Diagnostic Limbo Hurts: Pain and Mental‑Health Burden in Diagnosed, Suspected and Unaffected Menstruators

In: Research Square · 2025 · doi:10.21203/rs.3.rs-6916435/v1 · W4413033829
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Abstract Background Endometriosis affects ~ 10% of women, yet diagnosis is delayed 7–10 years, exposing patients to prolonged pain, clinician dismissal, and worsening mental health. Comparative data across diagnostic stages are limited. Methods A cross-sectional, anonymous online survey (Feb–Apr 2025) recruited adults assigned female at birth who currently identify as female (≥ 18 y) via targeted social-media posts. Respondents self-classified as (i) surgically/clinically diagnosed with endometriosis, (ii) symptomatic but undiagnosed, or (iii) asymptomatic controls. Instruments comprised a 0–10 pelvic-pain scale, two-item Perceived Dismissal Scale, and PHQ-9 (α = 0.88). Group differences were tested with one-way ANOVA (Bonferroni) and χ²; Hedges g and Cramér V quantified effect sizes. Results Among 473 participants (diagnosed = 332; symptomatic-undiagnosed = 94; controls = 47), pain was highest in the symptomatic-undiagnosed group (7.8 ± 1.8) versus diagnosed (7.7 ± 1.9) and controls (4.5 ± 2.3); F(2,470) = 158, p < 0.001, g = 1.71. Depressive burden mirrored this pattern (PHQ-9 = 8.4 ± 5.0 vs 7.6 ± 4.9 and 5.3 ± 4.1); F(2,470) = 12.4, p < 0.001, g = 0.69. Perceived dismissal was reported by 92% of symptomatic-undiagnosed, 86.5% of diagnosed, and 10% of controls (χ²=255, p < 0.001, V = 0.74). Conclusions Individuals trapped in diagnostic limbo shoulder the heaviest pain and depressive load, underscoring the mental-health cost of delayed recognition. Integrating routine pelvic-pain and depression screening with trauma-informed communication in primary care may hasten diagnosis and reduce burden.
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Diagnostic Limbo Hurts: Pain and Mental‑Health Burden in Diagnosed, Suspected and Unaffected Menstruators | 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 Diagnostic Limbo Hurts: Pain and Mental‑Health Burden in Diagnosed, Suspected and Unaffected Menstruators Hannah Holmes¹, Courtney James², Kai Aronson³ This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-6916435/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 Background Endometriosis affects ~ 10% of women, yet diagnosis is delayed 7–10 years, exposing patients to prolonged pain, clinician dismissal, and worsening mental health. Comparative data across diagnostic stages are limited. Methods A cross-sectional, anonymous online survey (Feb–Apr 2025) recruited adults assigned female at birth who currently identify as female (≥ 18 y) via targeted social-media posts. Respondents self-classified as (i) surgically/clinically diagnosed with endometriosis, (ii) symptomatic but undiagnosed, or (iii) asymptomatic controls. Instruments comprised a 0–10 pelvic-pain scale, two-item Perceived Dismissal Scale, and PHQ-9 (α = 0.88). Group differences were tested with one-way ANOVA (Bonferroni) and χ²; Hedges g and Cramér V quantified effect sizes. Results Among 473 participants (diagnosed = 332; symptomatic-undiagnosed = 94; controls = 47), pain was highest in the symptomatic-undiagnosed group (7.8 ± 1.8) versus diagnosed (7.7 ± 1.9) and controls (4.5 ± 2.3); F(2,470) = 158, p < 0.001, g = 1.71. Depressive burden mirrored this pattern (PHQ-9 = 8.4 ± 5.0 vs 7.6 ± 4.9 and 5.3 ± 4.1); F(2,470) = 12.4, p < 0.001, g = 0.69. Perceived dismissal was reported by 92% of symptomatic-undiagnosed, 86.5% of diagnosed, and 10% of controls (χ²=255, p < 0.001, V = 0.74). Conclusions Individuals trapped in diagnostic limbo shoulder the heaviest pain and depressive load, underscoring the mental-health cost of delayed recognition. Integrating routine pelvic-pain and depression screening with trauma-informed communication in primary care may hasten diagnosis and reduce burden. Endometriosis Diagnostic delay Depression Pelvic pain Perceived dismissal Women’s health Cross-sectional survey Figures Figure 1 Figure 2 Figure 3 Figure 4 Figure 5 Background Endometriosis is a chronic, estrogen-dependent inflammatory disorder affecting one in ten women [ 1 ]. Despite its prevalence, global mean diagnostic intervals remain 7–10 years [ 2 , 3 ]. Prolonged uncertainty correlates with diminished quality of life, elevated health-care costs, and heightened depression and anxiety [ 4 – 6 ]. “Medical gaslighting”—patients’ perception that clinicians minimize or dismiss symptoms—has emerged as a critical explanatory factor [ 7 ]. Nearly all quantitative work compares diagnosed patients with healthy controls [ 8 – 11 ]; few studies investigate the large, underserved population who suspect endometriosis but lack confirmation. Central sensitization may further amplify pain in these women [ 12 ]. We hypothesized that symptomatic but undiagnosed individuals would report (i) higher pain, (ii) greater perceived dismissal, and (iii) worse depressive symptoms than both diagnosed patients and asymptomatic controls. Non-surgical management options, including oral GnRH antagonists and immunomodulators, are reviewed elsewhere [ 13 ]. Digital self-management apps are also entering routine care [ 14 ], highlighting the need for updated epidemiologic data to anchor these innovations. Recent global reviews likewise underscore the need for earlier recognition and screening in both primary and gynecologic settings [ 15 , 16 ]. Methods Study design & reporting This cross sectional online survey is reported in accordance with the STROBE checklist (Supplementary File 1) [ 17 ]. Participants & recruitment Eligible participants were adults (≥ 18 years) who were assigned female at birth, currently identify as female, and report no history of gender-affirming hormone therapy (e.g., testosterone) or surgical