Comparing psychological distress, health-related quality of life and pain in people diagnosed with endometriosis and those suspected to have endometriosis

Comparing psychological distress, health-related quality of life and pain in people diagnosed with endometriosis and those suspected to have endometriosis | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Comparing psychological distress, health-related quality of life and pain in people diagnosed with endometriosis and those suspected to have endometriosis Danielle Mosterd, Antonina Mikocka-Walus, Leesa Van Niekerk, David Skvarc, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6953959/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Purpose: To assess whether pain, psychological distress and health-related quality of life (HRQoL) differ in people diagnosed with endometriosis and those suspected to have endometriosis. Methods: This study was a cross-sectional online survey of people with a confirmed ( n = 550) or suspected ( n = 103) diagnosis of endometriosis, recruited via the social media of Australian endometriosis organisations. The survey collected demographic and endometriosis-specific characteristics as well as measures of pain, psychological distress and HRQoL. Analysis of variance was conducted to compare groups on key variables. Results: The suspected endometriosis group reported significantly greater pelvic pain ( F (1, 651) = 8.427, p = .004; partial η2 = .013), symptoms of depression ( F (1, 651) = 4.658, p = .031; partial η2 = .007), symptoms of anxiety ( F (1, 651) = 9.437, p = .002; partial η2 = .014), and HRQoL in the EHP-5 domains of pain ( F (1, 651) = 4.114, p = .043; partial η2 = .006.), control and powerlessness ( F (1, 651) = 4.129, p = .043; partial η2 = .006), and emotional wellbeing ( F (1, 651) = 4.310, p = .038; partial η2 = .00.) than the diagnosed group. Conclusions: People suspected to have endometriosis reported significantly higher pain and psychological distress and poorer HRQoL than those diagnosed. This suggests that diagnosis is associated with lower levels of pain and psychological distress and greater HRQoL, possibly due to improved accessibility to treatment and validation and removal of uncertainty. endometriosis chronic pelvic pain psychological distress pain health-related quality of life Article Highlights People suspected to have endometriosis reported greater pain and psychological distress than people diagnosed The suspected endometriosis group also reported poorer health-related quality of life than the diagnosed group Suggesting that endometriosis diagnosis may reduce pain and psychological distress and increase quality of life Introduction Endometriosis is an inflammatory condition affecting one in seven women and people assigned female at birth (AIHW, 2023). Current Australian data suggests endometriosis diagnosis takes between 6.4 and 12.4 years, which may be associated with disease progression and under-treatment (Mosterd et al., 2025 ; O’Hara et al., 2020 ). Due to difficulty accessing surgical or imaging-based diagnosis, some patients receive a temporary diagnosis of ‘suspected endometriosis’ (Gallicchio et al., 2015 ). The medical community is currently debating whether a prompt diagnosis of endometriosis is beneficial to patients, with The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG; 2025) stating there is insufficient evidence available. However, people with endometriosis have reported that diagnosis is important due to biopsychosocial benefits (Mosterd et al., 2025 ). They have called for diagnosis and treatment to focus on psychological wellbeing and Health-Related Quality of Life (HRQoL), rather than solely pain management and fertility preservation (Rowe et al., 2021 ) Psychological distress is common in people with endometriosis, with a 1.86 times higher prevalence of depression symptoms and 2.38 times higher prevalence of anxiety symptoms than healthy controls (Wang et al., 2021 ). A large study found reduced anxiety following diagnosis of endometriosis (Arena et al., 2021 ). Similarly, HRQoL, encompassing physical, psychological and social impacts of a condition or its treatment, is greatly impaired in people with endometriosis (Wang et al., 2021 ). Gallicchio et al. ( 2015 ) found significant improvements in HRQoL and pain after diagnostic laparoscopic surgery. Current data is lacking regarding the psychological wellbeing, pain and HRQoL of people suspected to have endometriosis, compared to those diagnosed. Such data may provide insights into the impact of diagnostic delay and contribute to the debate about whether diagnosis is beneficial. Therefore, the current study aims to compare pain, psychological wellbeing and HRQoL in people with endometriosis and those suspected to have endometriosis. It is hypothesised that people suspected to have endometriosis will have worse pain, psychological wellbeing and HRQoL than those diagnosed. Methods Participants Participants were aged 18 years or older, resided in Australia, with a self-reported confirmed ( n = 550) or suspected ( n = 103) diagnosis of endometriosis. Recruitment Participants were recruited via the social media and websites of Australian endometriosis foundations and online support groups. Recruitment occurred from September to December 2023. This study received ethics approval from the Deakin University Human Research Ethics Committee (2023 − 251). Participation in the study was voluntary, with informed consent given and no compensation provided. Measures Health and Demographic Information Demographic data and endometriosis-characteristics were collected. Reason for Suspected Diagnosis Participants with suspected endometriosis were asked “Why do you believe your endometriosis diagnosis has been delayed or taken a long time? Select all that apply”. Participants were provided with reasons based on common suggestions in past literature and a question asking to describe their diagnosis seeking journey or process. Results seen in Supplementary Material 1. Pain Pain was assessed using a 10-point numerical scale, where participants were asked ‘Rate your endometriosis pain from 1–10 over the last 7 days’, with the scale ranging from 1 ( painless ) to 10 ( worst pain imaginable ). Psychological Wellbeing: Depression, Anxiety and Stress Scale (DASS-21) The Depression, Anxiety and Stress Scale (DASS-21; Lovibond & Lovibond, 1995 ) is not diagnostic but indicates a participant’s level of depression, anxiety and stress symptoms over the last month, on a scale ranging from 0 ( did not apply to me at all ) to 3 ( very much or all the time ). Higher scores reflect a greater level of distress. Health-related Quality of Life: Endometriosis Health-Profile 5 (EHP-5) The Endometriosis Health Profile-5 (EHP-5) assesses the impact of endometriosis on everyday life (Jones et al., 2004 ).. The measures contain 5 questions measured on a 5-point Likert scale ranging from 0 ( Never) to 4 ( Always ), assessing pain, control and powerlessness, social support, emotional wellbeing and self-image. Higher scores reflect poorer HRQoL. Analysis A one-way multivariate analysis of variance (MANOVA) was conducted to determine the association of diagnosis status with pelvic pain, psychological distress and HRQoL. Preliminary assumption checking revealed that data was normally distributed, as assessed by visual inspection of QQ plots and there were linear relationships, as assessed by scatterplots. Stress showed multicollinearity within the DASS-21, correlating highly with the subscales of depression (r = .713, p < .001) and anxiety (r = .731, p < .001), and was removed from the model. There was homogeneity of variance-covariance matrices, as assessed by Box's M test (p = .185). There were a small number of univariate and multivariate outliers, as assessed by boxplot and Mahalanobis distance ( p > .001), respectively, which were not removed or transformed due to their small number. Follow up univariate ANOVAs were conducted to examine group differences. Ethics This study received ethics approval from the Deakin University Human Research Ethics Committee (2023-251). Participation in the study was completely voluntary, with informed consent given and no compensation provided. Results Demographics The sample had a mean age of 34 years, with participants predominantly identifying as women (95.9%), of Western ethnicity (93%), with 3.1% of the sample being of Aboriginal ethnicity (see Table 1). Demographics of each group are included in Table 1. The diagnosed group experienced a mean diagnostic delay of 12.31 ( SD = 7.6) years, ranging from 0 to 37 years. Most of this group were diagnosed via laparoscopy (86.4%), with the next most common method being ultrasound (10%). Table 1 Sample Descriptives Diagnosed Suspected M (SD) Range M (SD) Range Age 34.55 (8.179) 18 - 63 31.05 (6.786) 19 – 46 Frequency (%) Frequency (%) Gender Woman 524 (95.3) 102 (99) Trans Man 2 (.4) 1 (1) Non-binary 19 (3.5) Gender Fluid 3 (.5) Prefer not to answer 2 (.4) Sexual Orientation Heterosexual 417 (75.8) 69 (67) Queer 125 (22.7) 32 (31.1) Prefer not to answer 8 (1.5) 2 (1.9) Aboriginal Identity Aboriginal 15 (2.7) 5 (4.9) No 535 (97.3) 98 (95.1) Ethnicity Western 509 (92.5) 98 (95.1) Non-Western 41 (7.5) 5 (4.9) Region Metropolitan 357 (64.9) 62 (60.2) Regional and Remote 193 (35.1) 41 (39.8) Private Health Insurance Yes 409 (74.4) 61 (59.2) No 141 (25.6) 42 (40.8) Employment Full-time 262 (47.6) 56 (54.4) Other work (PT, casual) 199 (36.2) 32 (31.1) No paid work 89 (16.2) 15 (14.6) Children No 345 (62.7) 85 (82.5) Yes, biological 193 (35.1) 15 (14.6) Yes, non-biological 12 (2.2) 3 (2.9) Reason for Suspected Diagnosis The most predominant reason that participants reported for having a suspected diagnosis, rather than formal diagnosis, was dismissal of symptoms by previous medical professionals (73.8%). In other cases, difficulties paying for medical appointments, tests and surgeries prevented participants from getting diagnosed (32.0%) and long wait times for gynaecologist appointments (31.1%) and surgery (27.2%) contributed to a suspected diagnosis. Participants most commonly selected one ( n = 29, 28.2% of suspected group), two ( n = 25, 24.3%), or three ( n = 26, 25.2%) reasons for why they have a suspected diagnosis. The reasons and frequency are described in Table 2. Table 2 Reasons for Suspected Diagnosis/Currently Experiencing Diagnostic Delay Experience N (%) Doctor/s dismissed my symptoms for some time 76 (73.8%) I have financial difficulties paying for appointments, surgeries etc. 33 (32.0%) I am waiting for gynaecologist/surgeon appointment 32 (31.1%) I am waiting for surgery 28 (27.2%) I can manage symptoms without formal diagnosis or am content with a suspected diagnosis 20 (19.4%) I can’t have surgery due to commitments (e.g., family, work) 17 (16.5%) I don’t want surgery 9 (8.7%) I received diagnosis via imaging or a clinical diagnosis, however, I want further surgical confirmation 7 (6.8%) Doctor suspected endometriosis based on family history 5 (4.9%) Comparing Psychological Wellbeing, Pain and HRQoL There was a statistically significant difference between groups on psychological wellbeing, pain and HRQoL, F (8, 644) = 2.024, p .041; Pillai’s Trace = .25; partial η2 = .025. Follow-up univariate ANOVAs showed that pelvic pain ( F (1, 651) = 8.427, p = .004; partial η2 = .013), depression ( F (1, 651) = 4.658, p = .031; partial η2 = .007.), anxiety ( F (1, 651) = 9.437, p = .002; partial η2 = .014.), EHP-5 pain ( F (1, 651) = 4.114, p = .043; partial η2 = .006.), EHP-5 control and powerlessness ( F (1, 651) = 4.129, p = .043; partial η2 = .006.), and EHP-5 emotional wellbeing ( F (1, 651) = 4.310, p = .038; partial η2 = .007.) scores differed significantly between groups, as seen in Table 3. Participants in the suspected endometriosis group had higher mean pain, depression, anxiety, HRQoL pain, HRQoL control and powerlessness and HRQoL emotional wellbeing than the diagnosed groups. Table 3 Means, Standard Deviations, and One-Way Analyses of Variance in Pain, Psychological Distress and HRQoL Measure Diagnosed Suspected F (1,651) p Partial η2 M SD M SD Pain 5.3 2.6 6.1 2.3 8.427 .004 .013 DASS-21 Depression 13.89 5.7 15.2 5.5 4.658 .031 .007 Anxiety 12.49 4.6 14.03 4.8 9.437 .002 .014 EHP-5 Pain 2.57 1.1 2.81 1.0 4.114 .043 .006 Control & Powerlessness 3.18 1.3 3.46 1.1 4.129 .043 .006 Emotional Wellbeing 3.12 1.1 3.37 1.1 4.310 .038 .007 Social Support 3.59 1.21 3.79 1.08 2.466 .117 .004 Self-image 3.53 1.22 3.61 1.16 .369 .544 .001 Discussion The present study aimed to compare pain, psychological distress, and HRQoL in people with diagnosed and suspected endometriosis. The suspected endometriosis group had significantly higher pain and psychological distress, and poorer HRQoL than people who were diagnosed with endometriosis, supporting the hypothesis. The suspected endometriosis group showed significantly higher pain than the diagnosed group, similar to Gallicchio et al., ( 2015 ). This may represent a lack of adequate pain treatment occurring before formal diagnosis (Mosterd et al., 2025 ). Depression and anxiety symptom scores were significantly higher in the suspected endometriosis group compared to the diagnosed group, echoing previous findings (Arena et al., 2021 ). The suspected group also presented significantly poorer HRQoL pain, control and powerlessness, and emotional wellbeing, consistent with previous literature (Gallicchio et al., 2015 ). These differences may be associated with uncertainty during diagnostic delay, as described in the theory of uncertainty in illness (Mishel, 1990 ). The theory suggests that individuals cannot create meaning and define illness-related events due to a lack of information (Mishel, 1990 ). Yoon et al. ( 2021 ) suggests that diagnostic delays in endometriosis can cause these uncertainties. Our group differences may also represent a lack of validation associated with not having a formal diagnosis (Grundström et al., 2023). Validation involves supportive and non-dismissive communication and has been found to be important for people with pain conditions; patients feel understood, leading to increased emotional wellbeing, physical functioning and feelings of control over the condition (Grundström et al., 2023; Rowe et al., 2021 ). However, health care providers often do not validate pelvic pain until diagnosis (Mosterd et al., 2025 ). People with endometriosis often view medical professionals as ‘Powerful Others’ who have greater control over their lives and condition than themselves (Rotter, 1966 ), and therefore a lack of diagnosis or validation from their practitioner may explain impaired HRQoL control and powerlessness. Regarding the debate about whether endometriosis diagnosis provides benefit to patients, our findings suggest that diagnosis may play a role in pain, psychological wellbeing, and HRQoL, opposing the current views of the medical community (RANZCOG, 2025). This furthers the evidence that medical professionals should diagnose within a timely manner, provide adequate treatment as soon as possible, and validate patient experiences. The current research presents limitations in that the suspected group may not have endometriosis, but another condition (Armour et al., 2020 ). Some participants in the suspected group had received clinical or imaging-based diagnoses, however, did not consider themselves formally diagnosed, presenting a possible limitation of the survey questions or issues within the endometriosis medical and online communities. Future longitudinal studies of psychological wellbeing, pain and HRQoL with larger samples in both populations would be of interest, especially to assess whether changes occur post-diagnosis, with assessment of the mechanisms behind these changes. Conclusion People who are suspected to have endometriosis, appear to have increased pain and poorer psychological wellbeing and HRQoL than those who are diagnosed with endometriosis. These differences may occur due to uncertainty, invalidation of symptoms, and a lack of control over one’s own situation and treatment. Our data suggest that those with pelvic pain should receive both timely diagnosis and treatment as these are associated with improved wellbeing. Declarations Funding: Australian Government Research Training Program Clinical trial number: not applicable Competing Interests LVN is a member of the Endometriosis Australia Clinical Advisory Committee, this is a nonfinancial role Author Contribution DM, AMW, and SE contributed to the study conception and design. Data collection and analysis were performed by DM, with guidance from AMW, SE, LVN and DS. The first draft of the manuscript was written by DM and all authors commented on previous versions of the manuscript and read and approved the final manuscript. Acknowledgement The authors wish to acknowledge and thank the endometriosis organisations and Facebook pages who assisted in advertising this research, including Endo Active, EndoZone, Endometriosis Australia and the Pelvic Pain Foundation. The authors would also like to thank the participants of the study for generously sharing their time and experiences to complete the survey. Thank you to Jacqueline Mills and Katherine Stanley for their contributions to study design. Data Availability The data that support the findings of this study are not openly available due to reasons of sensitivity and are available from the corresponding author upon reasonable request. References Adler, H., Lewis, M., Ng, C. H. M., Brooks, C., Leonardi, M., Mikocka-Walus, A., Bush, D., Semprini, A., Wilkinson-Tomey, J., Condous, G., Patravali, N., Abbott, J., & Armour, M. (2024). Social media, endometriosis, and evidence-based information: An analysis of Instagram content. Healthcare , 12 , Article 1. https://doi.org/10.3390/healthcare12010121 Arena, A., Orsini, B., Degli Esposti, E., Manzara, F., Ambrosio, M., Raimondo, D., Lenzi, J., Casadio, P., & Seracchioli, R. (2021). The unbearable burden of endometriosis: Results from a large cohort about anxiety reduction during the first outpatient evaluation. Journal of Psychosomatic Research , 147 , 110512. https://doi.org/10.1016/j.jpsychores.2021.110512 Armour, M., Sinclair, J., Ng, C. H. M., Hyman, M. S., Lawson, K., Smith, C. A., & Abbott, J. (2020). Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: An Australian survey. Scientific Reports , 10 (1), 1–9. https://doi.org/10.1038/s41598-020-73389-2 Australian Institute of Health and Welfare. (2023). Endometriosis . Australian Institute of Health and Welfare. https://www.aihw.gov.au/reports/chronic-disease/endometriosis-in-australia/contents/summary-1 Ballard, K., Lowton, K., & Wright, J. (2006). What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertility and Sterility , 86 (5), 1296–1301. https://doi.org/10.1016/j.fertnstert.2006.04.054 Beloshevski, B., Shimshy-Kramer, M., Yekutiel, M., Levinsohn-Tavor, O., Eisenberg, N., & Smorgick, N. (2024a). Delayed diagnosis and treatment of adolescents and young women with suspected endometriosis. Journal of Gynecology Obstetrics and Human Reproduction , 102737. https://doi.org/10.1016/j.jogoh.2024.102737 Beloshevski, B., Shimshy-Kramer, M., Yekutiel, M., Levinsohn-Tavor, O., Eisenberg, N., & Smorgick, N. (2024b). Delayed diagnosis and treatment of adolescents and young women with suspected endometriosis. Journal of Gynecology Obstetrics and Human Reproduction , 102737. https://doi.org/10.1016/j.jogoh.2024.102737 Bylinka, J., & Oniszczenko, W. (2016). Temperament, Beliefs About Pain Control, and Pain Intensity in Endometriosis Patients. Journal of Clinical Psychology in Medical Settings , 23 (4), 410–419. https://doi.org/10.1007/s10880-016-9473-8 Cox, H., Henderson, L., Andersen, N., Cagliarini, G., & Ski, C. (2003). Focus group study of endometriosis: Struggle, loss and the medical merry-go-round. International Journal of Nursing Practice , 9 (1), Article 1. https://doi.org/10.1046/j.1440-172X.2003.00396.x De Corte, P., Klinghardt, M., von Stockum, S., & Heinemann, K. (2024). Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics—A Systematic Literature Review. BJOG: An International Journal of Obstetrics & Gynaecology , n/a (n/a). https://doi.org/10.1111/1471-0528.17973 Evans, S., Fernandez, S., Olive, L., Payne, L. A., & Mikocka-Walus, A. (2019). Psychological and mind-body interventions for endometriosis: A systematic review. Journal of Psychosomatic Research , 124 . https://doi.org/10.1016/j.jpsychores.2019.109756 Gallicchio, L., Helzlsouer, K. J., Audlin, K. M., Miller, C., MacDonald, R., Johnston, M., & Barrueto, F. F. (2015). Change in Pain and Quality of Life Among Women Enrolled in a Trial Examining the Use of Narrow Band Imaging During Laparoscopic Surgery for Suspected Endometriosis. Journal of Minimally Invasive Gynecology , 22 (7), 1208–1214. https://doi.org/10.1016/j.jmig.2015.06.017 Grundström, H., Engman ,Linnéa, Rimhagen ,Elin, Söderstierna ,Clara, & and Flink, I. (2023). Experiences of communication in women with endometriosis: Perceived validation and invalidation in different contexts, and associations with health-related quality of life. Journal of Psychosomatic Obstetrics & Gynecology , 44 (1), 2264483. https://doi.org/10.1080/0167482X.2023.2264483 Guerriero, S., Condous, G., van den Bosch, T., Valentin, L., Leone, F. P. G., Van Schoubroeck, D., Exacoustos, C., Installé, A. J. F., Martins, W. P., Abrao, M. S., Hudelist, G., Bazot, M., Alcazar, J. L., Gonçalves, M. O., Pascual, M. A., Ajossa, S., Savelli, L., Dunham, R., Reid, S., … Timmerman, D. (2016). Systematic approach to sonographic evaluation of the pelvis in women with suspected endometriosis, including terms, definitions and measurements: A consensus opinion from the International Deep Endometriosis Analysis (IDEA) group. Ultrasound in Obstetrics & Gynecology , 48 (3), 318–332. https://doi.org/10.1002/uog.15955 Jones, G., Jenkinson, C., & Kennedy, S. (2004). Development of the Short Form Endometriosis Health Profile Questionnaire: The EHP-5. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation , 13 (3), 695–704. https://doi.org/10.1023/B:QURE.0000021321.48041.0e Joseph, K., Kite, L., Grover, S., & Druitt, M. (2024). Worth waiting for? Australian and New Zealand Journal of Obstetrics and Gynaecology , 64 (5), 423–426. https://doi.org/10.1111/ajo.13869 Kvaskoff, M., Mahamat-Saleh, Y., Farland, L. V., Shigesi, N., Terry, K. L., Harris, H. R., Roman, H., Becker, C. M., As-Sanie, S., Zondervan, K. T., Horne, A. W., & Missmer, S. A. (2021). Endometriosis and cancer: A systematic review and meta-analysis. Human Reproduction Update , 27 (2), 393–420. https://doi.org/10.1093/humupd/dmaa045 Leonardi, M., Espada, M., Choi, S., Chou, D., Chang, T., Smith, C., Rowan, K., & Condous, G. (2020). Transvaginal ultrasound can accurately predict the American Society of Reproductive Medicine Stage of Endometriosis assigned at laparoscopy. Journal of Minimally Invasive Gynecology , 27 (7), 1581–1587. https://doi.org/10.1016/j.jmig.2020.02.014 Leonardi, M., Rocha, R., Tun-Ismail, A., Robledo, K., Armour, M., & Condous, G. (2021a). Assessing the knowledge of endometriosis diagnostic tools in a large, international lay population: An online survey. BJOG: An International Journal of Obstetrics & Gynaecology , 128 (13), Article 13. https://doi.org/10.1111/1471-0528.16865 Leonardi, M., Rocha, R., Tun-Ismail, A., Robledo, K., Armour, M., & Condous, G. (2021b). Assessing the knowledge of endometriosis diagnostic tools in a large, international lay population: An online survey. BJOG: An International Journal of Obstetrics & Gynaecology , 128 (13), 2084–2090. https://doi.org/10.1111/1471-0528.16865 Lovibond, S. H., & Lovibond, P. F. (1995). Manual for the Depression Anxiety & Stress Scales. (2nd Ed.). Sydney Psychology Foundation. Mak, J., Leonardi, M., & Condous, G. (2022). ‘Seeing is believing’: Arguing for diagnostic laparoscopy as a diagnostic test for endometriosis . https://doi.org/10.1530/RAF-21-0117 Mijatovic, V., & Vercellini, P. (2024). Towards comprehensive management of symptomatic endometriosis: Beyond the dichotomy of medical versus surgical treatment. Human Reproduction , 39 (3), 464–477. https://doi.org/10.1093/humrep/dead262 Mishel, M. H. (1990). Reconceptualization of the Uncertainty in Illness Theory. Image: The Journal of Nursing Scholarship , 22 (4), 256–262. https://doi.org/10.1111/j.1547-5069.1990.tb00225.x Mishra, G. D., Gete, D. G., Baneshi, M. R., Montgomery, G., Taylor, J., Doust, J., & Abbott, J. (2025). Patterns of health service use before and after diagnosis of endometriosis: A data linkage prospective cohort study. Human Reproduction , deaf026. https://doi.org/10.1093/humrep/deaf026 Mosterd, D., Evans, S., Van Niekerk, L., Skvarc, D., Leonardi, M., Stanley, K., & Mikocka-Walus, A. (2025). ‘A name to the pain’: A mixed methods analysis of diagnostic delay and perceptions of diagnosis importance in Australians with endometriosis. Journal of Psychosomatic Research , 193 , 112143. https://doi.org/10.1016/j.jpsychores.2025.112143 O’Hara, R., Rowe, H., & Fisher, J. (2020). Managing endometriosis: A cross-sectional survey of women in Australia. Journal of Psychosomatic Obstetrics & Gynecology . https://doi.org/10.1080/0167482X.2020.1825374 Parsa, S., Noroozpoor, R., Dehghanbanadaki, H., Khateri, S., & Moradi, Y. (2025). Endometriosis and risk of cardiovascular disease: A systematic review and meta-analysis. BMC Public Health , 25 (1), 245. https://doi.org/10.1186/s12889-025-21486-0 RANZCOG, T. R. A. and N. Z. C. of O. and G. (2025). Australian Living Evidence Guideline: Endometriosis . Rindos, N. B., Fulcher, I. R., & Donnellan, N. M. (2020). Pain and Quality of Life after Laparoscopic Excision of Endometriosis. Journal of Minimally Invasive Gynecology , 27 (7), 1610-1617.e1. https://doi.org/10.1016/j.jmig.2020.03.013 Rotter, J. B. (1966). Generalized expectancies for internal versus external control of reinforcement. Psychological Monographs: General and Applied , 80 (1), Article 1. https://doi.org/10.1037/h0092976 Rowe, H. J., Hammarberg, K., Dwyer, S., Camilleri, R., & Fisher, J. R. (2021). Improving clinical care for women with endometriosis: Qualitative analysis of women’s and health professionals’ views. Journal of Psychosomatic Obstetrics & Gynecology , 42 (3), Article 3. https://doi.org/10.1080/0167482X.2019.1678022 Surrey, E., Soliman, A. M., Trenz, H., Blauer-Peterson, C., & Sluis, A. (2020). Impact of Endometriosis Diagnostic Delays on Healthcare Resource Utilization and Costs. Advances in Therapy , 37 (3), Article 3. https://doi.org/10.1007/s12325-019-01215-x van der Zanden, M., Teunissen, D. A. M., van der Woord, I. W., Braat, D. D. M., Nelen, W. L. D. M., & Nap, A. W. (2020a). Barriers and facilitators to the timely diagnosis of endometriosis in primary care in the Netherlands. Family Practice , 37 (1), Article 1. https://doi.org/10.1093/fampra/cmz041 van der Zanden, M., Teunissen, D. A. M., van der Woord, I. W., Braat, D. D. M., Nelen, W. L. D. M., & Nap, A. W. (2020b). Barriers and facilitators to the timely diagnosis of endometriosis in primary care in the Netherlands. Family Practice , 37 (1), 131–136. https://doi.org/10.1093/fampra/cmz041 Wang, Y., Li, B., Zhou, Y., Wang, Y., Han, X., Zhang, S., He, Z., & Ouyang, L. (2021). Does Endometriosis Disturb Mental Health and Quality of Life? A Systematic Review and Meta-Analysis. GYNECOLOGIC AND OBSTETRIC INVESTIGATION , 86 (4), 315–335. https://doi.org/10.1159/000516517 Yoon, Y., Park, M.-A., & Park, S. (2021). Seeking adaptation from uncertainty: Coping strategies of South Korean women with endometriosis. Research in Nursing & Health , 44 (6), 970–978. https://doi.org/10.1002/nur.22186 Additional Declarations Competing interest reported. LVN is a member of the Endometriosis Australia Clinical Advisory Committee, this is a nonfinancial role 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. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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-6953959","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":476035173,"identity":"5587349d-3b15-4522-a09e-99222c77d3dd","order_by":0,"name":"Danielle Mosterd","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA8klEQVRIiWNgGAWjYDCCAxCKsZ8hgYGxwQDETiBCCxAzzmwgWcuGAyAtDERo4bt2+PDnDxX3ZDcfTz74cUbBHQZ+9hwDhp9tuLVI3k5Lkzhwpth425lnyZIbDJ4xSPa8MWDsxaPF4HaOGcPBtoTEbTdyDCQfGBxmMAAyGHjxazH+cPBfQuLmGfmff4K02AO1MP7Fr8VA4mBDQuIGiRw2oMOAtkjkGDDjswXslzPHEoxnnHlmZjnD4DCPxJlnBYdlzuHWwnc7+fCHipoE2f725Mc3e/4cluNvT9748E0Zbi0YgAdEHCBBwygYBaNgFIwCLAAABgZe5A/46dYAAAAASUVORK5CYII=","orcid":"","institution":"Deakin University","correspondingAuthor":true,"prefix":"","firstName":"Danielle","middleName":"","lastName":"Mosterd","suffix":""},{"id":476035175,"identity":"e97a5861-76d7-4e4e-86fa-4438a982efe6","order_by":1,"name":"Antonina Mikocka-Walus","email":"","orcid":"","institution":"Deakin University","correspondingAuthor":false,"prefix":"","firstName":"Antonina","middleName":"","lastName":"Mikocka-Walus","suffix":""},{"id":476035178,"identity":"d9e1e480-c213-46c0-a813-5b0e293a1678","order_by":2,"name":"Leesa Van Niekerk","email":"","orcid":"","institution":"University of Tasmania","correspondingAuthor":false,"prefix":"","firstName":"Leesa","middleName":"Van","lastName":"Niekerk","suffix":""},{"id":476035179,"identity":"9b1950fa-db1b-4441-b88d-2fcc4be23c9d","order_by":3,"name":"David Skvarc","email":"","orcid":"","institution":"Deakin University","correspondingAuthor":false,"prefix":"","firstName":"David","middleName":"","lastName":"Skvarc","suffix":""},{"id":476035180,"identity":"028c6b96-5981-44cc-aa5b-6d1816bba48b","order_by":4,"name":"Subhadra Evans","email":"","orcid":"","institution":"Deakin University","correspondingAuthor":false,"prefix":"","firstName":"Subhadra","middleName":"","lastName":"Evans","suffix":""}],"badges":[],"createdAt":"2025-06-23 07:38:17","currentVersionCode":1,"declarations":{"humanSubjects":false,"vertebrateSubjects":false,"conflictsOfInterestStatement":false,"humanSubjectEthicalGuidelines":false,"humanSubjectConsent":false,"humanSubjectClinicalTrial":false,"humanSubjectCaseReport":false,"vertebrateSubjectEthicalGuidelines":false},"doi":"10.21203/rs.3.rs-6953959/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6953959/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":98776061,"identity":"5e2a6b58-dd60-4c6c-9ad4-e991d6b7c71d","added_by":"auto","created_at":"2025-12-22 12:21:56","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":792748,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6953959/v1/24f12965-07d0-43c9-a94d-3b2ad5776088.pdf"}],"financialInterests":"Competing