associated infertility. Obstetrics and Gynecology Clinics. 2012;39(4):535-49. Boujenah J, Salakos E, Pinto M, Shore J, Sifer C, Poncelet C. Endometriosis and uterine malformations: infertility may increase severity of endometriosis. Acta obstetricia et gynecologica Scandinavica. 2017,96(6):702-6. Peng Y-H, Liao W-C, Huang C-W, Hsu CY, Chen H-J. Asthma is associated with endometriosis: A retrospective population-based cohort study. Respiratory Medicine. 2017,132:112-6. Van Gelder M, Bretveld R. W & Roeleveld N. Web-based questionnaires: the future in epidemiology? Am J Epidemiol. 2010, 172(11), 1292-1298. Tables Due to technical limitations, table 1 is only available as a download in the Supplemental Files section. Supplementary Files Table11.docx Appendix1.pdf Appendix 1: Demographic and medical information form Appendix2.aaa.pdf Appendix 2: Flyers for the study Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-126422","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":6800807,"identity":"be0d5583-fbd2-4ca9-8409-34c61dbc8303","order_by":0,"name":"Maryam Moradi","email":"","orcid":"","institution":"Mashhad University of Medical Sciences","correspondingAuthor":false,"prefix":"","firstName":"Maryam","middleName":"","lastName":"Moradi","suffix":""},{"id":6800808,"identity":"40bd3ccc-119c-417e-881e-688efe7062ce","order_by":1,"name":"Azin Niazi","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA6UlEQVRIiWNgGAWjYFACxgYgIcHAwMx8/MMHBoYEUrSwpTHOIE4LHPCoMfMQo4W//3DbA8YdFvLy7Txsj23b7PL42RsYP3zMwa1F4sDBdgPGMxKGjc28x41z25KLJXsOMEvO3IbHmoONbRKMQNTMzJcgndvGnLjhRgIbMy8eLfKHGcFa7NuYeQykLdvqCWsxOAbRktjDzGMmzdh2mLAWwzMQLckzmNmSDXvOHU+c2XOwGa9f5M4ffwbUUmc7v//wwQc/yqoT+9mbD374iM/7QMD8B8ZiZAOTDfjVo4I/hJWMglEwCkbByAMAVylMDn0no5MAAAAASUVORK5CYII=","orcid":"","institution":"Mashhad University of Medical Sciences","correspondingAuthor":true,"prefix":"","firstName":"Azin","middleName":"","lastName":"Niazi","suffix":""},{"id":6800809,"identity":"8d3bec3f-3e01-4826-8abd-be73c1edfdec","order_by":2,"name":"Melissa Parker","email":"","orcid":"","institution":"Canberra Hospital","correspondingAuthor":false,"prefix":"","firstName":"Melissa","middleName":"","lastName":"Parker","suffix":""},{"id":6800810,"identity":"972d5c9a-0722-403a-b345-ca83bf15345c","order_by":3,"name":"Anne Sneddon","email":"","orcid":"","institution":"Griffith University","correspondingAuthor":false,"prefix":"","firstName":"Anne","middleName":"","lastName":"Sneddon","suffix":""},{"id":6800811,"identity":"bc1b1245-7b82-4287-b94e-34ee5b403078","order_by":4,"name":"Violeta Lopez","email":"","orcid":"","institution":"Hubei University of Chinese Medicine","correspondingAuthor":false,"prefix":"","firstName":"Violeta","middleName":"","lastName":"Lopez","suffix":""},{"id":6800812,"identity":"5cc03afb-6f9f-48c3-86eb-21deb73776c0","order_by":5,"name":"David Ellwood","email":"","orcid":"","institution":"Griffith University","correspondingAuthor":false,"prefix":"","firstName":"David","middleName":"","lastName":"Ellwood","suffix":""}],"badges":[],"createdAt":"2020-12-11 07:29:07","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-126422/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-126422/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":4477229,"identity":"190b6a62-02f3-4759-9b9c-d4cf9756bb45","added_by":"auto","created_at":"2020-12-23 16:21:43","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":56127,"visible":true,"origin":"","legend":"Age at onset of endometriosis-associated symptoms, first visit to doctor and diagnosis; delay in diagnosis in participants (all participants (n=903), Australian (n=642) and Non-Australian participants (n=261))\nPvaluea :mann-whitney.","description":"","filename":"Fig1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-126422/v1/9f5b76ccd7851597722c0f73.jpg"},{"id":4477227,"identity":"da957230-aa75-4b7f-9d01-8e6735d3ac8c","added_by":"auto","created_at":"2020-12-23 16:21:43","extension":"jpg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":83771,"visible":true,"origin":"","legend":"Lifetime endometriosis related symptoms in participants in percentage (all participants (n=903), Australian (n=642) and Non-Australian participants (n=261))\nPvaluea:Chi-square \nExact percentage of lifetime endometriosis related symptoms in All participants, Australian and Non-Australian participants: Period pain (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%, 89.7%), 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 (82.17%, 82.6%, 81.2%), Irregular bleeding (65.11%, 64.6%, 66.3%), Delayed fertility (37.98%, 38.2%, 37.5%), and Other (22.03%, 22.3%, 25.45%).","description":"","filename":"Fig2.jpg","url":"https://assets-eu.researchsquare.com/files/rs-126422/v1/593f314d83d6ddc7f3eade27.jpg"},{"id":4477067,"identity":"97b3daf3-fb95-4868-8a87-d4491ee86bc1","added_by":"auto","created_at":"2020-12-23 16:18:43","extension":"jpg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":65768,"visible":true,"origin":"","legend":"Lifetime treatments used for endometriosis in participants in percentage (all participants (n=903), Australian (n=642) and Non-Australian participants (n=261)) \nPvaluea: Chi-square test \nExact percentage of lifetime treatments used for endometriosis in All participants, Australian and Non-Australian participants: Pain killers (96.01%, 96.4%, 95%), Hormonal medication (e.g. the contraceptive pill or implant) (84.71%, 84.1%, 86.2%), Surgical treatments (84.49%, 84.9%, 83.5%), Complementary treatments (e.g. naturopathy or acupuncture) (45.62%, 48.8%, 37.9%), Hormonal IUD (e.g. the Mirena) (37.54%, 39.4%, 33%), Psychologist (25.47%, 27.1%, 21.5%),Nutritionist (21.7%, 22.3%, 20.3%), Physiotherapist (16.16%, 18.2%, 11.1%), Other (11.6%, 10.3%, 14.9%), and Sexual therapist (2.9%, 2.8%, 1.9%).","description":"","filename":"Fig3.jpg","url":"https://assets-eu.researchsquare.com/files/rs-126422/v1/8288c97c991eba216a874b93.jpg"},{"id":13639134,"identity":"b0f3fb7f-7e57-49b8-83f5-b5956562e253","added_by":"auto","created_at":"2021-09-17 