Paradigm Shift in Diagnosing Endometriosis: A Patient-Centered Preference Grounded Theory Analysis

Paradigm Shift in Diagnosing Endometriosis: A Patient-Centered Preference Grounded Theory Analysis | Authorea try { document.documentElement.classList.add('js'); } catch (e) { } var _gaq = _gaq || []; _gaq.push(['_setAccount', 'G-8VDV14Y67G']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })(); Skip to main content Preprints Collections Wiley Open Research IET Open Research Ecological Society of Japan All Collections About About Authorea FAQs Contact Us Quick Search anywhere Search for preprint articles, keywords, etc. Search Search ADVANCED SEARCH SCROLL BJOG: An International Journal of Obstetrics and Gynaecology This is a preprint and has not been peer reviewed. Data may be preliminary. 3 October 2025 V1 Latest version Share on Paradigm Shift in Diagnosing Endometriosis: A Patient-Centered Preference Grounded Theory Analysis Authors : Tiffany Yeretsian 0009-0001-7026-0479 , Paola Romeo , Shay M. Freger 0000-0001-5534-3965 , Jacques W.M. Maas , and Mathew Leonardi [email protected] Authors Info & Affiliations https://doi.org/10.22541/au.175952356.67166207/v1 392 views 168 downloads Contents Abstract Supplementary Material Information & Authors Metrics & Citations View Options References Figures Tables Media Share Abstract ABSTRACT Objective: To explore diagnostic preferences among individuals with confirmed or suspected endometriosis to inform the development of patient-centered diagnostic strategies. Design: Qualitative study using semi-structured focus group discussions and grounded theory methodology. Setting: Tertiary gynecology clinic and a specialized diagnostic imaging center; focus groups conducted via videoconference. Population: Twenty-five individuals aged 21 to 56 years with confirmed or suspected endometriosis, recruited from two clinical sites between November 17, 2023, and August 15, 2024. Methods: Semi-structured focus groups were conducted, transcribed verbatim, anonymized, and analyzed using grounded theory. Open, axial, and selective coding were performed iteratively by two independent researchers. Discrepancies in coding were resolved through discussion or adjudication by a third analyst. Thematic saturation guided the conclusion of data collection. Main outcome measures: Patient-identified themes regarding diagnostic preferences, barriers, and facilitators in endometriosis care. Results: Eight major themes emerged: (1) diagnostic challenges and delays, (2) patient advocacy and self-advocacy, (3) importance of provider expertise and trust, (4) desire for visual confirmation and tangible validation, (5) emotional and psychological impact of the diagnostic journey, (6) diagnostic preferences and risk tolerance, (7) practical and institutional needs for formal diagnosis, and (8) educational needs and knowledge gaps among healthcare professionals and health service users. Conclusion: This study presents a patient-informed framework to guide diagnostic decision-making in endometriosis care. By centering patient perspectives, it supports the development of diagnostic strategies that are clinically sound, psychologically validating, and responsive to broader social and institutional needs. These findings provide foundational insights for the prospective development of a discrete choice experiment in a subsequent phase of the IPEDT study. Funding: This research did not receive any specific funding from public, commercial, or not-for-profit agencies. Key words: endometriosis, diagnostic preferences, grounded theory, patient-centered care, qualitative research, imaging, visual confirmation TITLE PAGE Article Title Paradigm Shift in Diagnosing Endometriosis: A Patient-Centered Preference Grounded Theory Analysis Author names/Affiliations Dr. Tiffany Yeretsian a MB BCh BAO a Department of Obstetrics and Gynecology, McMaster University, 1280 Main Street West, Hamilton, Ontario, L8S 4L8 Dr. Paola Romeo a MD a Department of Obstetrics and Gynecology, McMaster University, 1280 Main Street West, Hamilton, Ontario, L8S 4L8 Shay M. Freger a PhDs, MSc, MPH a Department of Obstetrics and Gynecology, McMaster University, 1280 Main Street West, Hamilton, Ontario, L8S 4L8 Dr. Jacques Maas b,c , MD, PhD b Department of Obstetrics and Gynaecology, Maastricht University Medical Center+, P. Debyelaan 25, 6229 HX Maastricht, The Netherlands GROW - Research Institute for Oncology and Reproduction, Maastricht University Medical Centre+, Universiteitssingel 40 6229 ER Maastricht, The Netherlands Dr. Mathew Leonardia MD, PhD aDepartment of Obstetrics and Gynecology, McMaster University, 1280 Main Street West, Hamilton, Ontario, L8S 4L8 Corresponding author Name: Dr. Mathew Leonardi ( [email protected] ) Department of Obstetrics and Gynecology, McMaster University, 1280 Main Street West, Hamilton, Ontario, L8S 4L8 Word Count for Abstract: 250/250 words Word Count for Manuscript : 2992/3500 words ABSTRACT Objective: To explore diagnostic preferences among individuals with confirmed or suspected endometriosis to inform the development of patient-centered diagnostic strategies. Design: Qualitative study using semi-structured focus group discussions and grounded theory methodology. Setting: Tertiary gynecology clinic and a specialized diagnostic imaging center; focus groups conducted via videoconference. Population: Twenty-five individuals aged 21 to 56 years with confirmed or suspected endometriosis, recruited from two clinical sites between November 17, 2023, and August 15, 