interest reported. LVN is a member of the Endometriosis Australia Clinical Advisory Committee, this is a nonfinancial role","formattedTitle":"\u003cp\u003eComparing psychological distress, health-related quality of life and pain in people diagnosed with endometriosis and those suspected to have endometriosis\u003c/p\u003e","fulltext":[{"header":"Article Highlights","content":"\u003cul\u003e\n \u003cli\u003ePeople suspected to have endometriosis reported greater pain and psychological distress than people diagnosed\u003c/li\u003e\n \u003cli\u003eThe suspected endometriosis group also reported poorer health-related quality of life than the diagnosed group\u003c/li\u003e\n \u003cli\u003eSuggesting that endometriosis diagnosis may reduce pain and psychological distress and increase quality of life\u003c/li\u003e\n\u003c/ul\u003e"},{"header":"Introduction","content":"\u003cp\u003eEndometriosis is an inflammatory condition affecting one in seven women and people assigned female at birth (AIHW, 2023). Current Australian data suggests endometriosis diagnosis takes between 6.4 and 12.4 years, which may be associated with disease progression and under-treatment (Mosterd et al., \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2025\u003c/span\u003e; O’Hara et al., \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). Due to difficulty accessing surgical or imaging-based diagnosis, some patients receive a temporary diagnosis of ‘suspected endometriosis’ (Gallicchio et al., \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2015\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eThe medical community is currently debating whether a prompt diagnosis of endometriosis is beneficial to patients, with The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG; 2025) stating there is insufficient evidence available. However, people with endometriosis have reported that diagnosis is important due to biopsychosocial benefits (Mosterd et al., \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2025\u003c/span\u003e). They have called for diagnosis and treatment to focus on psychological wellbeing and Health-Related Quality of Life (HRQoL), rather than solely pain management and fertility preservation (Rowe et al., \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2021\u003c/span\u003e)\u003c/p\u003e\u003cp\u003ePsychological distress is common in people with endometriosis, with a 1.86 times higher prevalence of depression symptoms and 2.38 times higher prevalence of anxiety symptoms than healthy controls (Wang et al., \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). A large study found reduced anxiety following diagnosis of endometriosis (Arena et al., \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). Similarly, HRQoL, encompassing physical, psychological and social impacts of a condition or its treatment, is greatly impaired in people with endometriosis (Wang et al., \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). Gallicchio et al. (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2015\u003c/span\u003e) found significant improvements in HRQoL and pain after diagnostic laparoscopic surgery.\u003c/p\u003e\u003cp\u003eCurrent data is lacking regarding the psychological wellbeing, pain and HRQoL of people suspected to have endometriosis, compared to those diagnosed. Such data may provide insights into the impact of diagnostic delay and contribute to the debate about whether diagnosis is beneficial. Therefore, the current study aims to compare pain, psychological wellbeing and HRQoL in people with endometriosis and those suspected to have endometriosis. It is hypothesised that people suspected to have endometriosis will have worse pain, psychological wellbeing and HRQoL than those diagnosed.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cb\u003eParticipants\u003c/b\u003e\u003c/p\u003e\u003cp\u003eParticipants were aged 18 years or older, resided in Australia, with a self-reported confirmed (\u003cem\u003en\u003c/em\u003e = 550) or suspected (\u003cem\u003en\u003c/em\u003e = 103) diagnosis of endometriosis.\u003c/p\u003e\u003cp\u003e\u003cb\u003eRecruitment\u003c/b\u003e\u003c/p\u003e\u003cp\u003eParticipants were recruited via the social media and websites of Australian endometriosis foundations and online support groups. Recruitment occurred from September to December 2023. This study received ethics approval from the Deakin University Human Research Ethics Committee (2023 − 251). Participation in the study was voluntary, with informed consent given and no compensation provided.\u003c/p\u003e\u003cp\u003e\u003cb\u003eMeasures\u003c/b\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eHealth and Demographic Information\u003c/b\u003e\u003c/p\u003e\u003cp\u003eDemographic data and endometriosis-characteristics were collected.\u003c/p\u003e\u003cp\u003e\u003cb\u003eReason for Suspected Diagnosis\u003c/b\u003e\u003c/p\u003e\u003cp\u003eParticipants with suspected endometriosis were asked “Why do you believe your endometriosis diagnosis has been delayed or taken a long time? Select all that apply”. Participants were provided with reasons based on common suggestions in past literature and a question asking to describe their diagnosis seeking journey or process. Results seen in Supplementary Material 1.\u003c/p\u003e\u003cp\u003e\u003cb\u003ePain\u003c/b\u003e\u003c/p\u003e\u003cp\u003ePain was assessed using a 10-point numerical scale, where participants were asked ‘Rate your endometriosis pain from 1–10 over the last 7 days’, with the scale ranging from 1 (\u003cem\u003epainless\u003c/em\u003e) to 10 (\u003cem\u003eworst pain imaginable\u003c/em\u003e).\u003c/p\u003e\u003cp\u003e\u003cb\u003ePsychological Wellbeing: Depression, Anxiety and Stress Scale (DASS-21)\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe Depression, Anxiety and Stress Scale (DASS-21; Lovibond \u0026amp; Lovibond, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e1995\u003c/span\u003e) is not diagnostic but indicates a participant’s level of depression, anxiety and stress symptoms over the last month, on a scale ranging from 0 (\u003cem\u003edid not apply to me at all\u003c/em\u003e) to 3 (\u003cem\u003every much or all the time\u003c/em\u003e). Higher scores reflect a greater level of distress.\u003c/p\u003e\u003cp\u003e\u003cb\u003eHealth-related Quality of Life: Endometriosis Health-Profile 5 (EHP-5)\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe Endometriosis Health Profile-5 (EHP-5) assesses the impact of endometriosis on everyday life (Jones et al., \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e2004\u003c/span\u003e).. The measures contain 5 questions measured on a 5-point Likert scale ranging from 0 (\u003cem\u003eNever)\u003c/em\u003e to 4 (\u003cem\u003eAlways\u003c/em\u003e), assessing pain, control and powerlessness, social support, emotional wellbeing and self-image. Higher scores reflect poorer HRQoL.\u003c/p\u003e\u003cp\u003e\u003cb\u003eAnalysis\u003c/b\u003e\u003c/p\u003e\u003cp\u003eA one-way multivariate analysis of variance (MANOVA) was conducted to determine the association of diagnosis status with pelvic pain, psychological distress and HRQoL. Preliminary assumption checking revealed that data was normally distributed, as assessed by visual inspection of QQ plots and there were linear relationships, as assessed by scatterplots. Stress showed multicollinearity within the DASS-21, correlating highly with the subscales of depression (r = .713, p \u0026lt; .001) and anxiety (r = .731, p \u0026lt; .001), and was removed from the model. There was homogeneity of variance-covariance matrices, as assessed by Box's M test (p = .185). There were a small number of univariate and multivariate outliers, as assessed by boxplot and Mahalanobis distance (\u003cem\u003ep\u003c/em\u003e \u0026gt; .001), respectively, which were not removed or transformed due to their small number. Follow up univariate ANOVAs were conducted to examine group differences.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003e\u003cem\u003eEthics\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study received ethics approval from the Deakin University Human Research Ethics Committee (2023-251). Participation in the study was completely voluntary, with informed consent given and no compensation provided.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cstrong\u003eDemographics\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe sample had a mean age of 34 years, with participants predominantly identifying as women (95.9%), of Western ethnicity (93%), with 3.1% of the sample being of Aboriginal ethnicity (see Table 1). Demographics of each group are included in Table 1.\u003c/p\u003e\n\u003cp\u003eThe diagnosed group experienced a mean diagnostic delay of 12.31 (\u003cem\u003eSD\u003c/em\u003e = 7.6) years, ranging from 0 to 37 years. Most of this group were diagnosed via laparoscopy (86.4%), with the next most common method being ultrasound (10%).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1\u0026nbsp;\u003c/strong\u003e\u003cem\u003eSample Descriptives\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDiagnosed\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSuspected\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u003cem\u003eM (SD)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003eRange\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e\u003cem\u003eM (SD)\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 72px;\"\u003e\n \u003cp\u003eRange\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003eAge\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e34.55 (8.179)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e18 - 63\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e31.05 (6.786)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 72px;\"\u003e\n \u003cp\u003e19 \u0026ndash; 46\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 66px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 72px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eFrequency (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eFrequency (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003eGender\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eWoman\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e524 (95.