08:54:22","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":448096,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-126422/v1/be2a64fe-f5ce-4c37-aabf-17bb8ae3aefe.pdf"},{"id":4477333,"identity":"16643a8a-9e74-4eec-9e83-4781ac567921","added_by":"auto","created_at":"2020-12-23 16:24:43","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":29273,"visible":true,"origin":"","legend":"","description":"","filename":"Table11.docx","url":"https://assets-eu.researchsquare.com/files/rs-126422/v1/b80153039d3195cda78377e5.docx"},{"id":4477230,"identity":"f05de567-50d2-4109-9007-ab47606086da","added_by":"auto","created_at":"2020-12-23 16:21:43","extension":"pdf","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":152573,"visible":true,"origin":"","legend":"Appendix 1: Demographic and medical information form","description":"","filename":"Appendix1.pdf","url":"https://assets-eu.researchsquare.com/files/rs-126422/v1/a93fac37d18b6ec236b52215.pdf"},{"id":4477334,"identity":"a384db44-1b8f-4fdf-b56d-31d3f14f4848","added_by":"auto","created_at":"2020-12-23 16:24:43","extension":"pdf","order_by":3,"title":"","display":"","copyAsset":false,"role":"supplement","size":110930,"visible":true,"origin":"","legend":"Appendix 2: Flyers for the study","description":"","filename":"Appendix2.aaa.pdf","url":"https://assets-eu.researchsquare.com/files/rs-126422/v1/0822948ff78433adad3ca5f2.pdf"}],"financialInterests":"","formattedTitle":"\u003cp\u003eEndometriosis-Associated Symptoms and Diagnostic Delay: An Online Survey\u003c/p\u003e","fulltext":[{"header":"Background","content":"\u003cp\u003eEndometriosis is a debilitating gynecologic disease which uterine epithelial and stromal tissue is presented outside of the uterine cavity [1, 2] . It affects about 10-15% of women of reproductive age [3]. According to a longitudinal study in Australia, 1 in 9 women in which were born in 1973\u0026ndash;78 were diagnosed by age 40\u0026ndash;44 [4].\u003c/p\u003e\n\u003cp\u003eWomen with endometriosis experience a variety of symptoms. Up to 80% of women with endometriosis suffer from chronic pain such as dysmenorrhea, dyspareunia, persistent pelvic pain, non-menstrual pelvic pain and dyschezia [5] and it is revealed that 47% of infertile women have endometriosis [6].\u003c/p\u003e\n\u003cp\u003ePrevious research has found the negative effects of endometriosis are significant and extensive [3]. The physical and psychological impact of symptoms are often severe and unpredictable [7] , at a time in life when self-esteem, social involvement, school attendance, and performance are critical for this patient population, can lead to the development of serious emotional issues and cause long-term effects in their psychological well-being [8-11].\u003c/p\u003e\n\u003cp\u003eThe basic epidemiology of endometriosis has been difficult to assess for many reasons [13], including that diagnosis can only be made definitively by direct visualization during invasive laparoscopy or laparotomy and critically depends on the clinical expertise of the surgeon. Culturally, pain symptoms related to periods can be perceived by the women as a normal thing without seeking medical care [14, 15].\u003c/p\u003e\n\u003cp\u003eAs a result, many affected women remain undiagnosed, a significant diagnostic delay of 11.7 \u0026plusmn; 9.05 years was reported in the U.S.A., and 8.0 \u0026plusmn; 7.92 years in the U.K. [16]. In a cross-sectional study conducted between 2008 to 2010 on women aged 18 to 45 years were recruited from 10 countries, of whom 745 were consequently diagnosed with endometriosis, diagnostic delay was 6.7 \u0026plusmn; 6.3 years in affected women [17].\u003c/p\u003e\n\u003cp\u003eStudies have described the characteristics of women with endometriosis in two different populations, but only a few have investigated the demographics and symptomatology of endometriosis from different geographic regions or ethnicities. One study with similar patient demographics and characteristics in women with endometriosis in the U.S.A. and the U.K. reported significant differences including early age at diagnosis and less frequency of contraceptive use [18]. Ballweg et al., [19] reported that the delay between onset of symptoms and actual diagnosis of the disease of over 7020 women with confirmed endometriosis in the U.S.A. was 9.28 years [18]. Data from over 7000 confirmed endometriosis cases clearly show that delay in diagnosis (the average time to diagnosis is .9 years) is a major problem and that current treatments are far from satisfactory [19]. Reid et al., [20] through a cross-sectional survey of Australian adults over 18\u0026nbsp;years, found that prevalence of self-reported diagnosed endometriosis in the Australian women of reproductive age (18-49\u0026nbsp;years) was 3.4% (22 out of 652) [20], which aligns with previous Australian research on this topic, however, the prevalence rate from this data set was lower than the estimated prevalence from the Global Burden of Disease Study. Lack of awareness about this condition and lack of communication contributing to delayed diagnosis of endometriosis [21].\u003c/p\u003e\n\u003cp\u003eWith regards to endometriosis-associated symptoms, Fuldeore et al., [22] found that more had menstrual pelvic pain/cramping. Klein et al., [23] reported that dysmenorrhoea was the most common symptom in Belgian women but a study in the U.K. [24] showed that no difference in pain including dysmenorrhoea, dyspareunia, dyschezia was found between women with and without endometriosis. The profile of endometriosis as a chronic condition is needed to provide informed and accurate understanding of endometriosis by individuals, education and health professionals and the community more broadly. This will enable early recognition of symptoms, greater awareness of treatment options and understanding of the impact of the condition [22]. The aim of this study was to determine endometriosis-associated symptoms and diagnostic delay through an online survey\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cstrong\u003eData collection tool\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe Checklist for Reporting Results of Internet E-Surveys (CHERRIES) was followed to report this study [25].