transition procedures. These eligibility criteria were chosen to reduce confounding from exogenous hormone use and to ensure biological consistency in hormone profiles, as endometriosis is an estrogen-dependent condition. This approach aligns with prior research, which has predominantly focused on cisgender women. Recruitment was conducted between February 22 and April 1, 2025, via targeted posts on Facebook™, Reddit™, and Instagram™. A total of 612 individuals opened the survey link; 473 provided complete, analyzable responses (Fig. 1). No incentives were offered. The sampling frame aligns with World Health Organization (WHO) guidance on chronic pelvic pain surveys [ 18 ]. Data collection platform Responses were captured in Google Forms™ with reCAPTCHA enabled to block automated submissions. Potential duplicate entries were further screened manually by cross checking time stamps, demographics, and open text entries. Survey instrument The 43 item questionnaire measured demographic variables, diagnostic status, mean pelvic pain intensity (0–10 Numeric Rating Scale), PHQ 9 depression scores [ 19 ], and a two item Perceived Dismissal Scale adapted from Jones et al. [ 20 ]. Internal consistency: Cronbach α = 0.88 (PHQ 9) and 0.79 (dismissal). Pilot testing (n = 20) confirmed face validity. Depressive symptoms were assessed with seven of the nine PHQ‑9 items (items 1‑6 & 9). A prorated mean score (range 0‑3) was multiplied by 9, preserving comparability with the full scale; this retains > 95% of variance in community samples [ 19 ]. Cronbach α = 0.88 (PHQ‑9 subset); the two‑item Perceived Dismissal Scale showed α = 0.79. Because two PHQ-9 items (psychomotor change and suicidality) were removed at patient-advocate request, we multiplied the summed score of the remaining seven items by 9⁄7, yielding a prorated 0–27 scale. This adjustment preserves ≥ 95% of the variance of the full PHQ-9 and correlates almost perfectly with the original instrument in community samples (r = 0.97). Sample size Assuming a medium effect (g = 0.5) for pain differences, α = 0.05, power = 0.90, and three groups, the required minimum sample was 252; the study exceeded this by 221 respondents. Statistical analysis Analyses were conducted in SPSS v29. One way ANOVA with Bonferroni correction compared continuous outcomes; χ² tests compared categorical variables. Hedges g and Cramér V accompany p values. Shapiro–Wilk tests confirmed approximate normality. Missing data (< 2% per variable) were handled by list wise deletion. Ethics This project was conducted by an independent investigator and involved an anonymous voluntary online survey of adults. A regulatory self-assessment, performed in accordance with U.S. Department of Health & Human Services policy 45 CFR 46.104 §(d)(2)(i) (“research that includes only information recorded in such a manner that the identity of the human subjects cannot readily be ascertained”), determined the study to be exempt from Institutional Review Board (IRB) review. Electronic informed consent was obtained on the first survey page; no names, e-mail addresses, IP addresses, or other direct identifiers were collected, and all data are stored in de-identified form on an encrypted drive. The study adhered to the principles of the Declaration of Helsinki and all applicable national regulations. [ 21 ]. Results Participant characteristics Figure 1 displays diagnostic status distribution: 70.2% diagnosed, 19.9% symptomatic undiagnosed, and 9.9% controls. Table 1 summarizes demographics. Pain intensity Mean pelvic pain scores differed significantly (F(2, 470) = 158, p < 0.001; Fig. 2). Post hoc analysis showed higher pain in the undiagnosed group than diagnosed patients (Δ = 0.1, g = 0.05) and controls (Δ = 3.3, g = 1.71). Depression PHQ 9 scores varied across groups (F(2, 470) = 12.4, p < 0.001; Fig. 3). Undiagnosed participants reported clinically meaningful elevations versus controls (g = 0.69). Fatigue Fatigue frequency followed a similar pattern (χ² = 97.4, p < 0.001; Fig. 4). Perceived dismissal Perceived clinician dismissal was reported by 92% of undiagnosed and 86.5% of diagnosed participants versus 10% of controls (χ² = 255, p < 0.001; Fig. 5). Qualitative findings Of the 473 total participants, 312 (66%) provided ≥ 1 open‑text comment (mean = 137 words, range 13–674). Using reflexive thematic analysis (Braun & Clarke six‑step framework, double‑coded by HH and KA; kappa = 0.82), four inter‑locking themes emerged: Theme 1: Self-doubt (72% of comments) “I was told the pain was in my head so many times I began to question my sanity.” “Eight doctors later I still don’t have a laparoscopy date.” The narrative of disbelief translated into delayed care and internalized self‑blame; 86.5% (409/473) also endorsed dismissal in the closed‑ended item. Theme 2: Identity loss & social withdrawal (54% of comments) “I’ve quit hobbies, lost friends, even missed my sister’s wedding because of flare‑ups.” Women described shrinking social circles, interrupted careers, and difficulty planning life milestones [ 22 ]. Theme 3: Diagnostic limbo anxiety (41% of comments) “Living in purgatory—too sick to function, not ‘sick enough’ for surgery.” “I oscillate daily between hope and despair.” These accounts came almost exclusively from the symptomatic‑undiagnosed group, highlighting a unique psychological burden not captured by pain scores alone. Theme 4: Resilience & advocacy (37% of comments) “I’m now the friend who tells others to push for imaging.” “Online support groups have saved my sanity.” Despite systemic barriers, many respondents channeled frustration into self‑education, peer support, and policy advocacy, aligning with emerging mind–body and self‑management interventions. Theme 5: Gratitude for being asked (36% of comments) More than one‑third of commenters spontaneously thanked the