2024. Methods: Semi-structured focus groups were conducted, transcribed verbatim, anonymized, and analyzed using grounded theory. Open, axial, and selective coding were performed iteratively by two independent researchers. Discrepancies in coding were resolved through discussion or adjudication by a third analyst. Thematic saturation guided the conclusion of data collection. Main outcome measures: Patient-identified themes regarding diagnostic preferences, barriers, and facilitators in endometriosis care. Results: Eight major themes emerged: (1) diagnostic challenges and delays, (2) patient advocacy and self-advocacy, (3) importance of provider expertise and trust, (4) desire for visual confirmation and tangible validation, (5) emotional and psychological impact of the diagnostic journey, (6) diagnostic preferences and risk tolerance, (7) practical and institutional needs for formal diagnosis, and (8) educational needs and knowledge gaps among healthcare professionals and health service users. Conclusion: This study presents a patient-informed framework to guide diagnostic decision-making in endometriosis care. By centering patient perspectives, it supports the development of diagnostic strategies that are clinically sound, psychologically validating, and responsive to broader social and institutional needs. These findings provide foundational insights for the prospective development of a discrete choice experiment in a subsequent phase of the IPEDT study. Funding: This research did not receive any specific funding from public, commercial, or not-for-profit agencies. Key words: endometriosis, diagnostic preferences, grounded theory, patient-centered care, qualitative research, imaging, visual confirmation MAIN TEXT INTRODUCTION Endometriosis is a chronic, estrogen-dependent systemic condition affecting approximately 10% of individuals assigned female at birth during reproductive years. It presents with a heterogenous constellation of symptoms, including dysmenorrhea, dyspareunia, dysuria, chronic pelvic pain, infertility, and fatigue.1,2 The clinical variability of endometriosis contributes to frequent misdiagnosis and diagnostic delays, which often span 8 to 12 years.2 These delays are associated with significant physical, psychological, and social consequences, including diminished quality of life, increased mental health burden, and barriers to accessing institutional support.3-6 Diagnostic modalities for endometriosis include clinical assessment, transvaginal ultrasound (TVUS), magnetic resonance imaging (MRI), diagnostic laparoscopy with histopathologic confirmation, and emerging biomarker tests.4,7-11 When performed by trained providers, TVUS and MRI offer high diagnostic accuracy for deep and ovarian endometriosis, although they remain less sensitive for superficial disease.6,8,10,12,13 TVUS is accessible and cost-effective but operator-dependent; MRI provides comprehensive assessment but is less available and more resource-intensive.9,10 Laparoscopy remains the sole method to rule out endometriosis but is invasive and associated with procedural risks.10 Biomarkers are investigational and not currently recommended for clinical use due to insufficient validation.6,14 Despite growing emphasis on patient-centered care, little empirical evidence exists on how individuals with confirmed or suspected endometriosis weigh diagnostic trade-offs such as invasiveness, certainty, and psychological impact.15,16 Understanding these preferences is essential for designing diagnostic pathways that are not only clinically effective but also aligned with patient values and lived experiences. This study represents the qualitative phase of the Individuals’ Preferences for Endometriosis Diagnostic Tests (IPEDT) project, a multi-phase mixed-methods investigation. Using grounded theory methodology, we explored diagnostic experiences and preferences among individuals with confirmed or suspected endometriosis to identify the diagnostic attributes that shape patient decision making.17-19 Study Design This qualitative study employed grounded theory methodology to explore diagnostic experiences and preferences among individuals with confirmed or suspected endometriosis. Given the absence of established models for patient-centered diagnostic models in endometriosis care, grounded theory was selected to generate a conceptual framework rooted in participants’ lived experiences. 18,19 These insights may inform the design of a discrete choice experiment in a subsequent phase of the IPEDT study. Ethics Approval This study received approval from the Hamilton Integrated Research Ethics Board (REB # 2023-14549-GRA). All participants provided written informed consent prior to participation. Participants and Recruitment Participants were recruited from two clinical sites in Hamilton, Ontario: a tertiary care gynecology clinic and a specialized diagnostic imaging center. Eligible individuals were aged 18 years or older, fluent in English, and either had a confirmed diagnosis of endometriosis or were undergoing evaluation for suspected disease. A purposive sampling strategy was used to capture a range of diagnostic experiences. Participants were stratified into two groups: those with a confirmed diagnosis via imaging or surgery, and those with a presumptive clinical diagnosis without such confirmation. Recruitment continued until thematic saturation was reached, with no new themes emerging. Data Collection Semi-structured focus group discussions were conducted via secure videoconferencing (Zoom). Each session included three to six participants and lasted between one and three hours. Discussions were moderated by two researchers (T.Y. and P.R.), with experience in endometriosis care and qualitative research. Distinct question guides were used for participants with confirmed versus suspected diagnoses to elicit context-specific perspectives ( Appendix A ). To aid understanding, participants were shown an educational graphic of available diagnostic modalities ( Appendix B ). All sessions were audio-recorded, transcribed verbatim by research team members, and anonymized. Data Analysis Data were analyzed using grounded theory methodology, following a structured three-stage coding process: open, axial, and selective coding. 