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e102 (99)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eTrans Man\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e2 (.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e1 (1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eNon-binary\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e19 (3.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eGender Fluid\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e3 (.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003ePrefer not to answer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e2 (.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003eSexual Orientation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e417 (75.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e69 (67)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eQueer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e125 (22.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e32 (31.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003ePrefer not to answer\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e8 (1.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e2 (1.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003eAboriginal Identity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eAboriginal\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e15 (2.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e5 (4.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e535 (97.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e98 (95.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003eEthnicity\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eWestern\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e509 (92.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e98 (95.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eNon-Western\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e41 (7.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e5 (4.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003eRegion\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eMetropolitan\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e357 (64.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e62 (60.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eRegional and Remote\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e193 (35.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e41 (39.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003ePrivate Health Insurance\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e409 (74.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e61 (59.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e141 (25.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e42 (40.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003eEmployment\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eFull-time\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e262 (47.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e56 (54.4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eOther work (PT, casual)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e199 (36.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e32 (31.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eNo paid work\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e89 (16.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e15 (14.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003eChildren\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e345 (62.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e85 (82.5)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eYes, biological\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e193 (35.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e15 (14.6)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 95px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 151px;\"\u003e\n \u003cp\u003eYes, non-biological\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 161px;\"\u003e\n \u003cp\u003e12 (2.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"top\" style=\"width: 176px;\"\u003e\n \u003cp\u003e3 (2.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eReason for Suspected Diagnosis\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe most predominant reason that participants reported for having a suspected diagnosis, rather than formal diagnosis, was dismissal of symptoms by previous medical professionals (73.8%). In other cases, difficulties paying for medical appointments, tests and surgeries prevented participants from getting diagnosed (32.0%) and long wait times for gynaecologist appointments (31.1%) and surgery (27.2%) contributed to a suspected diagnosis. Participants most commonly selected one (\u003cem\u003en\u003c/em\u003e= 29, 28.2% of suspected group), two (\u003cem\u003en\u003c/em\u003e = 25, 24.3%), or three (\u003cem\u003en\u003c/em\u003e= 26, 25.2%) reasons for why they have a suspected diagnosis. The reasons and frequency are described in Table 2.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2\u0026nbsp;\u003c/strong\u003e\u003cem\u003eReasons for Suspected Diagnosis/Currently Experiencing Diagnostic Delay\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 491px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eExperience\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eN (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 491px;\"\u003e\n \u003cp\u003eDoctor/s dismissed my symptoms for some time\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e76 (73.8%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 491px;\"\u003e\n \u003cp\u003eI have financial difficulties paying for appointments, surgeries etc.\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e33 (32.0%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 491px;\"\u003e\n \u003cp\u003eI am waiting for gynaecologist/surgeon appointment\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e32 (31.1%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 491px;\"\u003e\n \u003cp\u003eI am waiting for surgery\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e28 (27.2%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 491px;\"\u003e\n \u003cp\u003eI can manage symptoms without formal diagnosis or am content with a suspected diagnosis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e20 (19.4%)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 491px;\"\u003e\n \u003cp\u003eI can\u0026rsquo;t have surgery due to commitments (e.g., family, work)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e17 (16.5%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 491px;\"\u003e\n \u003cp\u003eI don\u0026rsquo;t want surgery\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e9 (8.7%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 491px;\"\u003e\n \u003cp\u003eI received diagnosis via imaging or a clinical diagnosis, however, I want further surgical confirmation\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e7 (6.8%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 491px;\"\u003e\n \u003cp\u003eDoctor suspected endometriosis based on family history\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 104px;\"\u003e\n \u003cp\u003e5 (4.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eComparing Psychological Wellbeing, Pain and HRQoL\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThere was a statistically significant difference between groups on psychological wellbeing, pain and HRQoL, \u003cem\u003eF\u003c/em\u003e(8, 644) = 2.024, \u003cem\u003ep\u003c/em\u003e .041; Pillai\u0026rsquo;s Trace = .25; partial \u0026eta;2 = .025. Follow-up univariate ANOVAs showed that pelvic pain (\u003cem\u003eF\u003c/em\u003e(1, 651) = 8.427, \u003cem\u003ep\u003c/em\u003e = .004; partial \u0026eta;2 = .013), depression (\u003cem\u003eF\u003c/em\u003e(1, 651) = 4.658, \u003cem\u003ep\u003c/em\u003e = .031; partial \u0026eta;2 = .007.), anxiety (\u003cem\u003eF\u003c/em\u003e(1, 651) = 9.437, \u003cem\u003ep\u003c/em\u003e = .002; partial \u0026eta;2 = .014.), EHP-5 pain (\u003cem\u003eF\u003c/em\u003e(1, 651) = 4.114, \u003cem\u003ep\u003c/em\u003e = .043; partial \u0026eta;2 = .006.), EHP-5 control and powerlessness (\u003cem\u003eF\u003c/em\u003e(1, 651) = 4.129, \u003cem\u003ep\u003c/em\u003e = .043; partial \u0026eta;2 = .006.), and EHP-5 emotional wellbeing (\u003cem\u003eF\u003c/em\u003e(1, 651) = 4.310, \u003cem\u003ep\u003c/em\u003e = .038; partial \u0026eta;2 = .007.) scores differed significantly between groups, as seen in Table 3. Participants in the suspected endometriosis group had higher mean pain, depression, anxiety, HRQoL pain, HRQoL control and powerlessness and HRQoL emotional wellbeing than the diagnosed groups.