Patient-Centred Perspectives on Diagnostic Strategies for Endometriosis: A Qualitative Study

T.Y. conceptualised and designed the study, developed the methodology, curated and analysed the data, developed the software and visualisations, 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.M.F. contributed to data curation and participated in the review and editing of the manuscript. J.M. made contributions to the conceptualisation and design of the study and reviewed and revised the manuscript. M.L. contributed to the conceptualisation 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.

The authors have nothing to report.

This qualitative study used grounded theory methodology to explore how individuals with confirmed or suspected endometriosis experience and evaluate available diagnostic options. Grounded theory was selected because there is no established conceptual model of patient‐centred diagnostic preferences in endometriosis, and the approach supports the inductive development of concepts from lived experience [ 19 , 20 ]. Findings from this phase will inform the development of a discrete choice experiment in the subsequent phase of the IPEDT project. Ethics approval was obtained from the Hamilton Integrated Research Ethics Board (REB # 2023‐14549‐GRA). All participants provided written informed consent prior to participation. Participants were recruited from two clinical sites in Hamilton, Ontario: a tertiary care gynaecology clinic and a specialised diagnostic imaging centre. 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. To ensure diversity of perspectives, participants were stratified into two groups: those with a confirmed diagnosis based on imaging or surgery, and those with a presumptive clinical diagnosis without confirmatory imaging or operative findings. Recruitment continued until thematic saturation was reached, defined as the point at which no new concepts emerged during analysis. Semi‐structured focus group discussions were conducted via secure videoconferencing (Zoom). Each focus group included three to six participants and lasted between one and three hours. Two researchers (T.Y. and P.R.) with experience in qualitative research and endometriosis care facilitated the discussions. Separate question guides were used for participants with confirmed and suspected diagnoses in order to prompt context‐specific reflections (Appendix  S1 ). To support understanding of available diagnostic options, participants were shown an educational graphic illustrating commonly used diagnostic modalities (Appendix  S1 ). All sessions were audio‐recorded, transcribed verbatim by members of the research team, and anonymised before analysis. Data were analysed using grounded theory methodology through an iterative, three‐stage coding process: open coding, axial coding, and selective coding [ 19 , 21 ]. During open coding, transcripts were reviewed line by line to identify discrete concepts and assign initial codes. Through constant comparison, these codes were refined and organised into broader categories during axial coding, by examining relationships between contexts, actions, and consequences. 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 identity to minimise bias. Discrepancies were resolved through discussion, and unresolved items were adjudicated by a third researcher (M.L.). Data collection and analysis occurred concurrently, allowing insights from earlier focus groups to inform subsequent sessions. Thematic saturation was determined through team consensus.