18,20 During open coding, transcripts were reviewed line by line to identify discrete concepts and assign initial codes. These codes were iteratively refined through constant comparison across transcripts to ensure consistency and conceptual clarity. In the axial coding phase, related codes were grouped into higher-order categories by examining relationships among conditions, contexts, participant actions, and consequences. This process facilitated the development of a coherent structure that captured the complexity of participants’ diagnostic experiences. Selective coding identified a central theme that unified the data and grounded the emerging framework. This theme was supported by the most salient and recurrent categories and served as the foundation for the emerging conceptual framework. Two researchers (T.Y. and P.R.) independently coded all transcripts using NVivo software (QSR International). Coders were blinded to participant identities to minimize bias. Discrepancies were resolved through discussion, and unresolved cases were adjudicated by a third researcher (M.L.). Data collection and analysis were conducted concurrently, allowing insights from earlier sessions to inform subsequent focus groups. Thematic saturation was determined through team consensus. RESULTS Between November 2023 and August 2024, five focus groups (FG) were conducted with 25 participants aged 21-56. Twenty-four had a confirmed diagnosis of endometriosis; one was undergoing evaluation. Participant demographics are summarized in Table 1 . Using grounded theory methodology, eight major themes and 24 subthemes were identified. These themes reflect the structural, interpersonal, emotional, and institutional dimensions of participants’ diagnostic experiences. Theme 1: Diagnostic Challenges and Delays Participants described systemic and interpersonal barriers that contributed to prolonged diagnostic timelines. Dismissal of Symptoms: Symptoms were often minimized or misattributed, especially during adolescence. “My family doctor kept saying to take painkillers and dismissed my pain as normal. ” (FG2) “ They [doctors] just kind of said, ‘that’s just how some periods are ’.” (FG5) Inconsistent Diagnostic Outcomes: Participants reported undergoing multiple inconclusive tests and receiving conflicting diagnoses.“I had multiple ultrasounds that came back normal (…) it was years of uncertainty.” (FG5) Dependency on Specialist Access: Access to expert care was limited by long wait times and geographic barriers.“It took a while, with a lot of fighting for myself… now it’s a 12- to 18-month wait list for my surgery” (FG5). Theme 2: Patient Advocacy and Self-Advocacy Participants frequently assumed responsibility for navigating their diagnostic journeys due to gaps in provider knowledge and initiative. • Self-Directed Research and Coordination: Many relied on online resources and peer networks to understand symptoms and coordinate care. “I had to develop my own plan and put together my own team of practitioners.” (FG4) • Navigating Referrals Independently: Participants often initiated referrals and advocated for specific tests or specialists. “I literally went every time to my GP with my laptop, my journal, I’d already printed the forms. ‘Hey, I just need you to sign these’.” (FG5) • Skepticism and Frustration: Persistent advocacy led to emotional exhaustion and disengagement from care. “I finally got in to see a gynecologist who dismissed me right away… so I just kind of wrote myself off for a few years.” (FG4) “It’s draining to keep having to push for care while dealing with pain.” (FG1) Theme 3: Importance of Provider Expertise and Trust Diagnostic satisfaction was closely tied to provider expertise, continuity, and communication. • Expertise in Specialized Ultrasound: Accurate diagnosis was often achieved only through expert imaging. “Having a doctor who truly knows how to look for endometriosis on the ultrasound made all the difference” (FG5). “I was finally diagnosed via ultrasound… it was validating to get the diagnosis” (FG5). • Consistency and Continuity of Care: Participants valued longitudinal care and consistent provider relationships. “After years of not being monitored, finally having someone who followed up with me made such a difference.” (FG2) • Transparency and Involvement in Care: Being included in diagnostic discussions fostered trust and reduced anxiety. “Being able to see what we’re doing and why we’re doing it makes the experience so much more comfortable for me.” (FG5) Theme 4: Desire for Visual Confirmation and Tangible Validation Visual evidence was essential for legitimizing symptoms and enhancing diagnostic confidence. Seeing Diagnostic Images: Participants expressed a strong desire to view their own imaging results.