\u003c/p\u003e\n\u003cp\u003eA cross-sectional study was conducted using a self-report online survey in Australia. This article is part of a larger study related to the development and validation of the Endometriosis Impact Questionnaire (EIQ) [26] .\u003c/p\u003e\n\u003cp\u003eAn online questionnaire including the demographic and medical questions was created using the Australian National University Polling Online system called \u0026lsquo;APOLLO\u0026rsquo;(Link: \u003ca href=\"about:blank\"\u003ehttps://apollo.anu.edu.au/default.asp?pid=7700\u003c/a\u003e). Demographic and medical information form (Appendix 1) designed by the main researcher through an extensive literature review, and revised and finalized by the research team, was used to collect data including demographics, diagnosis of endometriosis, educational level, employment condition, obstetrics history including history of pregnancy and having children, and history of delayed fertility, endometriosis-associated symptoms lifetime, diagnostic delay, treatments, and having hysterectomy because of endometriosis. LoBiondo-Wood \u0026amp; Haber (2010) noted that a unique method of accessing and recruiting subjects is the use of online computer networks [27]. The online web-based survey was designed as \u0026lsquo;survey- open\u0026rsquo;, which means there was no need to log in to complete the questionnaire, making it anonymous. Responders were able to come back to the previous completed pages and review or change their responses. Questions of the physical-psychosocial and lifestyle dimensions were mandatory, , remaining dimensions were not mandatory although there was the option of \u0026ldquo;Not applicable\u0026rdquo; if the question or non-mandatory dimensions were not relevant to responders.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSample and setting\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe target group in this survey was women with self-reported diagnosis of endometriosis and ability to understand English, from secondary or tertiary care levels as well as from the general community, with an emphasis on those residing in Australia. However, it had been predicted that endometriosis patients from outside Australia might complete the questionnaire as the questionnaire went online. For this reason, questions relating to current location and country of origin were included in the demographic questions.\u003c/p\u003e\n\u003cp\u003eTo recruit a sufficiently large number of accessible participants, convenience sampling and snowball sampling of women meeting the inclusion criteria were used. The invitation email stated that \u0026ldquo;If you know any women with endometriosis who might like to participate in this study, please help us by sending this email to them.\u0026rdquo;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSample size\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe sample included all 903 participants who completed the online questionnaire of a larger study related to development of the Endometriosis Impact Questionnaire (EIQ) consisting of 642 Australian (were born in Australia) and 261 Non-Australian (were not born in Australia) women with confirmed endometriosis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ePilot study\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eRecruitment began in October 2013 by sending an invitation email with an embedded link to the online questionnaire and an information form to 40 email addresses obtained from the dedicated Endometriosis Centre in Canberra, Australia to test technical functionality of the online questionnaire ?and flow of questions. From the responses received, questions and answers were assessed to ensure that everything was satisfactory, and thereafter the online questionnaire was released widely to the public.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData collection procedures\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe first page of the online survey included a brief information form including aim of the study, estimated length of time to complete questionnaire, and it was stated that \u0026ldquo;Completing this questionnaire is voluntary. The online survey was an anonymous web-based survey, and could be completed without a log in.\u003c/p\u003e\n\u003cp\u003eMany groups/organisations and people were asked to assist with disseminating the study link through different strategies. These included a range of local through to national government and private health facilities and specialized women\u0026rsquo;s health services; and leading endometriosis and women\u0026rsquo;s health organisations\u0026rsquo;. Inernational dissemination included Endometriosis New Zealand.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData analysis\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll data were entered and analyzed using Stata (version 14/1). Data were reported by descriptive statistics including means, standard deviations (SD), proportions, and ranges. Data were analyzed using Mann-whitney, chi-square test, Fisher\u0026rsquo;s exact test and a probability values of p\u0026lt; 0.05 were considered to be statistically significant.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eDemographic and clinical characteristics of participants are provided in Table \u003ca href=\"about:blank#Tab1\"\u003e1\u003c/a\u003e.\u003c/p\u003e\n\u003cp\u003eResponse rate was not calculated in the current study as it was not technically available through the used polling online system. Most items were compulsory in this online survey and submission was possible only by completing all pages, so there were no missing data in this survey.