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3\u0026nbsp;\u003c/strong\u003e\u003cem\u003eMeans, Standard Deviations, and One-Way Analyses of Variance in Pain, Psychological Distress and HRQoL\u003c/em\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"614\" class=\"fr-table-selection-hover\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"bottom\" style=\"width: 196px;\"\u003e\n \u003cp\u003eMeasure\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"bottom\" style=\"width: 114px;\"\u003e\n \u003cp\u003eDiagnosed\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd colspan=\"2\" valign=\"bottom\" style=\"width: 111px;\"\u003e\n \u003cp\u003eSuspected\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 69px;\"\u003e\n \u003cp\u003e\u003cem\u003eF\u003c/em\u003e(1,651)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 48px;\"\u003e\n \u003cp\u003e\u003cem\u003ep\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 75px;\"\u003e\n \u003cp\u003ePartial \u0026eta;2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 196px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 60px;\"\u003e\n \u003cp\u003e\u003cem\u003eM\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 54px;\"\u003e\n \u003cp\u003e\u003cem\u003eSD\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 56px;\"\u003e\n \u003cp\u003e\u003cem\u003eM\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 55px;\"\u003e\n \u003cp\u003e\u003cem\u003eSD\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 69px;\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 48px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 75px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 196px;\"\u003e\n \u003cp\u003ePain\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 60px;\"\u003e\n \u003cp\u003e5.3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 54px;\"\u003e\n \u003cp\u003e2.6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 56px;\"\u003e\n \u003cp\u003e6.1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 55px;\"\u003e\n \u003cp\u003e2.3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 69px;\"\u003e\n \u003cp\u003e8.427\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 48px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e.004\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 75px;\"\u003e\n \u003cp\u003e.013\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 196px;\"\u003e\n \u003cp\u003eDASS-21\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 60px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 54px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 56px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 55px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 69px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 48px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 75px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 196px;\"\u003e\n \u003cp\u003eDepression\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 60px;\"\u003e\n \u003cp\u003e13.89\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 54px;\"\u003e\n \u003cp\u003e5.7\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 56px;\"\u003e\n \u003cp\u003e15.2\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 55px;\"\u003e\n \u003cp\u003e5.5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 69px;\"\u003e\n \u003cp\u003e4.658\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 48px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e.031\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 75px;\"\u003e\n \u003cp\u003e.007\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 196px;\"\u003e\n \u003cp\u003eAnxiety\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 60px;\"\u003e\n \u003cp\u003e12.49\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 54px;\"\u003e\n \u003cp\u003e4.6\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 56px;\"\u003e\n \u003cp\u003e14.03\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 55px;\"\u003e\n \u003cp\u003e4.8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 69px;\"\u003e\n \u003cp\u003e9.437\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 48px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e.002\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd style=\"width: 75px;\"\u003e\n \u003cp\u003e.014\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 196px;\"\u003e\n \u003cp\u003eEHP-5\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 60px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 54px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 55px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 48px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 75px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 196px;\"\u003e\n \u003cp\u003ePain\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 60px;\"\u003e\n \u003cp\u003e2.57\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 54px;\"\u003e\n \u003cp\u003e1.1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e2.81\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 55px;\"\u003e\n \u003cp\u003e1.0\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e4.114\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 48px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e.043\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 75px;\"\u003e\n \u003cp\u003e.006\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 196px;\"\u003e\n \u003cp\u003eControl \u0026amp; Powerlessness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 60px;\"\u003e\n \u003cp\u003e3.18\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 54px;\"\u003e\n \u003cp\u003e1.3\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e3.46\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 55px;\"\u003e\n \u003cp\u003e1.1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e4.129\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 48px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e.043\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 75px;\"\u003e\n \u003cp\u003e.006\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 196px;\"\u003e\n \u003cp\u003eEmotional Wellbeing\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 60px;\"\u003e\n \u003cp\u003e3.12\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 54px;\"\u003e\n \u003cp\u003e1.1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e3.37\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 55px;\"\u003e\n \u003cp\u003e1.1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 69px;\"\u003e\n \u003cp\u003e4.310\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 48px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e.038\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 75px;\"\u003e\n \u003cp\u003e.007\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 196px;\"\u003e\n \u003cp\u003eSocial Support\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 60px;\"\u003e\n \u003cp\u003e3.59\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 54px;\"\u003e\n \u003cp\u003e1.21\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e3.79\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 55px;\"\u003e\n \u003cp\u003e1.08\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 69px;\"\u003e\n \u003cp\u003e2.466\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 48px;\"\u003e\n \u003cp\u003e.117\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 75px;\"\u003e\n \u003cp\u003e.004\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd style=\"width: 196px;\"\u003e\n \u003cp\u003eSelf-image\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 60px;\"\u003e\n \u003cp\u003e3.53\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 54px;\"\u003e\n \u003cp\u003e1.22\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 56px;\"\u003e\n \u003cp\u003e3.61\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 55px;\"\u003e\n \u003cp\u003e1.16\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 69px;\"\u003e\n \u003cp\u003e.369\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 48px;\"\u003e\n \u003cp\u003e.544\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"bottom\" style=\"width: 75px;\"\u003e\n \u003cp\u003e.001\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe present study aimed to compare pain, psychological distress, and HRQoL in people with diagnosed and suspected endometriosis. The suspected endometriosis group had significantly higher pain and psychological distress, and poorer HRQoL than people who were diagnosed with endometriosis, supporting the hypothesis.\u003c/p\u003e\u003cp\u003eThe suspected endometriosis group showed significantly higher pain than the diagnosed group, similar to Gallicchio et al., (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2015\u003c/span\u003e). This may represent a lack of adequate pain treatment occurring before formal diagnosis (Mosterd et al., \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2025\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eDepression and anxiety symptom scores were significantly higher in the suspected endometriosis group compared to the diagnosed group, echoing previous findings (Arena et al., \u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). The suspected group also presented significantly poorer HRQoL pain, control and powerlessness, and emotional wellbeing, consistent with previous literature (Gallicchio et al., \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2015\u003c/span\u003e). These differences may be associated with uncertainty during diagnostic delay, as described in the theory of uncertainty in illness (Mishel, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e1990\u003c/span\u003e). The theory suggests that individuals cannot create meaning and define illness-related events due to a lack of information (Mishel, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e1990\u003c/span\u003e). Yoon et al. (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e2021\u003c/span\u003e) suggests that diagnostic delays in endometriosis can cause these uncertainties. Our group differences may also represent a lack of validation associated with not having a formal diagnosis (Grundstr\u0026ouml;m et al., 2023). Validation involves supportive and non-dismissive communication and has been found to be important for people with pain conditions; patients feel understood, leading to increased emotional wellbeing, physical functioning and feelings of control over the condition (Grundstr\u0026ouml;m et al., 2023; Rowe et al., \u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e2021\u003c/span\u003e). However, health care providers often do not validate pelvic pain until diagnosis (Mosterd et al., \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e2025\u003c/span\u003e). People with endometriosis often view medical professionals as \u0026lsquo;Powerful Others\u0026rsquo; who have greater control over their lives and condition than themselves (Rotter, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e1966\u003c/span\u003e), and therefore a lack of diagnosis or validation from their practitioner may explain impaired HRQoL control and powerlessness.\u003c/p\u003e\u003cp\u003eRegarding the debate about whether endometriosis diagnosis provides benefit to patients, our findings suggest that diagnosis may play a role in pain, psychological wellbeing, and HRQoL, opposing the current views of the medical community (RANZCOG, 2025). This furthers the evidence that medical professionals should diagnose within a timely manner, provide adequate treatment as soon as possible, and validate patient experiences.