“It’s validating to see what’s actually happening in my body, rather than just being told.” (FG4) Need for Visual Evidence in Medical Interactions: Visual confirmation helped participants trust their experiences and advocate for care.“Seeing it yourself provides an extra level of validation and helps you trust your own experiences.” (FG1) Desire for Patient-Facing Explanations: Clear, accessible interpretations of imaging findings were highly valued.“Explaining each finding on the ultrasound helped me understand my pain and why certain areas hurt.” (FG2)“It’s like a dentist explaining how they know there’s a cavity. It involves me more in the process and builds credibility.” (FG4) Theme 5: Emotional and Psychological Impact of the Diagnostic Journey The diagnostic process was emotionally taxing, marked by both relief and distress. Validation and Relief upon Diagnosis: Receiving a diagnosis affirmed participants’ experiences and alleviated self-doubt.“Finally getting a diagnosis after years was such a relief—it validated everything I’d been feeling.” (FG5)“It wasn’t all in my head.” (FG4) Impact of Chronic Dismissal on Mental Health: Repeated dismissal contributed to anxiety, isolation, and diminished self-confidence.“I kept thinking, ‘I don’t think I can be crazy. I’m in pain, guys.’ ” (FG5) Emotional Toll of Self-Advocacy: The burden of navigating care while managing symptoms was described as demoralizing.“I had to push for every step (…) it would have been a lot less exhausting if I hadn’t had to fight so hard.” (FG2) “You know your body better than anyone else (…) but it’s exhausting to keep proving that. ” (FG5) Theme 6: Diagnostic Preferences and Risk Tolerance Participants expressed nuanced preferences shaped by symptom severity and personal risk thresholds. Balance Between Certainty and Minimally Invasive Approaches: Imaging was preferred when sufficient for diagnosis. “I’d prefer not to go through surgery if ultrasound or MRI could give a clear answer… but if that’s not enough, I’d consider more invasive options.” (FG4) Openness to Invasive Options if Symptoms Worsened: Willingness to undergo laparoscopy increased with symptom severity or diagnostic uncertainty. “If my pain escalates, I’d be willing to go through surgery just to get a definitive answer.” (FG4) Individual Variability in Risk Acceptance: Risk tolerance varied based on pain burden, mental health, and prior care experiences. “When you’re going through excruciating pain 24/7, you’re more likely to go for surgery.” (FG4) “I’m okay with taking a chance if it’s reversible and won’t cause irreversible harm to my vital organs.” (FG5) Theme 7: Practical and Institutional Needs for Formal Diagnosis A formal diagnosis was viewed as essential to navigate healthcare and social systems. Need for Formal Diagnosis for Institutional Support: Documentation facilitated access to accommodations and benefits.“Having an official diagnosis helped with my work accommodations.” (FG4)“If I can get official documentation for my employer, it would make things easier. It would help others understand my needs without having to explain everything in detail each time.” (FG5) Importance of Diagnostic Documentation in Workplace and Education Settings: Participants described needing formal diagnoses to justify academic and workplace accommodations.“Getting a formal, documented diagnosis was crucial for me at school.” (FG4)“People may not take you seriously, but if a doctor supports you, they will.” (FG5) Desire for Recognized Clinical Diagnoses: Recognition helped reduce stigma and improve access.“Having a diagnosis that doctors recognize and understand prevents doubts and makes it easier to access support, especially when living abroad.” (FG4)“A clinical diagnosis isn’t just for treatment; it’s about having proof of what you’re dealing with and not constantly having to explain yourself.” (FG5) Theme 8: Educational Needs and Knowledge Gaps among Healthcare Professionals and Health Service Users Participants emphasized the need for improved education among both providers and the public. Limited Awareness Among General Practitioners: Many providers lacked basic knowledge of endometriosis.“I encountered a lot of doctors who didn’t even know what endometriosis looked like.” (FG4) Desire for Provider Education and Protocols: Participants advocated for standardized diagnostic pathways and improved training.“There’s such a need for more training for GPs [general practioners] on recognizing endometriosis” (FG4). Lack of Early Health Education: Limited gynecologic education in schools delayed symptom recognition and care-seeking.“If there was more information in schools and the media, more people would be aware of endometriosis” (FG2).“I wish I’d learned more about what’s normal and what’s not early on—so much time could have been saved if I’d known the signs to look out for” (FG5). These eight themes collectively illustrate the multifaceted nature of diagnostic experiences and underscore the importance of patient-centered approaches in endometriosis care. DISCUSSION Main Findings This study identified eight major themes reflecting the diagnostic experiences and preferences of individuals with confirmed or suspected endometriosis. Participants consistently prioritized non-invasive diagnostic modalities, particularly TVUS when performed by skilled providers. Visual confirmation of disease, transparent communication, and provider expertise emerged as critical determinants of diagnostic satisfaction. A formal diagnosis was viewed not only as a clinical milestone but also as a gateway to institutional accommodations and social validation. While non-invasive approaches were generally preferred, participants expressed conditional openness to invasive diagnostics in the context of escalating symptoms or unresolved diagnostic uncertainty. These findings underscore the importance of tailoring diagnostic strategies to individual values and clinical context. Results in the Context of What is Known These findings align with existing literature documenting prolonged diagnostic delays in endometriosis and their associated psychological sequelae. 