\u003c/p\u003e\n\u003cp\u003eOf the 903 participants 71.10 % (n=642 ) of participants were born in Australia and 28.90% (n=261) were born outside Australia, in countries including the U.S.A. (82), U.K. (29), New Zealand(34), England(21), Ireland(17), Canada(14), Scotland(7), Republic of South Africa(7), Scotland)7), Germany(5), Netherlands(3), Korea(3), Italy(3), Japan(2), Poland(2), Malaysia(2), Indonesia(2), Wales(1), Slovakia(1), Tanzania(1),Greece(1), Mexico(1), Nigeria(1), Chile(1), Slovenia(1), Trinidad(1), Singapore(1), Bulgaria(1), Barbados(1), Malaya(1), Namibia(1), Honduras(1), Philippines(1), Macedonia(1), South Switzerland(1), Poland(1), Sweden(1), Norway(1).\u003c/p\u003e\n\u003cp\u003eParticipants were aged 16-68 years with self-reported confirmed diagnosis of endometriosis by surgery (86.5%) and the rest had a provisional diagnosis mostly based on ultrasound or symptoms. Mean age at onset of symptoms was 16.61\u0026plusmn; 5.7 years, at first visit to doctor was 19.98\u0026plusmn; 7.2 years, and at diagnosis was 24.81\u0026plusmn;6.9 years, making a delay in diagnosis of 8.1\u0026plusmn;6.2 years from the onset of symptoms.\u003c/p\u003e\n\u003cp\u003eThe Australian and non-Australian participants were within the age ranges of 16-66 (33.46\u0026plusmn;8.4) and 18-68 (32.38\u0026plusmn;9.4) years respectively and there was no statistically significant difference between the two groups (P=0.35). The predominant language in both groups was English (P\u0026lt;0.001). In addition, 39.1% and 43.3% of Australian and non-Australian patients were married, respectively. Approximately 30% and 34.5% of Australian and non-Australian participants had tertiary education, respectively. Additionally, 90.5% and 81.6% of Australian and non-Australian women were employed, respectively. There was no significant difference between the two groups in terms of full-time employment, education level, and part-time and full-time occupation, retirement, and home duties (P\u0026gt;0.05) (Table 1).\u003c/p\u003e\n\u003cp\u003eMean ages of Australian and non-Australian women at the onset of the first symptoms were 16.5\u0026plusmn;5.5 (within the age range of 9-46) and 16.9\u0026plusmn;6.3 (within the age range of 8-42), respectively. There was no statistically significant difference between the two groups in this regard (P=0.93). Besides, the mean age of Australian and non-Australian women at the time of the diagnosis of symptoms were 24.4\u0026plusmn;6.9 (within the age range of 12-46) with a delay of 7.9\u0026plusmn;6.3 years and 25.6\u0026plusmn;7.1 (within the age range of 14-48) with a delay of 8.6\u0026plusmn;6, respectively. Although the Australian women were diagnosed at a marginally younger age, the results did not indicate a significant difference between the two groups (P=0.11) (Figure 1).\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;Participants with delayed fertility was 37.1%, never pregnant 54.8 %, miscarriage or stillbirth 13.4% , hysterectomy because of endometriosis 9.6 %.\u003c/p\u003e\n\u003cp\u003eAustralians (54.4%) and non-Australian participants (55.9%) had never been pregnant, respectively. Furthermore, 37.5% and 36.0% of Australian and non-Australian women with endometriosis were infertile, respectively.\u003c/p\u003e\n\u003cp\u003eAbout 13% of people in both groups had a history of miscarriage and stillbirth and more than 30% of them had a history of infertility. Prevalence of hysterectomy due to endometriosis was not significantly different between the two groups (P\u0026gt;0.05) (Table 1).\u003c/p\u003e\n\u003cp\u003eSelf-reported diagnosis of endometriosis was confirmed by surgery in 86.5% of participants including 87.9% of Australian and 83.1% of non-Australian; in which did not indicate a significant difference between the two groups (P=0.06). Australians (48.6%) and non-Australians (64.2%) were referred to the emergency department at least once due to endometriosis symptoms and here was a statistically significant difference between the two groups in this regard (P\u0026lt;0.001).\u003c/p\u003e\n\u003cp\u003eEndometriosis-related symptoms that Australian participants experienced in their lifetime were period pain 98.6%(n=633), fatigue 93.5%(n=600), bloating 89.7%(n=576), ovulation pain 88.3%(n=567), heavy bleeding 82.6%(n=530), pelvic pain 81.6%(n=553), pain during/before/after sexual activity 81.6%(n=524), Heavy bleeding 82.6%, irregular bleeding 64.6% (n=415), delayed fertility 38.2% (n=245), and other 22.3% (n=143). For the Non- Australian participants symptoms were period pain 96.9%(n=253), fatigue 95.4%(n=249), bloating 93.1%(n=243), pelvic pain 90%(n=235), ovulation pain 89.7%(n=234), pain during/before/after sexual activity 85.4% (n=223), heavy bleeding 81.2% (n=212), irregular bleeding 66.3% (n=173), delayed fertility 37.5% (n=98), and other 25.45% (n=56). The prevalence of symptoms had no significant difference between the two groups (P\u0026gt;0.05) (Figure 2).\u003c/p\u003e\n\u003cp\u003eLifetime treatments used for endometriosis by Australian participants included: Pain killers 96.4% (n=619), surgical treatments 84.9% (n=545), hormonal medication 84.1% (n=540), complementary treatments 48.8% (n=313), hormonal IUD 39.4% (n=253), psychologist 27.1% (n=174), nutritionist 22.3% (n=143), physiotherapist 18.2% (n=117), sexual therapist 2.8% (n=18) and other 10.3% (n=66). For the Non- Australian participants, lifetime treatments used were Pain killers 95% (n=248), hormonal medication 86.2% (n=225), surgical treatments 83.5% (n=218), complementary treatments 37.9% (n=99), hormonal IUD 33% (n=86), psychologist 21.5% (n=56), nutritionist 20.3% (n=53), physiotherapist 11.1% (n=29), sexual therapist 1.9% (n=5) and other 14.9% (n=39).\u003c/p\u003e\n\u003cp\u003eThere was no difference between the two groups in terms of the consumption of analgesics, hormone medications, and surgical treatments (P\u0026gt;0.05). However, the use of complementary treatments (P=0.003) and referral to a physiotherapist (P=0.008) was significantly higher in Australian women (Figure 3).