Between November 2023 and August 2024, five focus groups (FG) were conducted with 25 participants aged 21–56 years. Twenty‐four had a confirmed diagnosis of endometriosis and one was undergoing assessment for suspected disease. Participant characteristics are summarised in Table  1 . Demographic characteristics of participants ( n  = 25). 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. Exemplar quotations are included to illustrate each theme. Participants described systemic and interpersonal barriers that contributed to prolonged diagnostic timelines. Dismissal of Symptoms: Symptoms were frequently minimised or misattributed, particularly in 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 assessments, which prolonged uncertainty. I had multiple ultrasounds that came back normal (…) it was years of uncertainty. (FG5) Dependency on Specialist Access: Access to expertise was limited by long waits 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) Dismissal of Symptoms: Symptoms were frequently minimised or misattributed, particularly in 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) 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 assessments, which prolonged uncertainty. I had multiple ultrasounds that came back normal (…) it was years of uncertainty. (FG5) I had multiple ultrasounds that came back normal (…) it was years of uncertainty. (FG5) Dependency on Specialist Access: Access to expertise was limited by long waits 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) 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) Participants often assumed responsibility for navigating their diagnostic journeys in the context of limited awareness and fragmented pathways. 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 frequently requested specific tests or advocated for appointments with 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) Scepticism and Frustration: Sustained self‐advocacy led to emotional exhaustion and disengagement from care. I finally got in to see a gynaecologist 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) 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) I had to develop my own plan and put together my own team of practitioners. (FG4) Navigating Referrals Independently: Participants frequently requested specific tests or advocated for appointments with 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) 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) Scepticism and Frustration: Sustained self‐advocacy led to emotional exhaustion and disengagement from care. I finally got in to see a gynaecologist 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) I finally got in to see a gynaecologist 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) Diagnostic satisfaction was closely tied to perceived expertise, continuity, and open communication. Expertise in Specialised Ultrasound: Accurate identification often followed targeted imaging by professionals with advanced skills 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 support from healthcare professionals. Expertise in Specialised Ultrasound: Accurate identification often followed targeted imaging by professionals with advanced skills 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) 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 support from healthcare professionals. 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 reduced anxiety and built trust. Being able to see what we're doing and why we're doing it makes the experience so much more comfortable for me. (FG5) 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 reduced anxiety and built trust. Being able to see what we're doing and why we're doing it makes the experience so much more comfortable for me. (FG5) Being able to see what we're doing and why we're doing it makes the experience so much more comfortable for me. (FG5) Participants strongly valued visual evidence to legitimise symptoms and increase confidence in diagnostic conclusions. 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, patient‐facing interpretation of findings was 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) 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) 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) Seeing it yourself provides an extra level of validation and helps you trust your own experiences. (FG1) Desire for Patient‐Facing Explanations: Clear, patient‐facing interpretation of findings was 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) 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) The diagnostic process was emotionally taxing and 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 minimisation and 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 ongoing need to navigate and coordinate care while symptomatic was described as demoralising. 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) 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) 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 minimisation and 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) I kept thinking, ‘I don't think I can be crazy. I'm in pain, guys.’ (FG5) Emotional Toll of Self‐Advocacy: The ongoing need to navigate and coordinate care while symptomatic was described as demoralising. 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) 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) Participants expressed nuanced and varied preferences shaped by symptom severity, prior experiences, and tolerance for uncertainty. Balance Between Certainty and Minimally Invasive Approaches: Many preferred imaging when sufficient for diagnostic decision making. 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 worsening symptoms or unresolved 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 acceptance differed according to pain burden, mental health, and previous 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) Balance Between Certainty and Minimally Invasive Approaches: Many preferred imaging when sufficient for diagnostic decision making. 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) 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 worsening symptoms or unresolved uncertainty. If my pain escalates, I'd be willing to go through surgery just to get a definitive answer. (FG4) 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 acceptance differed according to pain burden, mental health, and previous 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) 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) A formal diagnosis was perceived as essential for navigating 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 Recognised Clinical Diagnoses: A documented diagnosis reduced stigma and practical barriers. 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) 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) 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) 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 Recognised Clinical Diagnoses: A documented diagnosis reduced stigma and practical barriers. 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) 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) Participants emphasised the need for improved education among healthcare professionals and the public, as well as clearer pathways when there is clinical suspicion. Awareness in Primary Care: Many described limited knowledge of endometriosis in first‐contact settings I encountered a lot of doctors who didn't even know what endometriosis looked like. (FG4) Desire for Provider Education and Protocols: There was a perceived need for structured diagnostic pathways and skills development. There's such a need for more training for GPs [general practioners] on recognizing endometriosis. (FG4) Lack of Early Health Education: Limited gynaecological 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) Awareness in Primary Care: Many described limited knowledge of endometriosis in first‐contact settings I encountered a lot of doctors who didn't even know what endometriosis looked like. (FG4) I encountered a lot of doctors who didn't even know what endometriosis looked like. (FG4) Desire for Provider Education and Protocols: There was a perceived need for structured diagnostic pathways and skills development. There's such a need for more training for GPs [general practioners] on recognizing endometriosis. (FG4) There's such a need for more training for GPs [general practioners] on recognizing endometriosis. (FG4) Lack of Early Health Education: Limited gynaecological 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) 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‐centred approaches in endometriosis care.

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 Gynaecology 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 Gynaecology in Cancun, Mexico (September 14–17, 2025).