\u003c/p\u003e\u003cp\u003eThe current research presents limitations in that the suspected group may not have endometriosis, but another condition (Armour et al., \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). Some participants in the suspected group had received clinical or imaging-based diagnoses, however, did not consider themselves formally diagnosed, presenting a possible limitation of the survey questions or issues within the endometriosis medical and online communities. Future longitudinal studies of psychological wellbeing, pain and HRQoL with larger samples in both populations would be of interest, especially to assess whether changes occur post-diagnosis, with assessment of the mechanisms behind these changes.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003ePeople who are suspected to have endometriosis, appear to have increased pain and poorer psychological wellbeing and HRQoL than those who are diagnosed with endometriosis. These differences may occur due to uncertainty, invalidation of symptoms, and a lack of control over one\u0026rsquo;s own situation and treatment. Our data suggest that those with pelvic pain should receive both timely diagnosis and treatment as these are associated with improved wellbeing.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eFunding:\u0026nbsp;\u003c/strong\u003eAustralian Government Research Training Program\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eClinical trial number:\u003c/strong\u003e not applicable\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eCompeting Interests\u003c/strong\u003e\u003cp\u003eLVN is a member of the Endometriosis Australia Clinical Advisory Committee, this is a nonfinancial role\u003c/p\u003e\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eDM, AMW, and SE contributed to the study conception and design. Data collection and analysis were performed by DM, with guidance from AMW, SE, LVN and DS. The first draft of the manuscript was written by DM and all authors commented on previous versions of the manuscript and read and approved the final manuscript.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eThe authors wish to acknowledge and thank the endometriosis organisations and Facebook pages who assisted in advertising this research, including Endo Active, EndoZone, Endometriosis Australia and the Pelvic Pain Foundation. The authors would also like to thank the participants of the study for generously sharing their time and experiences to complete the survey. Thank you to Jacqueline Mills and Katherine Stanley for their contributions to study design.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eThe data that support the findings of this study are not openly available due to reasons of sensitivity and are available from the corresponding author upon reasonable request.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eAdler, H., Lewis, M., Ng, C. H. M., Brooks, C., Leonardi, M., Mikocka-Walus, A., Bush, D., Semprini, A., Wilkinson-Tomey, J., Condous, G., Patravali, N., Abbott, J., \u0026amp; Armour, M. (2024). Social media, endometriosis, and evidence-based information: An analysis of Instagram content. \u003cem\u003eHealthcare\u003c/em\u003e, \u003cem\u003e12\u003c/em\u003e, Article 1. https://doi.org/10.3390/healthcare12010121\u003c/li\u003e\n\u003cli\u003eArena, A., Orsini, B., Degli Esposti, E., Manzara, F., Ambrosio, M., Raimondo, D., Lenzi, J., Casadio, P., \u0026amp; Seracchioli, R. (2021). The unbearable burden of endometriosis: Results from a large cohort about anxiety reduction during the first outpatient evaluation. \u003cem\u003eJournal of Psychosomatic Research\u003c/em\u003e, \u003cem\u003e147\u003c/em\u003e, 110512. https://doi.org/10.1016/j.jpsychores.2021.110512\u003c/li\u003e\n\u003cli\u003eArmour, M., Sinclair, J., Ng, C. H. M., Hyman, M. S., Lawson, K., Smith, C. A., \u0026amp; Abbott, J. (2020). Endometriosis and chronic pelvic pain have similar impact on women, but time to diagnosis is decreasing: An Australian survey. \u003cem\u003eScientific Reports\u003c/em\u003e, \u003cem\u003e10\u003c/em\u003e(1), 1\u0026ndash;9. https://doi.org/10.1038/s41598-020-73389-2\u003c/li\u003e\n\u003cli\u003eAustralian Institute of Health and Welfare. (2023). \u003cem\u003eEndometriosis\u003c/em\u003e. Australian Institute of Health and Welfare. https://www.aihw.gov.au/reports/chronic-disease/endometriosis-in-australia/contents/summary-1\u003c/li\u003e\n\u003cli\u003eBallard, K., Lowton, K., \u0026amp; Wright, J. (2006). What\u0026rsquo;s the delay? A qualitative study of women\u0026rsquo;s experiences of reaching a diagnosis of endometriosis. \u003cem\u003eFertility and Sterility\u003c/em\u003e, \u003cem\u003e86\u003c/em\u003e(5), 1296\u0026ndash;1301. https://doi.org/10.1016/j.fertnstert.2006.04.054\u003c/li\u003e\n\u003cli\u003eBeloshevski, B., Shimshy-Kramer, M., Yekutiel, M., Levinsohn-Tavor, O., Eisenberg, N., \u0026amp; Smorgick, N. (2024a). Delayed diagnosis and treatment of adolescents and young women with suspected endometriosis. \u003cem\u003eJournal of Gynecology Obstetrics and Human Reproduction\u003c/em\u003e, 102737. https://doi.org/10.1016/j.jogoh.2024.102737\u003c/li\u003e\n\u003cli\u003eBeloshevski, B., Shimshy-Kramer, M., Yekutiel, M., Levinsohn-Tavor, O., Eisenberg, N., \u0026amp; Smorgick, N. (2024b). Delayed diagnosis and treatment of adolescents and young women with suspected endometriosis. \u003cem\u003eJournal of Gynecology Obstetrics and Human Reproduction\u003c/em\u003e, 102737. https://doi.org/10.1016/j.jogoh.2024.102737\u003c/li\u003e\n\u003cli\u003eBylinka, J., \u0026amp; Oniszczenko, W. (2016). Temperament, Beliefs About Pain Control, and Pain Intensity in Endometriosis Patients. \u003cem\u003eJournal of Clinical Psychology in Medical Settings\u003c/em\u003e, \u003cem\u003e23\u003c/em\u003e(4), 410\u0026ndash;419. https://doi.org/10.1007/s10880-016-9473-8\u003c/li\u003e\n\u003cli\u003eCox, H., Henderson, L., Andersen, N., Cagliarini, G., \u0026amp; Ski, C. (2003). Focus group study of endometriosis: Struggle, loss and the medical merry-go-round. \u003cem\u003eInternational Journal of Nursing Practice\u003c/em\u003e, \u003cem\u003e9\u003c/em\u003e(1), Article 1. https://doi.org/10.1046/j.1440-172X.2003.00396.x\u003c/li\u003e\n\u003cli\u003eDe Corte, P., Klinghardt, M., von Stockum, S., \u0026amp; Heinemann, K. (2024). Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics\u0026mdash;A Systematic Literature Review. \u003cem\u003eBJOG: An International Journal of Obstetrics \u0026amp; Gynaecology\u003c/em\u003e, \u003cem\u003en/a\u003c/em\u003e(n/a). https://doi.org/10.1111/1471-0528.17973\u003c/li\u003e\n\u003cli\u003eEvans, S., Fernandez, S., Olive, L., Payne, L. A., \u0026amp; Mikocka-Walus, A. (2019). Psychological and mind-body interventions for endometriosis: A systematic review. \u003cem\u003eJournal of Psychosomatic Research\u003c/em\u003e, \u003cem\u003e124\u003c/em\u003e. https://doi.org/10.1016/j.jpsychores.2019.109756\u003c/li\u003e\n\u003cli\u003eGallicchio, L., Helzlsouer, K. J., Audlin, K. M., Miller, C., MacDonald, R., Johnston, M., \u0026amp; Barrueto, F. F. (2015). Change in Pain and Quality of Life Among Women Enrolled in a Trial Examining the Use of Narrow Band Imaging During Laparoscopic Surgery for Suspected Endometriosis. \u003cem\u003eJournal of Minimally Invasive Gynecology\u003c/em\u003e, \u003cem\u003e22\u003c/em\u003e(7), 1208\u0026ndash;1214. https://doi.org/10.1016/j.jmig.2015.06.017\u003c/li\u003e\n\u003cli\u003eGrundstr\u0026ouml;m, H., Engman ,Linn\u0026eacute;a, Rimhagen ,Elin, S\u0026ouml;derstierna ,Clara, \u0026amp; and Flink, I. (2023). Experiences of communication in women with endometriosis: Perceived validation and invalidation in different contexts, and associations with health-related quality of life. \u003cem\u003eJournal of Psychosomatic Obstetrics \u0026amp; Gynecology\u003c/em\u003e, \u003cem\u003e44\u003c/em\u003e(1), 2264483. https://doi.org/10.1080/0167482X.2023.2264483\u003c/li\u003e\n\u003cli\u003eGuerriero, S., Condous, G., van den Bosch, T., Valentin, L., Leone, F. P. G., Van Schoubroeck, D., Exacoustos, C., Install\u0026eacute;, A. J. F., Martins, W. P., Abrao, M. S., Hudelist, G., Bazot, M., Alcazar, J. L., Gon\u0026ccedil;alves, M. O., Pascual, M. A., Ajossa, S., Savelli, L., Dunham, R., Reid, S., \u0026hellip; Timmerman, D. (2016). Systematic approach to sonographic evaluation of the pelvis in women with suspected endometriosis, including terms, definitions and measurements: A consensus opinion from the International Deep Endometriosis Analysis (IDEA) group. \u003cem\u003eUltrasound in Obstetrics \u0026amp; Gynecology\u003c/em\u003e, \u003cem\u003e48\u003c/em\u003e(3), 318\u0026ndash;332. https://doi.org/10.1002/uog.15955\u003c/li\u003e\n\u003cli\u003eJones, G., Jenkinson, C., \u0026amp; Kennedy, S. (2004). Development of the Short Form Endometriosis Health Profile Questionnaire: The EHP-5. \u003cem\u003eQuality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation\u003c/em\u003e, \u003cem\u003e13\u003c/em\u003e(3), 695\u0026ndash;704. https://doi.org/10.1023/B:QURE.0000021321.48041.0e\u003c/li\u003e\n\u003cli\u003eJoseph, K., Kite, L., Grover, S., \u0026amp; Druitt, M. (2024). Worth waiting for? \u003cem\u003eAustralian and New Zealand Journal of Obstetrics and Gynaecology\u003c/em\u003e, \u003cem\u003e64\u003c/em\u003e(5), 423\u0026ndash;426. https://doi.org/10.1111/ajo.13869\u003c/li\u003e\n\u003cli\u003eKvaskoff, M., Mahamat-Saleh, Y., Farland, L. V., Shigesi, N., Terry, K. L., Harris, H. R., Roman, H., Becker, C. M., As-Sanie, S., Zondervan, K. T., Horne, A. W., \u0026amp; Missmer, S. A. (2021). Endometriosis and cancer: A systematic review and meta-analysis. \u003cem\u003eHuman Reproduction Update\u003c/em\u003e, \u003cem\u003e27\u003c/em\u003e(2), 393\u0026ndash;420. https://doi.org/10.1093/humupd/dmaa045\u003c/li\u003e\n\u003cli\u003eLeonardi, M., Espada, M., Choi, S., Chou, D., Chang, T., Smith, C., Rowan, K., \u0026amp; Condous, G. (2020). Transvaginal ultrasound can accurately predict the American Society of Reproductive Medicine Stage of Endometriosis assigned at laparoscopy. \u003cem\u003eJournal of Minimally Invasive Gynecology\u003c/em\u003e, \u003cem\u003e27\u003c/em\u003e(7), 1581\u0026ndash;1587. https://doi.org/10.1016/j.jmig.2020.02.014\u003c/li\u003e\n\u003cli\u003eLeonardi, M., Rocha, R., Tun-Ismail, A., Robledo, K., Armour, M., \u0026amp; Condous, G. (2021a). Assessing the knowledge of endometriosis diagnostic tools in a large, international lay population: An online survey. \u003cem\u003eBJOG: An International Journal of Obstetrics \u0026amp; Gynaecology\u003c/em\u003e, \u003cem\u003e128\u003c/em\u003e(13), Article 13. https://doi.org/10.1111/1471-0528.16865\u003c/li\u003e\n\u003cli\u003eLeonardi, M., Rocha, R., Tun-Ismail, A., Robledo, K., Armour, M., \u0026amp; Condous, G. (2021b). Assessing the knowledge of endometriosis diagnostic tools in a large, international lay population: An online survey. \u003cem\u003eBJOG: An International Journal of Obstetrics \u0026amp; Gynaecology\u003c/em\u003e, \u003cem\u003e128\u003c/em\u003e(13), 2084\u0026ndash;2090. https://doi.org/10.1111/1471-0528.16865\u003c/li\u003e\n\u003cli\u003eLovibond, S. H., \u0026amp; Lovibond, P. F. (1995). Manual for the Depression Anxiety \u0026amp; Stress Scales. (2nd Ed.). \u003cem\u003eSydney Psychology Foundation.