\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe present study aimed to determine the demographic characteristics and symptoms associated with endometriosis in Australian participants and compared them with those of non-Australian participants.\u003c/p\u003e\n\u003cp\u003eMean age of Australian and non-Australian participants and mean diagnostic delay were not significantly different between the two groups.\u003c/p\u003e\n\u003cp\u003eReid et al., [20] identified that women self-reporting a diagnosis of endometriosis, mostly were between 40\u0026ndash;49 years of age, with a higher proportion living in South Australia (18.2%). In study \u003ca href=\"https://journals.sagepub.com/action/doSearch?target=default\u0026amp;ContribAuthorStored=Bernuit%2C+David\"\u003eBernuit\u003c/a\u003e et al., (2011) prevalence of the different diagnoses was comparable between eight countries (Brazil, Canada, France, Germany, Italy, South Korea, U.K., and the U.S.A). Mean age at diagnosis was 28 years and estimated time to diagnosis was 6.1 years [28]. This rate is close to that found in previous studies, which have identified delays of 6.7\u0026plusmn;6.3 years in a cross of ten country study [17] . In a study by Khong et al., (2010) mean age of the respondents was 34.6\u0026plusmn;7.6 years, the average time since onset of symptoms to first consultation was 9.8 years, although the average time from symptom onset to first diagnosis of endometriosis was 4.5 years [29].\u003c/p\u003e\n\u003cp\u003eIn a study by Hudelist et al., (2012) in Austria and Germany with 171 participants, the mean age at the time of diagnosis were 32\u0026plusmn;6 years. The diagnostic delay for women with pelvic pain was 10.5 years and 9.8 years for patients with subfertility [30]. This period lies above the upper range in European countries reporting a median delay time of 8 years in the U.K. and Spain[17, 29- 31] , 6.7 years in Norway [31] 8.9 years in Puerto Rico [12] 7\u0026ndash;10 years in Italy and 4 \u0026ndash;5 years in Ireland and Belgium [17]. The mean age and delay in diagnosis in the above studies is similar to the present study, thus confirms patients with endometriosis endure symptoms for years without being diagnosed.\u003c/p\u003e\n\u003cp\u003ePain is one of its predominant clinical symptom women with endometriosis experience, mostly dysmenorrhea, noncyclical pelvic pain, dyspareunia, and dyschezia [32]. Fatigue is an underestimated symptom of endometriosis yet it affects the majority of women with endometriosis. Fatigue can cause major distress impacting the daily activities and quality of life of women with endometriosis [33]. A multicentre cross-sectional study in women with endometriosis in Switzerland, Germany and Austria found that they suffered significantly from chronic pain and fatigue [34].\u003c/p\u003e\n\u003cp\u003eSymptoms, such as dysmenorrhea, fatigue, pelvic pain, dyspareunia, and heavy bleeding were more common in Australian women with endometriosis. Nevertheless, these symptoms were also reported by most non-Australian respondents and there was no statistically significant difference between the two groups. According to the results of a study by Kuohung et al., (2002), concluded the many similarities in demographics, symptoms, and behaviors among women with endometriosis in the U.S. and in the U.K. support the universality of the disease process [18]. Similarly in the present study between both groups of Australian and non-Australian women, there were slight differences in the frequency of endometriosis-associated symptoms but those were not statistically significant. In contrast to the present study, Fourquet et al., [35] compared characteristics of women with endometriosis from the U.S.A. and Puerto Rico, and showed that endometriosis patients from two ethnically and geographically dissimilar populations vary in their reporting of symptoms associated with endometriosis and co-morbid conditions, and concluded that clinical scenarios and history differ, likely due to genetics, access to care, cultural issues, and years dealing with the symptoms.\u003c/p\u003e\n\u003cp\u003eTo treat endometriosis, conventional of medical and surgical approaches are dominated, however there are some non-pharmacological therapies including complementary and alternative medicine [36, 37]. In the present study, analgesia, hormone therapy, and surgery were among the majority of treatment modalities reported by patients but no statistically significant difference between Australian and non-Australian women was found. Long-term use of painkillers and hormone medication is risky due to the potential side effects and the high probability of recurrence [37]. Surgery is also more invasive and expensive in comparison to other treatments, carries risk of complications, and may be effective only temporarily [38].\u003c/p\u003e\n\u003cp\u003eThe complementary and alternative medical therapies for endometriosis and its mechanisms in the published literature mainly include herbal products, acupuncture, microwave physiotherapy, CHM enema, and psychological interventions [36]. Australian longitudinal cross-sectional survey reported a higher use of \u0026lsquo;vitamins/minerals\u0026rsquo;, \u0026lsquo;yoga/meditation\u0026rsquo; or \u0026lsquo;acupuncture/TCM\u0026rsquo; in women with endometriosis compared with non sufferers [39]. In a study by Schwartz et al., [34] 62.5% of women with confirmed diagnosis of endometriosis, used some form of complementary health approaches/home remedies and women suffering from fatigue often selected alternative therapies. In the present study, 48.8% of Australian women had resorted to complementary medicine to relieve endometriosis-associated symptoms and there was significantly higher than Non- Australian participants.\u003c/p\u003e\n\u003cp\u003eIn the present study, more than 13% of women in both groups had a history of abortion. Luteal phase insufficiency combined with decreased estrogen and progesterone levels, decreased circulating estradiol levels during the pre-ovulatory phase, and endometrial changes have been reported as causes of abortion in endometriosis patients. Based on the results of a systematic review, in spontaneous pregnancies, endometriosis increases the risk of miscarriage by about 80% [40].