This qualitative study explored how individuals with confirmed or suspected endometriosis understand, navigate, and evaluate diagnostic options. Across five focus groups, participants described significant diagnostic delays, repeated dismissal of symptoms, and fragmented pathways that prolonged uncertainty and imposed emotional burden. Diagnostic satisfaction was closely linked to access to clinicians with specialised expertise in non‐invasive imaging, clear communication, and opportunities to review findings directly. Participants valued visual confirmation because it provided tangible validation of their symptoms and strengthened confidence in diagnostic interpretations. Although many participants preferred to avoid invasive procedures, several expressed willingness to consider laparoscopy when symptoms intensified or when non‐invasive modalities could not resolve uncertainty. A formal diagnosis functioned not only as a clinical milestone but also as a gateway to workplace and academic supports, and broader social recognition of the condition. Our findings reinforce and contextualise established evidence describing prolonged diagnostic timelines, symptom minimisation, and barriers to specialist care in endometriosis [ 2 , 3 , 6 , 8 , 11 , 22 , 23 , 24 , 25 ]. Prior qualitative studies have consistently identified similar themes, including emotional exhaustion associated with repeated encounters, the burden of self‐advocacy, and the centrality of trust in healthcare interactions [ 26 ]. The strong emphasis on visual confirmation aligns with previous work demonstrating that imaging serves not only as a diagnostic tool but also as a source of psychological validation and a mechanism for strengthening self‐trust [ 25 , 27 ]. This study also reflects shifts in the diagnostic landscape. Participants recognised the differences between general pelvic ultrasound and specialised gynaecological ultrasound. Their accounts illustrate how contemporary non‐invasive imaging can meaningfully inform decisions about the need for further investigation, particularly when imaging includes targeted assessment of deep and extra‐ovarian disease. At the same time, participants demonstrated awareness that laparoscopy often serves dual diagnostic and therapeutic purposes. Presenting laparoscopy as a diagnostic option within focus groups created an analytic space in which participants could articulate preferences for certainty, risk, and invasiveness separate from expectations of potential symptom relief. Rather than representing a novel reconceptualisation of diagnostic practice, the findings add depth and patient‐centred nuance to established evidence. They highlight how individuals balance a desire for minimal invasiveness with a need for clarity and legitimacy, and how these considerations interact with access barriers and the practical consequences of receiving a diagnosis. These results have several implications for clinical care. First, they underscore the need for timely, validating, and trauma‐informed communication in primary care and early referral settings. Participants frequently described years of symptom dismissal that had substantial psychological impact. Structured approaches to early recognition and referral may help minimise these experiences [ 7 , 28 , 29 , 30 ]. Second, ensuring equitable access to high‐quality non‐invasive imaging, including specialised gynaecological ultrasound, may reduce diagnostic uncertainty and delays. Participants viewed the expertise of the clinician performing the scan as pivotal to diagnostic accuracy and their confidence in subsequent clinical decisions [ 31 ]. 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 [ 31 ]. Strengthening training pathways, referral structures, and regional capacity may improve consistency in diagnostic experiences. Third, consultations that include patient‐facing explanations of findings appear to support shared decision making by enhancing understanding and reducing anxiety. Incorporating interpretation practices that foreground transparency and partnership may help meet patient expectations for involvement in the diagnostic process. Finally, clinical discussions may benefit from explicit acknowledgement of the practical implications of diagnosis. Participants emphasised that formal documentation was essential for navigating employment, academic, and administrative systems. Clinicians may wish to explore these needs with patients to ensure appropriate support is provided [ 7 , 28 , 29 , 30 ]. The findings provide a qualitative foundation for the next phase of the IPEDT project, which will use a discrete choice experiment to quantify how individuals prioritise specific diagnostic attributes. The themes identified here offer clear direction regarding which attributes are meaningful to patients, including the importance of clinician expertise, clear communication, visual confirmation, perceived invasiveness, and the practical consequences of receiving a formal diagnosis. Incorporating these attributes into a quantitative preference‐elicitation framework will allow assessment of trade‐offs that cannot be captured through qualitative inquiry alone and may support the development of diagnostic pathways that reflect both clinical effectiveness and patient priorities. Further work is needed to evaluate the feasibility of implementing patient‐aligned diagnostic strategies across diverse healthcare settings. Because the present study highlights the influence of system‐level factors such as access to specialised imaging and the administrative significance of diagnostic documentation, future research should examine how such factors shape preferences in regions with different funding structures, workforce distribution, and referral mechanisms. Longitudinal research may also be valuable in understanding how preferences evolve over time, particularly as symptoms change or as individuals progress from diagnostic evaluation to treatment [ 32 , 33 ]. Broader sampling strategies that include older individuals and those with lower health literacy or fewer resources may deepen understanding of how demographic and socioeconomic factors influence diagnostic preferences and navigation strategies [ 34 ]. A key strength of this study is its methodological rigour. Grounded theory was applied systematically through open, axial, and selective coding, and all transcripts were independently double‐coded by two researchers with adjudication by a third [ 18 , 35 ]. Conducting data collection and analysis concurrently enables iterative refinement of the discussion guides and deepened exploration of emerging concepts. Another strength relates to the diversity of diagnostic experiences represented within the sample. The inclusion of participants with both confirmed and suspected endometriosis enhanced conceptual breadth and allowed exploration of diagnostic reasoning across different stages of the care pathway. The depth of the data was further supported by semi‐structured discussions, which encouraged open discussion and collective reflection. The use of online focus groups can also be viewed as a strength, as this approach increased accessibility for individuals with demanding schedules, mobility limitations, or fluctuating symptoms, potentially broadening participation compared with in‐person sessions. However, several limitations warrant consideration. The study was conducted in a single urban region within the publicly funded Canadian healthcare system. Features of this system, including primary care gatekeeping, regional concentration of specialist services, and the absence of point‐of‐care user fees, may shape preferences for specialised imaging, tolerance for wait times, and the practical importance participants placed on formal diagnostic documentation. Core interpersonal and experiential themes are likely transferable to other publicly funded jurisdictions; however, the extent of system‐level constraints, such as access to specialised ultrasound and surgical wait lists, may vary considerably. In mixed or private‐payer systems, financial barriers and variation in insurance coverage could alter the diagnostic trade‐offs individuals are willing to make [ 36 ]. The sample was relatively young and highly educated (80% with college or postgraduate education), a pattern typical of qualitative research participation but one that may amplify themes related to self‐advocacy, information seeking, and navigation of the healthcare system. Individuals with lower health literacy or fewer resources may face different barriers or weigh diagnostic trade‐offs differently [ 37 , 38 , 39 ]. There are also limitations inherent to the focus group method. Although group discussion can stimulate shared reflection, it may inhibit disclosure of sensitive or deeply personal experiences. Despite best efforts by the facilitators to balance participation, individual interviews may have provided richer insight into topics such as stigma, fear, or prior negative encounters. Another limitation relates to the educational visual used to orient participants to diagnostic options. While this facilitated a shared baseline of understanding, any visual framing tool carries the potential to shape perceptions of risk, invasiveness, or comparative utility. Finally, although the study focused explicitly on diagnostic pathways, participants often reflected on the overlapping diagnostic and therapeutic functions of diagnostic modalities, including laparoscopy. This overlap reflects real‐world practice but complicates attempts to isolate diagnostic decision‐making as a discrete process. Preferences expressed in relation to laparoscopy may therefore have been shaped in part by expectations or hopes related to symptom relief rather than diagnostic certainty alone.