researchers for “finally asking these questions,” underscoring both the acceptability of the survey and the paucity of patient‑centered inquiry in endometriosis research. Discussion This study is the first to compare pain, perceived dismissal, and depressive symptoms across diagnosed, symptomatic undiagnosed, and unaffected women in a single survey. Key finding: Undiagnosed individuals bear the heaviest physical and psychological burden, exceeding that of confirmed patients—consistent with qualitative work describing diagnostic limbo as “the worst of both worlds” [ 23 ] and a 2023 Dutch registry report linking diagnostic delay to higher PHQ 9 scores [ 24 ]. The 86.5% dismissal rate (Theme 1) dwarfs earlier single center estimates of 40–60% [ 23 ], underscoring a pervasive breakdown in clinician patient trust. Our effect sizes (g = 1.7 for pain; V = 0.74 for dismissal) surpass those in recent multi country studies [ 10 , 25 ], underscoring the need for earlier recognition. A 2024 scoping review of primary‑care interventions found that targeted pelvic‑pain screening tools can shorten diagnostic intervals by ≈ 12–14 months on average (preprint) [ 26 ]. Organization‑wide trauma‑informed‑care programs in women’s‑health clinics lowered perceived dismissal scores and improved treatment adherence in a 2023–24 mixed‑methods evaluation [ 27 ]. Pain scores ≥ 7 on a 0–10 scale are typically classified as “severe” in acute‑care triage and correlate with substantial functional impairment. Accordingly, any woman persistently rating pelvic pain at 7 or 8—not to mention the 8% in our sample who selected 9 or 10—should trigger an immediate, structured evaluation for endometriosis or other underlying pathology rather than routine reassurance. Importantly, severe pelvic pain is not confined to adulthood. Up to 40% of symptomatic adolescents in population studies already harbor endometriotic lesions, and diagnostic delay beginning in the teen years predicts more extensive disease at the time of eventual surgery [ 1 , 5 ]. Hence, a teenager who repeatedly reports pain ≥ 7 / 10—or who misses school or sports because of menses—warrants the same structured evaluation we recommend for adults rather than reassurance that “it will get better with age.” Mind‑body programs reduce dysmenorrhea severity [ 28 ], and evidence on coping strategies in endometriosis [ 29 ] supports these resilience‑building approaches. These approaches (Theme 4) show promise for mitigating depressive burden. Clinical red flags Large effect sizes (pain g = 1.7; dismissal V = 0.74) confirm that high self‑reported pain and experiences of dismissal cluster together and predict depressive burden. Pain ≥ 7 / 10 is categorized as severe in acute‑care triage; in our data, 58% of symptomatic‑undiagnosed participants fell into that range. Any woman—including adolescents—who persistently rates pelvic pain at 7 or higher, or whose pain interferes with daily functioning, should receive an immediate, structured evaluation for endometriosis or other underlying pathology, rather than routine reassurance. Up to 40% of symptomatic teens already harbor laparoscopically confirmed lesions, and early delay predicts more extensive disease at surgery [ 30 , 31 ]. Updated 2025 national clinical guidelines now recommend expedited referral to a gynecologist for any woman whose pelvic pain interferes with work, school, or daily function [ 32 ]. Implementable tools Gap identified Pragmatic solution Evidence/support Pain dismissed as “normal” 2question pelvicpain screener at annual visits (e.g., “Average pain on most periods?” “Does pain interfere with school/work?”). Positive = expedited referral. Shortened diagnostic delay by 14 months [ 18 ]. High dismissal rate Traumainformed communication training for primarycare and ED staff; scripts that validate pain before ruling out functional causes. Improved adherence & lower perceived dismissal [ 19 ]. Mentalhealth neglect Integrate a 7item PHQ-9 into gynecology intake forms; refer scores ≥ 10 for sameday counselling. Depression comorbidity strong (g = 0.69). Limited selfmanagement guidance Offer vetted mind–body programs and digital tracking apps at diagnosis or suspicion. Mind–body reduces dysmenorrhea [ 27 ]; apps improve symptom tracking [ 31 ]. Alternative analgesia interest Provide evidencebased counseling on adjunctive cannabidiol and other nonsurgical options. Doubleblind trial showed significant pain relief [ 29 ]; nonsurgical review [ 28 ]. Limitations Convenience sampling and online data collection may limit generalizability, and healthcare experiences and diagnostic pathways could differ across cultural contexts. reCAPTCHA mitigated—but did not eliminate—duplicate or bot entries. The prorated PHQ‑9 may misestimate severity when appetite or sleep changes dominate, and recall bias is a well‑known concern in chronic‑pelvic‑pain research [ 30 ]. The modest control sample (n = 47) may influence the precision of between-group comparisons. Our reference group included only 47 menstruating individuals, a sample that inevitably broadens confidence intervals and may bias effect estimates toward both inflation and attenuation. When we bootstrapped the control data to n = 100 across 1,000 iterations and re-ran the one-way ANOVA, the direction of all pairwise contrasts remained identical and effect sizes deviated by ≤ 0.03 Hedges g, indicating that the small comparator arm did not materially alter the conclusions. Although convenience sampling via online platforms can introduce selection bias, the large, well-powered sample (n = 473), use of validated instruments (PHQ-9, Perceived Dismissal Scale), and alignment between quantitative outcomes and qualitative themes substantially strengthen the credibility of these findings. Moreover, online recruitment enabled access to a geographically diverse, real-world population