1,2,5,7,10,21-24 Prior research has similarly highlighted the prevalence of symptom dismissal, fragmented care pathways, and limited access to specialized diagnostic expertise. 7,10,25 This study builds on that foundation in an era of rapid imaging advancements, demonstrating how visual confirmation and shared interpretation of findings can restore patient confidence, validate lived experiences, and rebuild trust in the healthcare system. 24,26 The emphasis on provider expertise and continuity of care reinforces established evidence on the importance of trust and communication in therapeutic relationships. This analysis also contributes to the evolving discourse on epistemic injustice in healthcare, wherein patients’ experiential knowledge is systematically undervalued. 27,28 By centering the diagnostic journey on patient perspectives, this study advances the concept of diagnostic equity and highlights the necessity for transparent, inclusive, and dialogic care models. While the challenges described are not unique to a single healthcare system, the emergent framework offers a transferable model for enhancing diagnostic responsiveness and equity across diverse clinical contexts. Clinical Implications Diagnostic strategies should prioritize non-invasive modalities, particularly when symptoms and imaging findings are concordant. Invasive procedures should be reserved for cases of diagnostic ambiguity or escalating clinical concern, with the recognition that patients may conflate the therapeutic and diagnostic roles of surgery.29 Participants’ emphasis on visual confirmation and transparent communication highlights the value of patient-facing diagnostic practices, including shared image review and clear, accessible explanation of findings. The strong association between provider expertise and diagnostic satisfaction underscores the need for enhanced training in endometriosis-specific imaging particularly during residency and continuing professional development. The perceived utility of a formal diagnosis extended beyond clinical management, serving as a prerequisite for workplace accommodations, academic support, and social legitimacy.25,30 These findings reinforce the broader sociocultural and institutional functions of diagnosis and advocate for trauma-informed, empathic care models that prioritize validation, continuity, and patient engagement.6,28,31,32 While the study supports the integration of patient-centered approaches into diagnostic care, further research is needed to evaluate the feasibility, scalability, and clinical impact of implementing these practices in diverse healthcare settings. Such evaluation is essential to ensure that patient-informed diagnostic frameworks can be sustainably embedded into routine clinical workflows across varied institutional and geographic contexts. Research Implications Future research should quantify the diagnostic attributes identified here and explore how preferences evolve over time (e.g. as patients age or as technology changes) and how they influence treatment adherence, health-related quality of life, and healthcare utilization.33 Implementation studies are needed to assess the feasibility of integrating patient-centered diagnostic practices into routine care.34 These may include structured communication protocols, shared decision-making tools, and trauma-informed diagnostic frameworks. Additionally, targeted educational interventions are required to improve provider knowledge of endometriosis, particularly among general practitioners and frontline healthcare professionals who often serve as initial points of contact.34,35 A prospective discrete choice experiment may be developed to quantify patient trade-offs among diagnostic attributes, thereby informing the design of evidence-based, patient-aligned diagnostic pathways. Strengths and Limitations The primary strength of this study lies in its rigorous application of grounded theory methodology, which enabled the development of a patient-informed diagnostic framework. 17,36 Semi-structured focus groups facilitated the collection of rich, multidimensional data, allowing for exploration of both shared and divergent perspectives. Including participants across a broad age range and with diverse diagnostic experiences enriched the variety of perspectives captured. Thematic saturation was reached through an iterative, independently coded process. Several limitations should also be acknowledged. The sample was drawn from a single urban region in Canada, which may limit the transferability of findings to other geographic or healthcare contexts. 