This study presents patient‐informed insights for endometriosis diagnosis, grounded in the lived experiences of individuals with confirmed or suspected disease. Participants prioritised non‐invasive imaging performed by clinicians with specialised expertise, clarity of communication, and opportunities for visual confirmation. They also described the emotional, practical, and institutional significance of receiving a formal diagnosis. These insights extend existing qualitative evidence and provide a conceptual foundation for the development of a discrete choice experiment within the IPEDT project, which will quantify preferences for specific diagnostic attributes and further support the design of patient‐aligned diagnostic pathways.

Endometriosis is a chronic, oestrogen‐dependent inflammatory condition that affects approximately 10% of individuals assigned female at birth during reproductive years [ 1 ]. The condition has substantial impacts on physical, psychological, and social well‐being. Clinical presentation is heterogeneous and includes dysmenorrhea, dyspareunia, dysuria, chronic pelvic pain, infertility, and fatigue [ 2 , 3 ]. This variability contributes to diagnostic uncertainty, frequent misattribution of symptoms, and delays that may extend nearly a decade [ 3 ], with detrimental consequences for quality of life, mental health, and access to timely support [ 4 , 5 , 6 , 7 ]. Diagnostic evaluation currently involves clinical assessment, transvaginal ultrasound (TVUS), magnetic resonance imaging (MRI), laparoscopy with histopathologic confirmation, and emerging biomarker tests [ 5 , 8 , 9 , 10 , 11 , 12 ]. Advances in specialised ultrasound, including deep endometriosis mapping, dynamic tenderness assessment, and evaluation of extra‐ovarian disease, have shifted practice towards high‐quality imaging when conducted by appropriately trained clinicians [ 7 , 9 , 11 , 13 , 14 ]. TVUS remains accessible and cost‐effective but is highly operator‐dependent, while MRI offers a more comprehensive overview but is less available and more resource‐intensive [ 10 , 11 ]. Laparoscopy is the only modality capable of definitively ruling out endometriosis, although in most clinical settings it is integrated into a combined diagnostic‐therapeutic intervention rather than used as a purely diagnostic procedure [ 11 ]. Biomarkers remain investigational and are not recommended for routine clinical use due to insufficient validation [ 7 , 15 ]. Despite growing emphasis on patient‐centred care, there is limited evidence on how individuals with suspected or confirmed endometriosis weigh trade‐offs among invasiveness, diagnostic certainty, emotional impact, and the practical implications of a formal diagnosis [ 16 , 17 ]. Understanding these preferences is essential to designing diagnostic pathways that reflect both clinical effectiveness and patient values, expectations, 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 attributes that inform diagnostic decision making [ 18 , 19 , 20 ].

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 (Specialised Ultrasound in Gynaecology & 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.

Appendix S1: bjo70188‐sup‐0001‐AppendixS1.docx.