\u003c/p\u003e\n\u003cp\u003ePrevious studies have indicated that 30-50% of women with endometriosis are infertile. Ovarian involvement, adhesions, and decreased mobility of the fallopian tubes can lead to reduced fertility. Several mechanisms have been suggested, including ovulatory dysfunction, luteal phase defect, luteinized unruptured follicle syndrome, immunosuppression, and peritonitis [41-42].\u003c/p\u003e\n\u003cp\u003eHistory of delayed fertility among Australian and non-Australian participants in the present study was consistent with the infertility rate among endometriosis patients reported in the U.S.A. [19].\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eLimitations of this study\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThere are some limitations in the present study which decrease the ability to generalize the results. Limitations related to self-reporting and recall errors may apply. Web-based survey was used in the current study, therefore the generalizibility of the results is limited to those who are keyboard and Internet literate [43]. The online EIQ was designed as \u0026lsquo;survey- open\u0026rsquo;. This means there was no need to log in to complete the questionnaire, making it anonymous. Van Gelder et al., (2010) point out that in that case, calculating a response rate is difficult and multiple completions from one participant cannot be prevented, although some strategies, such as recording Internet protocol addresses and personal data, may detect multiple submissions [44]. In this study, during data cleaning, data were assessed for duplication based on demographics and no duplications were found. Dissemination of the study link was focused inside Australia and 71.10% of responders to the online survey were born in Australia. Therefore, the applicability to Australian women with different characteristics to the participants, and non-Australians might be limited. In addition, it is not clear whether some of the respondents from outside Australia were actually Australians living in another country then this is a limitation. Finally, this study did not collect clinical information such as the severity of endometriosis lesions or the existence of comorbidities that could also contribute to symptoms. It is acknowledged that not knowing these clinical characteristics of the sample could limit the generalizability of the findings.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eSimilarities in demographics and endometriosis-associated symptoms among the Australian and non-Australian women with endometriosis were identified, which supports the universality of the disease characteristics. Delay in diagnosis of endometriosis is a problem and reasons for delayed diagnosis must be better understood to try to shorten this delay and improve quality of their lives. Except for pain, endometriosis patients suffer from a variety of symptoms and treatment must take into account the most prominent symptoms. It is helpful to review appropriate corrective actions to reduce the time interval between the report of symptoms and confirmed diagnosis, consultation, and treatment.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eApprovals were obtained from the Australian Capital Territory (ACT) Health Human Research Ethics Committee (with code of ETH.6.13.155), and from the Survey Resource Group (SRG), and from the Australian National University (ANU) Human Research Ethics Committee and all methods were performed with the relevant guidelines and regulations. Informed consent was obtained from all subjects in which on first page of the online survey stated that \u0026ldquo;By completing the questionnaire you are indicating your consent to participate in the study\u0026rdquo;. Young people were capable of consenting in their own right as they were in the 16 - 18 year age group and considered capable of giving consent to their medical treatment.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets generated and analyzed during the current study will be available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis research, including design of the study and data collection has been supported by the Australian National University (ANU), School of Medicine within a PhD candidature.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; \u003c/strong\u003e\u003cstrong\u003econtributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMM, MP, AS, VL and DA jointly contributed to the study design, analysis and interpreting of data. MM and MP identified potential participants and recruited the participants. MM and MP developed the online questionnaire. MM, AN and VL completed analysis. MM, AZ and DE drafted the manuscript. MM, AN, MP, AS, VL and DE revised the manuscript critically and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis article has been derived from a study pertaining to thesis submitted for the degree of Doctor of Philosophy at the Australian National University Medical School. We thank the participants for completing the questionnaire and helping us to make this study possible. We acknowledge the many organizations and people who helped this study by disseminating the online questionnaire link.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eAhn SH, Singh, V, Tayade, C. Biomarkers in endometriosis: challenges and opportunities. Fertility and sterility.2017:\u0026nbsp;107(3), 523-532.\u0026rlm;\u003c/li\u003e\n\u003cli\u003eBurkman RT. Berek \u0026amp; Novak\u0026rsquo;s gynecology. 2012; 308(5):516-7.\u003c/li\u003e\n\u003cli\u003eMao A \u0026amp; Anastasi J. Diagnosis and management of endometriosis: The role of the advanced practice nurse in primary care.\u0026nbsp;Journal of the American Academy of Nurse Practitioners. 2010.\u0026nbsp;22(2), 109-116.