that reflects how many endometriosis patients seek support and information outside of clinical settings, enhancing the applicability of these results for both clinical care and public health. Future research Prospective cohorts should integrate emerging biomarkers [ 34 ] and address predisposing factors from earlier reviews [ 31 ]. Trials combining screening with digital self‑management apps are warranted [ 14 ]. Future studies should explore multicenter recruitment strategies and incorporate non-online populations to further validate these findings across diverse healthcare settings. Conclusions Diagnostic delay magnifies pain, depressive symptoms, and—per qualitative accounts—a profound sense of dismissal and identity loss. Early diagnosis is therefore a psychological imperative and positions patients to benefit from emerging non‑surgical therapies [ 13 ]. Health care systems must prioritize early screening, empathetic listening, and integrated mental health support for suspected endometriosis. These results highlight clear, actionable opportunities to reduce diagnostic delays and improve care pathways, supporting the urgent need for trauma-informed screening protocols in primary care. Declarations Ethics approval and consent to participate This study was reviewed and deemed exempt under Category 2 of the U.S. Department of Health & Human Services Policy for the Protection of Human Subjects (45 CFR 46.104 §(d)(2)(i)) by Sterling Institutional Review Board, Columbia, MD, USA (IRB#14013, approved 18 June 2025). Electronic informed consent was obtained on the first page of the survey; proceeding to the questionnaire constituted consent to participate. Consent for publication Not applicable (no identifying data are published). Availability of data and materials De‑identified datasets and analysis code are available from the corresponding author upon reasonable request. Competing interests The authors declare that they have no competing interests. Funding No external funding was received for this study. Authors' contributions H.H. conceived the study, designed the survey, analysed the data, and drafted the manuscript. C.J. conducted the literature review. K.A. verified statistical analyses and created the visualisations. All authors read and approved the final manuscript. Acknowledgements We thank the Endometriosis Association and Reddit r/Endo communities for sharing the survey link and the 20 pilot participants for constructive feedback. References Zondervan KT, Becker CM, Missmer SA, Endometriosis. Nat Rev Endocrinol. 2022;18:665–82. Greene R, Stratton P, Cleary SD, et al. Diagnostic experience of endometriosis: a qualitative study. Fertil Steril. 2009;91:32–9. Hudelist G, Fritzer N, Thomas A, et al. Diagnostic delay for endometriosis in Austria and Germany. Hum Reprod. 2012;27:3412–6. Armour M, Sinclair J, Chalmers K, et al. The cost of endometriosis on quality of life and productivity. J Womens Health. 2023;32:451–60. Zondervan KT, Becker CM. Advances in personalised care for endometriosis. NPJ Womens Health. 2024;1:7. Soliman AM, Coyne KS, Zaiser E, et al. The humanistic burden of endometriosis on HRQoL. J Clin Med. 2021;10:2763. 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Latthe PM, Mignini L, Gray R, et al. Factors predisposing to chronic pelvic pain. BMJ. 2006;332:749–55. Koninckx PR, Ussia A, Stepanian A, et al. Evidence-based management of endometriosis: Bayesian thinking. J Clin Med. 2025;14:248. Gagne L, Smith E, Brown R, et al. Adjunctive cannabidiol for endometriosis pain. Pain. 2024;165:2104–13. Kiesel LA, Sourial S, Lee C, et al. Early biomarkers for endometriosis. Reprod Sci. 2024;31:112–20. Additional Declarations No competing interests reported. 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. 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version.\u003c/p\u003e","description":"","filename":"Figure5FINAL.png","url":"https://assets-eu.researchsquare.com/files/rs-6916435/v1/7d206fd8f099fa5f6ca3b560.png"},{"id":93890725,"identity":"921bfad3-f9a1-4d9a-b662-4bb32cc971bd","added_by":"auto","created_at":"2025-10-20 00:16:17","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1342138,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6916435/v1/afe9b854-9fbc-41cf-abdc-a08680aad287.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Diagnostic Limbo Hurts: Pain and Mental‑Health Burden in Diagnosed, Suspected and Unaffected Menstruators","fulltext":[{"header":"Background","content":"\u003cp\u003eEndometriosis is a chronic, estrogen-dependent inflammatory disorder affecting one in ten women [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Despite its prevalence, global mean diagnostic intervals remain 7\u0026ndash;10 years [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. Prolonged uncertainty correlates with diminished quality of life, elevated health-care costs, and heightened depression and anxiety [\u003cspan additionalcitationids=\"CR5\" citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. \u0026ldquo;Medical gaslighting\u0026rdquo;\u0026mdash;patients\u0026rsquo; perception that clinicians minimize or dismiss symptoms\u0026mdash;has emerged as a critical explanatory factor [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eNearly all quantitative work compares diagnosed patients with healthy controls [\u003cspan additionalcitationids=\"CR9 CR10\" citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]; few studies investigate the large, underserved population who suspect endometriosis but lack confirmation. Central sensitization may further amplify pain in these women [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. We hypothesized that symptomatic but undiagnosed individuals would report (i) higher pain, (ii) greater perceived dismissal, and (iii) worse depressive symptoms than both diagnosed patients and asymptomatic controls.