37 The group-based format may have introduced social desirability bias or inhibited disclosure of sensitive experiences. While the group dynamic supported the emergence of shared narratives, individual interviews could have provided additional depth. The high level of educational attainment among participants (80% with college or postgraduate education) likely enhanced the depth and nuance of insights, particularly regarding diagnostic decision-making and self-advocacy. However, this may limit generalizability to populations with lower health literacy or different healthcare navigation experiences. The dual role of researchers as both focus group facilitators and data analysts may have introduced interpretive bias. This was mitigated through independent coding, team-based reflexivity, and adjudication of discrepancies by a third analyst. Although laparoscopy serves both diagnostic and therapeutic purposes, this study focused exclusively on its diagnostic role. Participants were guided to compare diagnostic modalities, and discussions about treatment were intentionally limited. Still, several participants acknowledged its therapeutic role, which may have contributed to their conditional openness to invasive procedures. Finally, as a qualitative study, the findings are exploratory and hypothesis-generating. Quantitative validation is needed to assess the generalizability and applicability of the proposed diagnostic framework across broader populations and healthcare settings. Conclusions This study presents a patient-informed framework for endometriosis diagnosis, grounded in the lived experiences of individuals with confirmed or suspected disease. Participants emphasized the importance non-invasive diagnostic modalities, visual confirmation, transparent communication, and provider expertise. A formal diagnosis was seen as essential not only for clinical care but also for accessing institutional accommodations and social validation. These findings offer foundational insights for the prospective development of a discrete choice experiment in a subsequent phase of the IPEDT study. AUTHOR CONTRIBUTIONS T.Y. conceptualized and designed the study, developed the methodology, curated and analyzed the data, developed the software and visualizations, and supervised all stages of the project. T.Y. carried out the formal analyses, conducted the investigation, managed project administration and resources, and wrote the original draft of the manuscript. T.Y. also reviewed and revised the manuscript. T.Y. had full access to all data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. P.R. contributed to the formal analysis and data curation, and reviewed and revised the manuscript. S.F. contributed to data curation and participated in the review and editing of the manuscript. J.M. made contributions to the conceptualization and design of the study, and reviewed and revised the manuscript. M.L. contributed to the conceptualization and methodology of the study, provided supervision, and critically reviewed and revised the manuscript. M.L. had full access to all data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work. M.L. is the guarantor of the overall content. ACKNOWLEDGEMENTS The authors thank Suzanne Dedden for her contributions to the methodological design. We acknowledge Kyle McGowan for his support with research ethics submissions and transcription of focus group discussions. We also thank Mahsa Gholiof for her assistance with participant recruitment, and Narges Kalani and Tim Volkov for their support in transcribing the focus group discussions. Most importantly, we extend our sincere appreciation to all participants for generously sharing their time, experiences, and insights. FUNDING This research did not receive any specific funding from public, commercial, or not-for-profit agencies. MEETING PRESENTATIONS An earlier version of this study was presented at the 10th Annual Society of Endometriosis and Uterine Disorders Congress in Geneva, Switzerland (April 18, 2024); the 34th World Congress on Ultrasound in Obstetrics and Gynecology in Budapest, Hungary (September 18, 2024); the 11th Annual Society of Endometriosis and Uterine Disorders Congress in Prague, Czech Republic (April 25, 2025); the 16th World Congress on Endometriosis in Sydney, Australia (May 23, 2025), and the 35th World Congress on Ultrasound in Obstetrics and Gynecology in Cancun, Mexico (September 14-17, 2025). CONFLICT OF INTEREST J.M. is a member of World Endometriosis Society Board, SIG Endometriosis ESGE, advisory board of Ryeqo Gedeon Richter and Yselty Theramex. M.L. reports grants from Australian MRFF, AbbVie, AIMA/SOPHIE, CanSAGE, CIHR, Endometriosis Australia, Hamilton Health Sciences, Health Canada, Hyivy/MITACS/SOPHIE, Medical Research Future Fund/Imagendo, Myant Inc/MITACS, GE HealthCare/MITACS, and Pfizer; honoraria for lectures/writing from AIUM, AbbVie, Bayer, Canon, GE Healthcare, Pfizer, Samsung, TerSera; consultancy work with AbbVie, Chugai, Gesynta, Hologic, Imagendo, Pfizer, and Roche Diagnostics; and affiliations with SUGO (Specialized Ultrasound in Gynecology & Obstetrics) and Endometriosis360. He holds leadership roles in the World Endometriosis Society Early Career Board, ISUOG Next Generation, and the Gynecologic Ultrasound Society, all outside the submitted work. T.Y., P.R., and S.M.F. do not declare any competing financial interests or personal relationships that could have influenced the work reported in this manuscript. REFERENCES 1. Maulenkul T, Kuandyk A, Makhadiyeva D, et al. Understanding the impact of endometriosis on women’s life: an integrative review of systematic reviews. BMC Womens Health . Sep 19 2024;24(1):524. doi:10.1186/s12905-024-03369-5 2. Horne AW, Missmer SA. Pathophysiology, diagnosis, and management of endometriosis. BMJ . Nov 14 2022;379:e070750. doi:10.1136/bmj-2022-070750 3. Mellado BH, Pilger TL, Poli-Neto OB, Rosa E Silva JC, Nogueira AA, Candido Dos Reis FJ. Current usage of qualitative research in female pelvic pain: a systematic review. Arch Gynecol Obstet . Sep 2019;300(3):495-501. doi:10.1007/s00404-019-05212-x 4. Rolla E. Endometriosis: advances and controversies in classification, pathogenesis, diagnosis, and treatment. F1000Res . 