\u003c/em\u003e\u003c/li\u003e\n\u003cli\u003eMak, J., Leonardi, M., \u0026amp; Condous, G. (2022). \u003cem\u003e\u0026lsquo;Seeing is believing\u0026rsquo;: Arguing for diagnostic laparoscopy as a diagnostic test for endometriosis\u003c/em\u003e. https://doi.org/10.1530/RAF-21-0117\u003c/li\u003e\n\u003cli\u003eMijatovic, V., \u0026amp; Vercellini, P. (2024). Towards comprehensive management of symptomatic endometriosis: Beyond the dichotomy of medical versus surgical treatment. \u003cem\u003eHuman Reproduction\u003c/em\u003e, \u003cem\u003e39\u003c/em\u003e(3), 464\u0026ndash;477. https://doi.org/10.1093/humrep/dead262\u003c/li\u003e\n\u003cli\u003eMishel, M. H. (1990). Reconceptualization of the Uncertainty in Illness Theory. \u003cem\u003eImage: The Journal of Nursing Scholarship\u003c/em\u003e, \u003cem\u003e22\u003c/em\u003e(4), 256\u0026ndash;262. https://doi.org/10.1111/j.1547-5069.1990.tb00225.x\u003c/li\u003e\n\u003cli\u003eMishra, G. D., Gete, D. G., Baneshi, M. R., Montgomery, G., Taylor, J., Doust, J., \u0026amp; Abbott, J. (2025). Patterns of health service use before and after diagnosis of endometriosis: A data linkage prospective cohort study. \u003cem\u003eHuman Reproduction\u003c/em\u003e, deaf026. https://doi.org/10.1093/humrep/deaf026\u003c/li\u003e\n\u003cli\u003eMosterd, D., Evans, S., Van Niekerk, L., Skvarc, D., Leonardi, M., Stanley, K., \u0026amp; Mikocka-Walus, A. (2025). \u0026lsquo;A name to the pain\u0026rsquo;: A mixed methods analysis of diagnostic delay and perceptions of diagnosis importance in Australians with endometriosis. \u003cem\u003eJournal of Psychosomatic Research\u003c/em\u003e, \u003cem\u003e193\u003c/em\u003e, 112143. https://doi.org/10.1016/j.jpsychores.2025.112143\u003c/li\u003e\n\u003cli\u003eO\u0026rsquo;Hara, R., Rowe, H., \u0026amp; Fisher, J. (2020). Managing endometriosis: A cross-sectional survey of women in Australia. \u003cem\u003eJournal of Psychosomatic Obstetrics \u0026amp; Gynecology\u003c/em\u003e. https://doi.org/10.1080/0167482X.2020.1825374\u003c/li\u003e\n\u003cli\u003eParsa, S., Noroozpoor, R., Dehghanbanadaki, H., Khateri, S., \u0026amp; Moradi, Y. (2025). Endometriosis and risk of cardiovascular disease: A systematic review and meta-analysis. \u003cem\u003eBMC Public Health\u003c/em\u003e, \u003cem\u003e25\u003c/em\u003e(1), 245. https://doi.org/10.1186/s12889-025-21486-0\u003c/li\u003e\n\u003cli\u003eRANZCOG, T. R. A. and N. Z. C. of O. and G. (2025). \u003cem\u003eAustralian Living Evidence Guideline: Endometriosis\u003c/em\u003e.\u003c/li\u003e\n\u003cli\u003eRindos, N. B., Fulcher, I. R., \u0026amp; Donnellan, N. M. (2020). Pain and Quality of Life after Laparoscopic Excision of Endometriosis. \u003cem\u003eJournal of Minimally Invasive Gynecology\u003c/em\u003e, \u003cem\u003e27\u003c/em\u003e(7), 1610-1617.e1. https://doi.org/10.1016/j.jmig.2020.03.013\u003c/li\u003e\n\u003cli\u003eRotter, J. B. (1966). Generalized expectancies for internal versus external control of reinforcement. \u003cem\u003ePsychological Monographs: General and Applied\u003c/em\u003e, \u003cem\u003e80\u003c/em\u003e(1), Article 1. https://doi.org/10.1037/h0092976\u003c/li\u003e\n\u003cli\u003eRowe, H. J., Hammarberg, K., Dwyer, S., Camilleri, R., \u0026amp; Fisher, J. R. (2021). Improving clinical care for women with endometriosis: Qualitative analysis of women\u0026rsquo;s and health professionals\u0026rsquo; views. \u003cem\u003eJournal of Psychosomatic Obstetrics \u0026amp; Gynecology\u003c/em\u003e, \u003cem\u003e42\u003c/em\u003e(3), Article 3. https://doi.org/10.1080/0167482X.2019.1678022\u003c/li\u003e\n\u003cli\u003eSurrey, E., Soliman, A. M., Trenz, H., Blauer-Peterson, C., \u0026amp; Sluis, A. (2020). Impact of Endometriosis Diagnostic Delays on Healthcare Resource Utilization and Costs. \u003cem\u003eAdvances in Therapy\u003c/em\u003e, \u003cem\u003e37\u003c/em\u003e(3), Article 3. https://doi.org/10.1007/s12325-019-01215-x\u003c/li\u003e\n\u003cli\u003evan der Zanden, M., Teunissen, D. A. M., van der Woord, I. W., Braat, D. D. M., Nelen, W. L. D. M., \u0026amp; Nap, A. W. (2020a). Barriers and facilitators to the timely diagnosis of endometriosis in primary care in the Netherlands. \u003cem\u003eFamily Practice\u003c/em\u003e, \u003cem\u003e37\u003c/em\u003e(1), Article 1. https://doi.org/10.1093/fampra/cmz041\u003c/li\u003e\n\u003cli\u003evan der Zanden, M., Teunissen, D. A. M., van der Woord, I. W., Braat, D. D. M., Nelen, W. L. D. M., \u0026amp; Nap, A. W. (2020b). Barriers and facilitators to the timely diagnosis of endometriosis in primary care in the Netherlands. \u003cem\u003eFamily Practice\u003c/em\u003e, \u003cem\u003e37\u003c/em\u003e(1), 131\u0026ndash;136. https://doi.org/10.1093/fampra/cmz041\u003c/li\u003e\n\u003cli\u003eWang, Y., Li, B., Zhou, Y., Wang, Y., Han, X., Zhang, S., He, Z., \u0026amp; Ouyang, L. (2021). Does Endometriosis Disturb Mental Health and Quality of Life? A Systematic Review and Meta-Analysis. \u003cem\u003eGYNECOLOGIC AND OBSTETRIC INVESTIGATION\u003c/em\u003e, \u003cem\u003e86\u003c/em\u003e(4), 315\u0026ndash;335. https://doi.org/10.1159/000516517\u003c/li\u003e\n\u003cli\u003eYoon, Y., Park, M.-A., \u0026amp; Park, S. (2021). Seeking adaptation from uncertainty: Coping strategies of South Korean women with endometriosis. \u003cem\u003eResearch in Nursing \u0026amp; Health\u003c/em\u003e, \u003cem\u003e44\u003c/em\u003e(6), 970\u0026ndash;978. https://doi.org/10.1002/nur.22186\u003c/li\u003e\n\u003c/ol\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":true,"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":"endometriosis, chronic pelvic pain, psychological distress, pain, health-related quality of life","lastPublishedDoi":"10.21203/rs.3.rs-6953959/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6953959/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003ePurpose: \u003c/strong\u003eTo assess whether pain, psychological distress and health-related quality of life (HRQoL) differ in people diagnosed with endometriosis and those suspected to have endometriosis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods: \u003c/strong\u003eThis study was a cross-sectional online survey of people with a confirmed (\u003cem\u003en\u003c/em\u003e = 550) or suspected (\u003cem\u003en\u003c/em\u003e = 103) diagnosis of endometriosis, recruited via the social media of Australian endometriosis organisations. The survey collected demographic and endometriosis-specific characteristics as well as measures of pain, psychological distress and HRQoL. Analysis of variance was conducted to compare groups on key variables.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults: \u003c/strong\u003eThe suspected endometriosis group reported significantly greater pelvic pain (\u003cem\u003eF\u003c/em\u003e(1, 651) = 8.427, \u003cem\u003ep\u003c/em\u003e= .004; partial η2 = .013), symptoms of depression (\u003cem\u003eF\u003c/em\u003e(1, 651) = 4.658, \u003cem\u003ep\u003c/em\u003e= .031; partial η2 = .007), symptoms of anxiety (\u003cem\u003eF\u003c/em\u003e(1, 651) = 9.437, \u003cem\u003ep\u003c/em\u003e= .002; partial η2 = .014), and HRQoL in the EHP-5 domains of pain (\u003cem\u003eF\u003c/em\u003e(1, 651) = 4.114, \u003cem\u003ep\u003c/em\u003e = .043; partial η2 = .006.), control and powerlessness (\u003cem\u003eF\u003c/em\u003e(1, 651) = 4.129, \u003cem\u003ep\u003c/em\u003e = .043; partial η2 = .006), and emotional wellbeing (\u003cem\u003eF\u003c/em\u003e(1, 651) = 4.310, \u003cem\u003ep\u003c/em\u003e= .038; partial η2 = .00.) than the diagnosed group.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions: \u003c/strong\u003ePeople suspected to have endometriosis reported significantly higher pain and psychological distress and poorer HRQoL than those diagnosed. This suggests that diagnosis is associated with lower levels of pain and psychological distress and greater HRQoL, possibly due to improved accessibility to treatment and validation and removal of uncertainty.\u003c/p\u003e","manuscriptTitle":"Comparing psychological distress, health-related quality of life and pain in people diagnosed with endometriosis and those suspected to have endometriosis","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-08-12 15:35:37","doi":"10.21203/rs.3.rs-6953959/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":"e98c38e2-c5ab-4cb7-bbbc-023ac3b73d7d","owner":[],"postedDate":"August 12th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-12-20T12:39:00+00:00","versionOfRecord":[],"versionCreatedAt":"2025-08-12 15:35:37","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6953959","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6953959","identity":"rs-6953959","version":["v1"]},"buildId":"WvIrzKhiLBfengagbw6Ux","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}