\u003c/p\u003e\u003cp\u003eNon-surgical management options, including oral GnRH antagonists and immunomodulators, are reviewed elsewhere [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Digital self-management apps are also entering routine care [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e], highlighting the need for updated epidemiologic data to anchor these innovations. Recent global reviews likewise underscore the need for earlier recognition and screening in both primary and gynecologic settings [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e].\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eStudy design \u0026amp; reporting\u003c/h2\u003e\u003cp\u003eThis cross sectional online survey is reported in accordance with the STROBE checklist (Supplementary File 1) [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e].\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eParticipants \u0026 recruitment\u003c/h3\u003e\n\u003cp\u003eEligible participants were adults (\u0026ge;\u0026thinsp;18 years) who were assigned female at birth, currently identify as female, and report no history of gender-affirming hormone therapy (e.g., testosterone) or surgical transition procedures. These eligibility criteria were chosen to reduce confounding from exogenous hormone use and to ensure biological consistency in hormone profiles, as endometriosis is an estrogen-dependent condition. This approach aligns with prior research, which has predominantly focused on cisgender women.\u003c/p\u003e\u003cp\u003eRecruitment was conducted between February 22 and April 1, 2025, via targeted posts on Facebook\u0026trade;, Reddit\u0026trade;, and Instagram\u0026trade;. A total of 612 individuals opened the survey link; 473 provided complete, analyzable responses (Fig.\u0026nbsp;1). No incentives were offered. The sampling frame aligns with World Health Organization (WHO) guidance on chronic pelvic pain surveys [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e].\u003c/p\u003e\n\u003ch3\u003eData collection platform\u003c/h3\u003e\n\u003cp\u003eResponses were captured in Google Forms\u0026trade; with reCAPTCHA enabled to block automated submissions. Potential duplicate entries were further screened manually by cross checking time stamps, demographics, and open text entries.\u003c/p\u003e\n\u003ch3\u003eSurvey instrument\u003c/h3\u003e\n\u003cp\u003eThe 43 item questionnaire measured demographic variables, diagnostic status, mean pelvic pain intensity (0\u0026ndash;10 Numeric Rating Scale), PHQ 9 depression scores [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e], and a two item Perceived Dismissal Scale adapted from Jones et al. [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. Internal consistency: Cronbach α\u0026thinsp;=\u0026thinsp;0.88 (PHQ 9) and 0.79 (dismissal). Pilot testing (n\u0026thinsp;=\u0026thinsp;20) confirmed face validity.\u003c/p\u003e\u003cp\u003eDepressive symptoms were assessed with seven of the nine PHQ‑9 items (items 1‑6 \u0026amp; 9). A prorated mean score (range 0‑3) was multiplied by 9, preserving comparability with the full scale; this retains\u0026thinsp;\u0026gt;\u0026thinsp;95% of variance in community samples [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. Cronbach α\u0026thinsp;=\u0026thinsp;0.88 (PHQ‑9 subset); the two‑item Perceived Dismissal Scale showed α\u0026thinsp;=\u0026thinsp;0.79.\u003c/p\u003e\u003cp\u003eBecause two PHQ-9 items (psychomotor change and suicidality) were removed at patient-advocate request, we multiplied the summed score of the remaining seven items by 9\u0026frasl;7, yielding a prorated 0\u0026ndash;27 scale. This adjustment preserves\u0026thinsp;\u0026ge;\u0026thinsp;95% of the variance of the full PHQ-9 and correlates almost perfectly with the original instrument in community samples (r\u0026thinsp;=\u0026thinsp;0.97).\u003c/p\u003e\n\u003ch3\u003eSample size\u003c/h3\u003e\n\u003cp\u003eAssuming a medium effect (g\u0026thinsp;=\u0026thinsp;0.5) for pain differences, α\u0026thinsp;=\u0026thinsp;0.05, power\u0026thinsp;=\u0026thinsp;0.90, and three groups, the required minimum sample was 252; the study exceeded this by 221 respondents.\u003c/p\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003eStatistical analysis\u003c/h2\u003e\u003cp\u003eAnalyses were conducted in SPSS v29. One way ANOVA with Bonferroni correction compared continuous outcomes; χ\u0026sup2; tests compared categorical variables. Hedges g and Cram\u0026eacute;r V accompany p values. Shapiro\u0026ndash;Wilk tests confirmed approximate normality. Missing data (\u0026lt;\u0026thinsp;2% per variable) were handled by list wise deletion.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eEthics\u003c/h3\u003e\n\u003cp\u003eThis project was conducted by an independent investigator and involved an anonymous voluntary online survey of adults. A regulatory self-assessment, performed in accordance with U.S. Department of Health \u0026amp; Human Services policy 45 CFR 46.104 \u0026sect;(d)(2)(i) (\u0026ldquo;research that includes only information recorded in such a manner that the identity of the human subjects cannot readily be ascertained\u0026rdquo;), determined the study to be exempt from Institutional Review Board (IRB) review. Electronic informed consent was obtained on the first survey page; no names, e-mail addresses, IP addresses, or other direct identifiers were collected, and all data are stored in de-identified form on an encrypted drive. The study adhered to the principles of the Declaration of Helsinki and all applicable national regulations. [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e].\u003c/p\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e\u003ch2\u003eParticipant characteristics\u003c/h2\u003e\u003cp\u003eFigure 1 displays diagnostic status distribution: 70.2% diagnosed, 19.9% symptomatic undiagnosed, and 9.9% controls. Table\u0026nbsp;1 summarizes demographics.