2019;8doi:10.12688/f1000research.14817.1 5. Rempert AN, Rempert TH, Liu A, et al. A Systematic Review of the Psychosocial Impact of Endometriosis before and after Treatment. Reproductive Sciences . 2024/07/01 2024;31(7):1828-1860. doi:10.1007/s43032-024-01515-w 6. Singh SS, Allaire C, Al-Nourhji O, et al. Guideline No. 449: Diagnosis and Impact of Endometriosis – A Canadian Guideline. J Obstet Gynaecol Can . 2024;46(5):102450. doi:10.1016/j.jogc.2024.102450 7. Greene AD, Lang SA, Kendziorski JA, Sroga-Rios JM, Herzog TJ, Burns KA. Endometriosis: where are we and where are we going? Reproduction . 09 2016;152(3):R63-78. doi:10.1530/REP-16-0052 8. Nisenblat V, Bossuyt PM, Farquhar C, Johnson N, Hull ML. Imaging modalities for the non-invasive diagnosis of endometriosis. Cochrane Database Syst Rev . Feb 2016;2:CD009591. doi:10.1002/14651858.CD009591.pub2 9. Leonardi M, Robledo KP, Espada M, Vanza K, Condous G. SonoPODography: A new diagnostic technique for visualizing superficial endometriosis. Eur J Obstet Gynecol Reprod Biol . Nov 2020;254:124-131. doi:10.1016/j.ejogrb.2020.08.051 10. Pascoal E, Wessels JM, Aas-Eng MK, et al. Strengths and limitations of diagnostic tools for endometriosis and relevance in diagnostic test accuracy research. Ultrasound Obstet Gynecol . Mar 01 2022;doi:10.1002/uog.24892 11. Agarwal SK, Chapron C, Giudice LC, et al. Clinical diagnosis of endometriosis: a call to action. Am J Obstet Gynecol . Apr 2019;220(4):354.e1-354.e12. doi:10.1016/j.ajog.2018.12.039 12. Leyland N, Casper R, Laberge P, Singh SS, SOGC. Endometriosis: diagnosis and management. J Obstet Gynaecol Can . Jul 2010;32(7 Suppl 2):S1-32. 13. Mick I, Freger SM, Marien M, Gholiof M, Leonardi M. Diagnostic Accuracy of Transvaginal Ultrasonography for Endometriosis According to the International Deep Endometriosis Analysis Consensus. O&G Open . 2025;2(1) 14. Dolińska W, Draper H, Othman L, et al. Accuracy and utility of blood and urine biomarkers for the noninvasive diagnosis of endometriosis: a systematic literature review and meta-analysis. F&S Reviews . 2023/04/01/ 2023;4(2):116-130. doi:https://doi.org/10.1016/j.xfnr.2022.12.001 15. De Corte P, Klinghardt M, von Stockum S, Heinemann K. Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics-A Systematic Literature Review. BJOG . Jan 2025;132(2):118-130. doi:10.1111/1471-0528.17973 16. Dancet EA, Apers S, Kremer JA, Nelen WL, Sermeus W, D’Hooghe TM. The patient-centeredness of endometriosis care and targets for improvement: a systematic review. Gynecol Obstet Invest . 2014;78(2):69-80. doi:10.1159/000358392 17. Corbin J, Strauss A. Basics of qualitative research: Techniques and procedures for developing grounded theory . Sage publications; 2014. 18. Service RW. Book Review: Corbin, J., & Strauss, A. (2008). Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory (3rd ed.). Thousand Oaks, CA: Sage. Organizational Research Methods . 2009;12(3):614-617. doi:10.1177/1094428108324514 19. Strauss A, Corbin J. Grounded theory methodology: An overview. 1994; 20. Draucker CB, Martsolf DS, Ross R, Rusk TB. Theoretical sampling and category development in grounded theory. Qual Health Res . Oct 2007;17(8):1137-48. doi:10.1177/1049732307308450 21. Endometriosis – Diagnosis, treatment and patient experiences: A systematic review and assessment of medical, economic, social and ethical aspects. 2018. 22. Kalaitzopoulos DR, Samartzis N, Kolovos GN, et al. Treatment of endometriosis: a review with comparison of 8 guidelines. BMC Womens Health . Nov 29 2021;21(1):397. doi:10.1186/s12905-021-01545-5 23. Facchin F, Saita E, Barbara G, Dridi D, Vercellini P. ”Free butterflies will come out of these deep wounds”: A grounded theory of how endometriosis affects women’s psychological health. J Health Psychol . Mar 2018;23(4):538-549. doi:10.1177/1359105316688952 24. Hearn JH, Bryson K, Barsauskaite L, Bullo S. A COM-B and Theoretical Domains Framework Mapping of the Barriers and Facilitators to Effective Communication and Help-Seeking Among People With, or Seeking a Diagnosis Of, Endometriosis. J Health Commun . Mar 03 2024;29(3):174-186. doi:10.1080/10810730.2023.2299003 25. Lightbourne A, Foley S, Dempsey M, Cronin M. Living With Endometriosis: A Reflexive Thematic Analysis Examining Women’s Experiences With the Irish Healthcare Services. Qualitative Health Research . 2024;34(4):311-322. doi:10.1177/10497323231214114 26. Pettersson A, Berterö CM. How Women with Endometriosis Experience Health Care Encounters. Womens Health Rep (New Rochelle) . 2020;1(1):529-542. doi:10.1089/whr.2020.0099 27. Langmann E, Kainradl AC, Weßel M, Rokvity A. Endometriosis in later life: an intersectional analysis from the perspective of epistemic injustice. Med Health Care Philos . Mar 2025;28(1):151-159. doi:10.1007/s11019-024-10245-4 28. Mikesell L, Bontempo AC. Healthcare Providers’ Impact on the Care Experiences of Patients with Endometriosis: The Value of Trust. Health Commun . Oct 2023;38(10):1981-1993. doi:10.1080/10410236.2022.2048468 29. Shenoy-Bhangle AS, Carnelli C, Tong A, et al. Head to toe: expand your diagnosis on routine imaging to include endometriosis. Abdom Radiol (NY) . Jun 20 2025;doi:10.1007/s00261-025-05051-2 30. Patel M. Recent Trends in Medical Management of Endometriosis. J Obstet Gynaecol India . Dec 2024;74(6):479-483. doi:10.1007/s13224-024-02097-y 31. Gorfinkel I, Perlow E, Macdonald S. The trauma-informed genital and gynecologic examination. CMAJ . 