\u0026rlm;\u003c/li\u003e\n\u003cli\u003eAIHW. Endometriosis in Australia: prevalence and hospitalizations.\u003cbr /\u003ehttps://www.aihw.gov.au/getmedia/a4ba101d-cd6d-4567-a44f-f825047187b8/aihw-phe-247.pdf.aspx?inline=true\u003c/li\u003e\n\u003cli\u003eBulletti C, Coccia M, Battistoni S \u0026amp; Borini A. Endometriosis and infertility.\u0026nbsp;Journal of assisted reproduction and genetics. 2010.\u0026nbsp;27(8), 441-447.\u0026rlm;\u003c/li\u003e\n\u003cli\u003eMeuleman C, Vandenabeele B, Fieuws S, Spiessens C, Timmerman D \u0026amp; D'Hooghe T. High prevalence of endometriosis in infertile women with normal ovulation and normospermic partners.\u0026nbsp;Fertility and sterility.2009.\u0026nbsp;92(1), 68-74.\u0026rlm;\u003c/li\u003e\n\u003cli\u003eLagan\u0026agrave; A, La Rosa V ,Rapisarda A ,Valenti G, Sapia F , Chiofalo B. Anxiety and depression in patients with endometriosis: impact and management challenges. International journal of women's health. 2017;9:323\u003c/li\u003e\n\u003cli\u003eBrosens I, Gordts S, Benagiano G. Endometriosis in adolescents is a hidden, progressive and severe disease that deserves attention, not just compassion. Human Reproduction. 2013;28(8):2026-31.\u003c/li\u003e\n\u003cli\u003eFriedl F , Riedl D , Fessler S , Wildt L , Walter M , Richter R. Impact of endometriosis on quality of life, anxiety, and depression: an Austrian perspective. Archives of gynecology and obstetrics. 2015;292(6):1393-9.\u003c/li\u003e\n\u003cli\u003eFacchin F ,Barbara G ,Dridi D , Alberico D , Buggio L, Somigliana E. 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Endometriosis and pelvic pain: relation to disease stage and localization. Fertility and sterility.1996,65(2):299-304.\u003c/li\u003e\n\u003cli\u003eVigan\u0026ograve; P, Parazzini F,Somigliana E,Vercellini P. Endometriosis: epidemiology and aetiological factors. Best practice \u0026amp; research Clinical obstetrics \u0026amp; gynaecology. 2004,18(2):177-200.\u003c/li\u003e\n\u003cli\u003eHadfield R, Mardon H, Barlow D \u0026amp; Kennedy S. Delay in the diagnosis of endometriosis: a survey of women from the USA and the UK.\u0026nbsp;Human Reproduction. 1996.\u0026nbsp;11(4), 878-880.\u0026rlm;\u003c/li\u003e\n\u003cli\u003eNnoaham KE, Hummelshoj L, Webster P, d\u0026rsquo;Hooghe T, de Cicco Nardone F, de Cicco Nardone C. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertility and sterility. 2011,96(2):366-73. e8.\u003c/li\u003e\n\u003cli\u003eKuohung W, Jones GL, Vitonis AF, Cramer DW, Kennedy SH, Thomas D. Characteristics of patients with endometriosis in the United States and the United Kingdom. Fertility and sterility. 2002,78(4):767-72.\u003c/li\u003e\n\u003cli\u003eBallweg M. obstetrics and gynaecology. Impact of endometriosis on women's health: comparative historical data show that the earlier the onset, the more severe the disease. Best practice \u0026amp; research Clinical obstetrics \u0026amp; gynaecology.2004,18(2):201-18.\u003c/li\u003e\n\u003cli\u003eReid R, Steel A, Wardle J, McIntyre E, Harnett J, Foley H. The prevalence of self-reported diagnosed endometriosis in the Australian population: results from a nationally-representative survey. BMC Research Notes. 2019,12(1):88.\u003c/li\u003e\n\u003cli\u003eCox H, Ski C, Wood R \u0026amp; Sheahan M. Endometriosis, an unknown entity: the consumer's perspective.\u0026nbsp;International journal of consumer studies. 2003.\u0026nbsp;27(3), 200-209.\u0026rlm;\u003c/li\u003e\n\u003cli\u003eFuldeore M, Soliman, A. Prevalence and symptomatic burden of diagnosed endometriosis in the United States: national estimates from a cross-sectional survey of 59,411 women. Gynecologic and obstetric investigation. 2017,82(5):453-61.\u003c/li\u003e\n\u003cli\u003eKlein S, D\u0026rsquo;Hooghe T, Meuleman C, Dirksen C, Dunselman G, Simoens S. What is the societal burden of endometriosis-associated symptoms? A prospective Belgian study. Reproductive BioMedicine Online. 2014,28(1):116-24.\u003c/li\u003e\n\u003cli\u003eApostolopoulos NV, Alexandraki KI, Gorry A, Coker A. Association between chronic pelvic pain symptoms and the presence of endometriosis. Archives of gynecology and obstetrics. 2016;293(2):439-45.\u003c/li\u003e\n\u003cli\u003eEysenbach G. Improving the quality of Web surveys: the Checklist for Reporting Results of Internet E-Surveys (CHERRIES). Journal of medical Internet research. 2004;6(3):e34.\u003c/li\u003e\n\u003cli\u003eMoradi M, Parker M, Sneddon A, Lopez V, Ellwood D. The Endometriosis Impact Questionnaire (EIQ): a tool to measure the long-term impact of endometriosis on different aspects of women\u0026rsquo;s lives. BMC women's health. 2019;19(1):64.\u003c/li\u003e\n\u003cli\u003eLoBiondo-Wood G, Haber J. Nursing Research: Methods and Critical Appraisal for Evidence-Based Practice, Mosby. 2010.\u003c/li\u003e\n\u003cli\u003eBernuit D, Ebert AD, Halis G, Strothmann A, Gerlinger C, Geppert K. Female perspectives on endometriosis: findings from the uterine bleeding and pain women's research study. Journal of Endometriosis. 2011,3(2):73-85\u003c/li\u003e\n\u003cli\u003eKhong S-Y, Lam A, Luscombe G. Is the 30-item Endometriosis Health Profile (EHP-30) suitable as a self-report health status instrument for clinical trials? Fertility and sterility. 2010,94(5):1928-32.\u003c/li\u003e\n\u003cli\u003eHudelist G, Fritzer N, Thomas A, Niehues C, Oppelt P, Haas D. Diagnostic delay for endometriosis in Austria and Germany: causes and possible consequences. Human reproduction. 2012,27(12):3412-6.\u003c/li\u003e\n\u003cli\u003eBallard K, Lowton K, Wright J. What\u0026rsquo;s the delay? A qualitative study of women\u0026rsquo;s experiences of reaching a diagnosis of endometriosis. Fertility and sterility. 2006,86(5):1296-301.\u003c/li\u003e\n\u003cli\u003eMorotti M, Vincent K, Becker C. Mechanisms of pain in endometriosis. European Journal of Obstetrics \u0026amp; Gynecology and Reproductive Biology. 2017,209:8-13.\u003c/li\u003e\n\u003cli\u003eRamin-Wright A, Schwartz A, Geraedts K, Rauchfuss M, W\u0026ouml;lfler M, Haeberlin F. Fatigue\u0026ndash;a symptom in endometriosis. Human reproduction. 