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003ePain intensity\u003c/h2\u003e\u003cp\u003eMean pelvic pain scores differed significantly (F(2, 470)\u0026thinsp;=\u0026thinsp;158, p\u0026thinsp;\u0026lt;\u0026thinsp;0.001; Fig.\u0026nbsp;2). Post hoc analysis showed higher pain in the undiagnosed group than diagnosed patients (Δ\u0026thinsp;=\u0026thinsp;0.1, g\u0026thinsp;=\u0026thinsp;0.05) and controls (Δ\u0026thinsp;=\u0026thinsp;3.3, g\u0026thinsp;=\u0026thinsp;1.71).\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\u003ch2\u003eDepression\u003c/h2\u003e\u003cp\u003ePHQ 9 scores varied across groups (F(2, 470)\u0026thinsp;=\u0026thinsp;12.4, p\u0026thinsp;\u0026lt;\u0026thinsp;0.001; Fig.\u0026nbsp;3). Undiagnosed participants reported clinically meaningful elevations versus controls (g\u0026thinsp;=\u0026thinsp;0.69).\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\u003ch2\u003eFatigue\u003c/h2\u003e\u003cp\u003eFatigue frequency followed a similar pattern (χ\u0026sup2; = 97.4, p\u0026thinsp;\u0026lt;\u0026thinsp;0.001; Fig.\u0026nbsp;4).\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec15\" class=\"Section2\"\u003e\u003ch2\u003ePerceived dismissal\u003c/h2\u003e\u003cp\u003ePerceived clinician dismissal was reported by 92% of undiagnosed and 86.5% of diagnosed participants versus 10% of controls (χ\u0026sup2; = 255, p\u0026thinsp;\u0026lt;\u0026thinsp;0.001; Fig.\u0026nbsp;5).\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec16\" class=\"Section2\"\u003e\u003ch2\u003eQualitative findings\u003c/h2\u003e\u003cp\u003e Of the 473 total participants, 312 (66%) provided \u0026ge;\u0026thinsp;1 open‑text comment (mean\u0026thinsp;=\u0026thinsp;137 words, range 13\u0026ndash;674). Using reflexive thematic analysis (Braun \u0026amp; Clarke six‑step framework, double‑coded by HH and KA; kappa\u0026thinsp;=\u0026thinsp;0.82), four inter‑locking themes emerged:\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec17\" class=\"Section2\"\u003e\u003ch2\u003eTheme 1: Self-doubt (72% of comments)\u003c/h2\u003e\u003cp\u003e\u0026ldquo;I was told the pain was in my head so many times I began to question my sanity.\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;Eight doctors later I still don\u0026rsquo;t have a laparoscopy date.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThe narrative of disbelief translated into delayed care and internalized self‑blame; 86.5% (409/473) also endorsed dismissal in the closed‑ended item.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec18\" class=\"Section2\"\u003e\u003ch2\u003eTheme 2: Identity loss \u0026amp; social withdrawal (54% of comments)\u003c/h2\u003e\u003cp\u003e\u0026ldquo;I\u0026rsquo;ve quit hobbies, lost friends, even missed my sister\u0026rsquo;s wedding because of flare‑ups.\u0026rdquo;\u003c/p\u003e\u003cp\u003eWomen described shrinking social circles, interrupted careers, and difficulty planning life milestones [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e].\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec19\" class=\"Section2\"\u003e\u003ch2\u003eTheme 3: Diagnostic limbo anxiety (41% of comments)\u003c/h2\u003e\u003cp\u003e\u0026ldquo;Living in purgatory\u0026mdash;too sick to function, not \u0026lsquo;sick enough\u0026rsquo; for surgery.\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;I oscillate daily between hope and despair.\u0026rdquo;\u003c/p\u003e\u003cp\u003eThese accounts came almost exclusively from the symptomatic‑undiagnosed group, highlighting a unique psychological burden not captured by pain scores alone.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec20\" class=\"Section2\"\u003e\u003ch2\u003eTheme 4: Resilience \u0026amp; advocacy (37% of comments)\u003c/h2\u003e\u003cp\u003e\u0026ldquo;I\u0026rsquo;m now the friend who tells others to push for imaging.\u0026rdquo;\u003c/p\u003e\u003cp\u003e\u0026ldquo;Online support groups have saved my sanity.\u0026rdquo;\u003c/p\u003e\u003cp\u003eDespite systemic barriers, many respondents channeled frustration into self‑education, peer support, and policy advocacy, aligning with emerging mind\u0026ndash;body and self‑management interventions.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec21\" class=\"Section2\"\u003e\u003ch2\u003eTheme 5: Gratitude for being asked (36% of comments)\u003c/h2\u003e\u003cp\u003eMore than one‑third of commenters spontaneously thanked the researchers for \u0026ldquo;finally asking these questions,\u0026rdquo; underscoring both the acceptability of the survey and the paucity of patient‑centered inquiry in endometriosis research.\u003c/p\u003e\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study is the first to compare pain, perceived dismissal, and depressive symptoms across diagnosed, symptomatic undiagnosed, and unaffected women in a single survey. Key finding: Undiagnosed individuals bear the heaviest physical and psychological burden, exceeding that of confirmed patients\u0026mdash;consistent with qualitative work describing diagnostic limbo as \u0026ldquo;the worst of both worlds\u0026rdquo; [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e] and a 2023 Dutch registry report linking diagnostic delay to higher PHQ 9 scores [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. The 86.5% dismissal rate (Theme 1) dwarfs earlier single center estimates of 40\u0026ndash;60% [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e], underscoring a pervasive breakdown in clinician patient trust.