2021;193(28):E1090-E1090. 32. Boersen Z, Oosterman JM, Aalders CIM, Braat DDM, Verhaak CM, Nap AW. Psychological Factors Contributing to Health-Related Quality of Life Following Endometriosis Surgery: Results of a Cross-Sectional Study. Reproductive Sciences . 2025/06/23 2025;doi:10.1007/s43032-025-01899-3 33. Takeuchi M, Matsuzaki K, Harada M. Endometriosis, a common but enigmatic disease with many faces: current concept of pathophysiology, and diagnostic strategy. Jpn J Radiol . Aug 2024;42(8):801-819. doi:10.1007/s11604-024-01569-5 34. de Kok L, Schers H, Boersen Z, Braat D, Teunissen D, Nap A. Towards reducing diagnostic delay in endometriosis in primary care: a qualitative study. BJGP Open . 2024;8(3):BJGPO.2024.0019. doi:10.3399/BJGPO.2024.0019 35. Doyle T. Delayed and Misdiagnosed Endometriosis. 2025; 36. Corbin JM, Strauss A. Grounded theory research: Procedures, canons, and evaluative criteria. Qualitative sociology . 1990;13(1):3-21. 37. Malterud K. Qualitative research: standards, challenges, and guidelines. The Lancet . 2001;358(9280):483-488. doi:10.1016/S0140-6736(01)05627-6 TABLE LEGEND Table 1: Demographic characteristics of participants ( n = 25) Supplementary Material File (table 1.docx) Download 28.88 KB Information & Authors Information Version history V1 Version 1 03 October 2025 Copyright This work is licensed under a Non Exclusive No Reuse License. Collection BJOG: An International Journal of Obstetrics and Gynaecology Keywords endometriosis: diagnosis general gynaecology gynaecology: diagnostic imaging qualitative research Authors Affiliations Tiffany Yeretsian 0009-0001-7026-0479 McMaster University Department of Obstetrics and Gynecology View all articles by this author Paola Romeo McMaster University Department of Obstetrics and Gynecology View all articles by this author Shay M. Freger 0000-0001-5534-3965 McMaster University Department of Obstetrics and Gynecology View all articles by this author Jacques W.M. Maas Maastricht Universitair Medisch Centrum+ Afdeling Verloskunde and Gynaecologie View all articles by this author Mathew Leonardi [email protected] McMaster University Department of Obstetrics and Gynecology View all articles by this author Metrics & Citations Metrics Article Usage 392 views 168 downloads .FvxKWukQNSOunydq8rnd { width: 100px; } Citations Download citation Tiffany Yeretsian, Paola Romeo, Shay M. Freger, et al. Paradigm Shift in Diagnosing Endometriosis: A Patient-Centered Preference Grounded Theory Analysis. Authorea . 03 October 2025. DOI: https://doi.org/10.22541/au.175952356.67166207/v1 If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Simply select your manager software from the list below and click Download. For more information or tips please see 'Downloading to a citation manager' in the Help menu . Format Please select one from the list RIS (ProCite, Reference Manager) EndNote BibTex Medlars RefWorks Direct import Tips for downloading citations document.getElementById('citMgrHelpLink').addEventListener('click', function() { popupHelp(this.href); return false; }); $(".js__slcInclude").on("change", function(e){ if ($(this).val() == 'refworks') $('#direct').prop("checked", false); $('#direct').prop("disabled", ($(this).val() == 'refworks')); }); View Options View options PDF View PDF Figures Tables Media Share Share Share article link Copy Link Copied! Copying failed. Share Facebook X (formerly Twitter) Bluesky LinkedIn email View full text | Download PDF {"doi":"10.22541/au.175952356.67166207/v1","type":"Article"} Now Reading: Share Figures Tables Close figure viewer Back to article Figure title goes here Change zoom level Go to figure location within the article Download figure Toggle share panel Toggle share panel Share Toggle information panel Toggle information panel Go to previous graphic Go to next graphic Go to previous table Go to next table All figures All tables View all material View all material xrefBack.goTo xrefBack.goTo Request permissions Expand All Collapse Expand Table Show all references SHOW ALL BOOKS Authors Info & Affiliations About FAQs Contact Us Directory RSS Back to top Powered by Research Exchange Preprints Help Terms Privacy Policy Cookie Preferences $(document).ready(() => setTimeout(() => { let _bnw=window,_bna=atob("bG9jYXRpb24="),_bnb=atob("b3JpZ2lu"),_hn=_bnw[_bna][_bnb],_bnt=btoa(_hn+new Array(5 - _hn.length % 4).join(" ")); $.get("/resource/lodash?t="+_bnt); },4000)); (function(){function c(){var b=a.contentDocument||a.contentWindow.document;if(b){var d=b.createElement('script');d.innerHTML="window.__CF$cv$params={r:'a025e11e3fd4ad07',t:'MTc3OTg5MzkyMw=='};var a=document.createElement('script');a.src='/cdn-cgi/challenge-platform/scripts/jsd/main.js';document.getElementsByTagName('head')[0].appendChild(a);";b.getElementsByTagName('head')[0].appendChild(d)}}if(document.body){var a=document.createElement('iframe');a.height=1;a.width=1;a.style.position='absolute';a.style.top=0;a.style.left=0;a.style.border='none';a.style.visibility='hidden';document.body.appendChild(a);if('loading'!==document.readyState)c();else if(window.addEventListener)document.addEventListener('DOMContentLoaded',c);else{var e=document.onreadystatechange||function(){};document.onreadystatechange=function(b){e(b);'loading'!==document.readyState&&(document.onreadystatechange=e,c())}}}})();