2018,33(8):1459-65.\u003c/li\u003e\n\u003cli\u003eSchwartz A, Gross E, Geraedts K, Rauchfuss M, W\u0026ouml;lfler MM, H\u0026auml;berlin F. The use of home remedies and complementary health approaches in endometriosis. Reproductive biomedicine online. 2019,38(2):260-71.\u003c/li\u003e\n\u003cli\u003eFourquet J, Sinaii N, Stratton P, Khayel F, Alvarez-Garriga C, Bayona M\u0026amp; Flores I. Characteristics of women with endometriosis from the USA and Puerto Rico.\u0026nbsp;Journal of endometriosis and pelvic pain disorders. 2015.\u0026nbsp;7(4), 129-135.\u0026rlm;\u003c/li\u003e\n\u003cli\u003eKong S, Zhang Y-H, Liu C-F, Tsui I. The complementary and alternative medicine for endometriosis: a review of utilization and mechanism. Evidence-Based Complementary and Alternative Medicine. 2014.\u003c/li\u003e\n\u003cli\u003eMarqui A. Non-pharmacological approach to pain in endometriosis. Revista Dor.\u0026nbsp;2014:15(4), 300-303\u003c/li\u003e\n\u003cli\u003eJohnson NP, Hummelshoj L, Consortium W, Abrao M, Adamson G, Allaire C. Consensus on current management of endometriosis. Human reproduction.2013,28(6):1552-68.\u003c/li\u003e\n\u003cli\u003eFisher C , Adams J , Hickman L , Sibbritt D. The use of complementary and alternative medicine by 7427 Australian women with cyclic perimenstrual pain and discomfort: a cross-sectional study. BMC complementary and alternative medicine. 2016;16(1):129.\u003c/li\u003e\n\u003cli\u003eMinebois H, De A, de Malartic Mezan C, Agopiantz M, Guillet FM. Endometriosis and miscarriage: Systematic review. Gynecologie, Obstetrique, Fertilite \u0026amp; Senologie. 2017:45 (7-8), 393-399.\u003c/li\u003e\n\u003cli\u003eMacer ML, Taylor H. Endometriosis and infertility: a review of the pathogenesis and treatment of endometriosis-associated infertility. Obstetrics and Gynecology Clinics. 2012;39(4):535-49.\u003c/li\u003e\n\u003cli\u003eBoujenah J, Salakos E, Pinto M, Shore J, Sifer C, Poncelet C. Endometriosis and uterine malformations: infertility may increase severity of endometriosis. Acta obstetricia et gynecologica Scandinavica. 2017,96(6):702-6.\u003c/li\u003e\n\u003cli\u003ePeng Y-H, Liao W-C, Huang C-W, Hsu CY, Chen H-J. Asthma is associated with endometriosis: A retrospective population-based cohort study. Respiratory Medicine. 2017,132:112-6.\u003c/li\u003e\n\u003cli\u003eVan Gelder M, Bretveld R. W \u0026amp; Roeleveld N. Web-based questionnaires: the future in epidemiology? Am J Epidemiol. 2010, 172(11), 1292-1298.\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eDue to technical limitations, table 1 is only available as a download in the Supplemental Files section.\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Diagnosis, Diagnostic delay, Endometriosis, Symptoms","lastPublishedDoi":"10.21203/rs.3.rs-126422/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-126422/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground:\u003c/strong\u003e Endometriosis is found in women of all ethnic and social groups with a prevalence of around 10%. However, data on diagnostic-delay and associated symptoms are limited. The aim of this study was to determine the endometriosis-associated symptoms and diagnosis-delay through an online survey. \u003c/p\u003e\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e: A cross-sectional study was conducted in Australia using an online web-based survey. All data were entered and analyzed using STATA (version 14/1). A total of 903 responders completed an online survey from September 2013 to October 2015.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e Total participants of 903, 71.10% Australians (were born in Australia) and 28.90% Non-Australian (were not born in Australia), with self-reported diagnosis of endometriosis was confirmed by surgery in 86.5% of participants completed the online survey. Delay in diagnosis was 8.1±6.2 years. There was no difference between age range (p = 0.35), mean age of onset of the first symptoms (p = 0.93), and delay in diagnosis (p = 0.11) in both groups. Most common endometriosis-related symptoms that all responders had experienced in their lifetime were period pain 98.11%, fatigue 94.01%, bloating 90.69%, ovulation pain 88.70%, pelvic pain 87.26%, pain during before/after sexual activity 82.72% and heavy bleeding 82.17% and delayed fertility 37.98%. Treatments used in affected women included: pain killers 96.01% (n=867), hormonal medication 84.71% and surgical treatments 84.49 %. Rate of miscarriage or stillbirth was 13.4% and hysterectomy because of endometriosis was 9.6%. \u003c/p\u003e\u003cp\u003e\u003cstrong\u003eConclusions\u003c/strong\u003e: Vast similarities in demographics and endometriosis-associated symptoms among the Australian and non-Australian women with endometriosis support the universality of the disease characteristics. Delay in diagnosis of endometriosis is a problem and the reasons for delayed diagnosis must be better understood to try to shorten this delay. Except for pain, endometriosis patients suffer from a variety of symptoms and treatment must take into account the most prominent symptoms.\u003c/p\u003e","manuscriptTitle":"Endometriosis-Associated Symptoms and Diagnostic Delay: An Online Survey","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2020-12-23 16:18:42","doi":"10.21203/rs.3.rs-126422/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"699bfe46-3519-4221-8e2b-791a3edcbb3f","owner":[],"postedDate":"December 23rd, 2020","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":1578075,"name":"Internal Medicine"},{"id":1578076,"name":"Preventive Medicine"}],"tags":[],"updatedAt":"2021-03-26T12:29:14+00:00","versionOfRecord":[],"versionCreatedAt":"2020-12-23 16:18:42","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-126422","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-126422","identity":"rs-126422","version":["v1"]},"buildId":"WvIrzKhiLBfengagbw6Ux","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}