\u003c/p\u003e\u003cp\u003eOur effect sizes (g\u0026thinsp;=\u0026thinsp;1.7 for pain; V\u0026thinsp;=\u0026thinsp;0.74 for dismissal) surpass those in recent multi country studies [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e], underscoring the need for earlier recognition. A 2024 scoping review of primary‑care interventions found that targeted pelvic‑pain screening tools can shorten diagnostic intervals by \u0026asymp;\u0026thinsp;12\u0026ndash;14 months on average (preprint) [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. Organization‑wide trauma‑informed‑care programs in women\u0026rsquo;s‑health clinics lowered perceived dismissal scores and improved treatment adherence in a 2023\u0026ndash;24 mixed‑methods evaluation [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e].\u003c/p\u003e\u003cp\u003ePain scores\u0026thinsp;\u0026ge;\u0026thinsp;7 on a 0\u0026ndash;10 scale are typically classified as \u0026ldquo;severe\u0026rdquo; in acute‑care triage and correlate with substantial functional impairment. Accordingly, any woman persistently rating pelvic pain at 7 or 8\u0026mdash;not to mention the 8% in our sample who selected 9 or 10\u0026mdash;should trigger an immediate, structured evaluation for endometriosis or other underlying pathology rather than routine reassurance. Importantly, severe pelvic pain is not confined to adulthood. Up to 40% of symptomatic adolescents in population studies already harbor endometriotic lesions, and diagnostic delay beginning in the teen years predicts more extensive disease at the time of eventual surgery [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. Hence, a teenager who repeatedly reports pain\u0026thinsp;\u0026ge;\u0026thinsp;7 / 10\u0026mdash;or who misses school or sports because of menses\u0026mdash;warrants the same structured evaluation we recommend for adults rather than reassurance that \u0026ldquo;it will get better with age.\u0026rdquo;\u003c/p\u003e\u003cp\u003eMind‑body programs reduce dysmenorrhea severity [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e], and evidence on coping strategies in endometriosis [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e] supports these resilience‑building approaches. These approaches (Theme 4) show promise for mitigating depressive burden.\u003c/p\u003e\u003cdiv id=\"Sec23\" class=\"Section2\"\u003e\u003ch2\u003eClinical red flags\u003c/h2\u003e\u003cp\u003eLarge effect sizes (pain g\u0026thinsp;=\u0026thinsp;1.7; dismissal V\u0026thinsp;=\u0026thinsp;0.74) confirm that high self‑reported pain and experiences of dismissal cluster together and predict depressive burden.\u003c/p\u003e\u003cp\u003ePain\u0026thinsp;\u0026ge;\u0026thinsp;7 / 10 is categorized as severe in acute‑care triage; in our data, 58% of symptomatic‑undiagnosed participants fell into that range. Any woman\u0026mdash;including adolescents\u0026mdash;who persistently rates pelvic pain at 7 or higher, or whose pain interferes with daily functioning, should receive an immediate, structured evaluation for endometriosis or other underlying pathology, rather than routine reassurance. Up to 40% of symptomatic teens already harbor laparoscopically confirmed lesions, and early delay predicts more extensive disease at surgery [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. Updated 2025 national clinical guidelines now recommend expedited referral to a gynecologist for any woman whose pelvic pain interferes with work, school, or daily function [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e].\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec24\" class=\"Section2\"\u003e\u003ch2\u003eImplementable tools\u003c/h2\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Taba\" border=\"1\"\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eGap identified\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003ePragmatic solution\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eEvidence/support\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePain dismissed as \u0026ldquo;normal\u0026rdquo;\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003e2question pelvicpain screener\u003c/b\u003e\u0026nbsp;at annual visits (e.g., \u0026ldquo;Average pain on most periods?\u0026rdquo; \u0026ldquo;Does pain interfere with school/work?\u0026rdquo;). Positive\u0026thinsp;=\u0026thinsp;expedited referral.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eShortened diagnostic delay by 14\u0026nbsp;months\u0026nbsp;[\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e].\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eHigh dismissal rate\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eTraumainformed communication training\u003c/b\u003e\u0026nbsp;for primarycare and ED staff; scripts that validate pain before ruling out functional causes.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eImproved adherence \u0026amp; lower perceived dismissal\u0026nbsp;[\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e].\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMentalhealth neglect\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eIntegrate a\u0026nbsp;\u003cb\u003e7item PHQ-9\u003c/b\u003e\u0026nbsp;into gynecology intake forms; refer scores \u0026ge;\u0026nbsp;10 for sameday counselling.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eDepression comorbidity strong (g\u0026nbsp;=\u0026nbsp;0.69).\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eLimited selfmanagement guidance\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eOffer vetted\u0026nbsp;\u003cb\u003emind\u0026ndash;body programs\u003c/b\u003e\u0026nbsp;and digital tracking apps at diagnosis or suspicion.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eMind\u0026ndash;body reduces dysmenorrhea\u0026nbsp;[\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]; apps improve symptom tracking\u0026nbsp;[\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e].\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAlternative analgesia interest\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eProvide evidencebased counseling on\u0026nbsp;\u003cb\u003eadjunctive cannabidiol\u003c/b\u003e\u0026nbsp;and other nonsurgical options.\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eDoubleblind trial showed significant pain relief\u0026nbsp;[\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]; nonsurgical review\u0026nbsp;[\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e].\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cdiv id=\"Sec25\" class=\"Section3\"\u003e\u003ch2\u003eLimitations\u003c/h2\u003e\u003cp\u003eConvenience sampling and online data collection may limit generalizability, and healthcare experiences and diagnostic pathways could differ across cultural contexts. reCAPTCHA mitigated\u0026mdash;but did not eliminate\u0026mdash;duplicate or bot entries. The prorated PHQ‑9 may misestimate severity when appetite or sleep changes dominate, and recall bias is a well‑known concern in chronic‑pelvic‑pain research [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. The modest control sample (n\u0026thinsp;=\u0026thinsp;47) may influence the precision of between-group comparisons.\u003c/p\u003e\u003cp\u003eOur reference group included only 47 menstruating individuals, a sample that inevitably broadens confidence intervals and may bias effect estimates toward both inflation and attenuation. When we bootstrapped the control data to n\u0026thinsp;=\u0026thinsp;100 across 1,000 iterations and re-ran the one-way ANOVA, the direction of all pairwise contrasts remained identical and effect sizes deviated by \u0026le;\u0026thinsp;0.03 Hedges g, indicating that the small comparator arm did not materially alter the conclusions.\u003c/p\u003e\u003cp\u003eAlthough convenience sampling via online platforms can introduce selection bias, the large, well-powered sample (n\u0026thinsp;=\u0026thinsp;473), use of validated instruments (PHQ-9, Perceived Dismissal Scale), and alignment between quantitative outcomes and qualitative themes substantially strengthen the credibility of these findings. Moreover, online recruitment enabled access to a geographically diverse, real-world population that reflects how many endometriosis patients seek support and information outside of clinical settings, enhancing the applicability of these results for both clinical care and public health.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec26\" class=\"Section3\"\u003e\u003ch2\u003eFuture research\u003c/h2\u003e\u003cp\u003eProspective cohorts should integrate emerging biomarkers [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e] and address predisposing factors from earlier reviews [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. Trials combining screening with digital self‑management apps are warranted [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. Future studies should explore multicenter recruitment strategies and incorporate non-online populations to further validate these findings across diverse healthcare settings.\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"Conclusions","content":"\u003cp\u003eDiagnostic delay magnifies pain, depressive symptoms, and\u0026mdash;per qualitative accounts\u0026mdash;a profound sense of dismissal and identity loss. Early diagnosis is therefore a psychological imperative and positions patients to benefit from emerging non‑surgical therapies [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Health care systems must prioritize early screening, empathetic listening, and integrated mental health support for suspected endometriosis. These results highlight clear, actionable opportunities to reduce diagnostic delays and improve care pathways, supporting the urgent need for trauma-informed screening protocols in primary care.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eEthics approval and consent to participate\u003c/p\u003e\n\u003cp\u003eThis study was reviewed and deemed exempt under Category 2 of the U.S. Department of Health \u0026amp; Human Services Policy for the Protection of Human Subjects (45 CFR 46.104 \u0026sect;(d)(2)(i)) by Sterling Institutional Review Board, Columbia, MD, USA (IRB#14013, approved 18 June 2025). Electronic informed consent was obtained on the first page of the survey; proceeding to the questionnaire constituted consent to participate.\u003c/p\u003e\n\u003cp\u003eConsent for publication\u003c/p\u003e\n\u003cp\u003eNot applicable (no identifying data are published).\u003c/p\u003e\n\u003cp\u003eAvailability of data and materials\u003c/p\u003e\n\u003cp\u003eDe‑identified datasets and analysis code are available from the corresponding author upon reasonable request.\u003c/p\u003e\n\u003cp\u003eCompeting interests\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003eFunding\u003c/p\u003e\n\u003cp\u003eNo external funding was received for this study.\u003c/p\u003e\n\u003cp\u003eAuthors\u0026apos; contributions\u003c/p\u003e\n\u003cp\u003eH.H. conceived the study, designed the survey, analysed the data, and drafted the manuscript. C.J. conducted the literature review. K.A. verified statistical analyses and created the visualisations. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003eAcknowledgements\u003c/p\u003e\n\u003cp\u003eWe thank the Endometriosis Association and Reddit r/Endo communities for sharing the survey link and the 20 pilot participants for constructive feedback.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eZondervan KT, Becker CM, Missmer SA, Endometriosis. Nat Rev Endocrinol. 2022;18:665\u0026ndash;82.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eGreene R, Stratton P, Cleary SD, et al. Diagnostic experience of endometriosis: a qualitative study. Fertil Steril. 2009;91:32\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eHudelist G, Fritzer N, Thomas A, et al. Diagnostic delay for endometriosis in Austria and Germany. Hum Reprod. 2012;27:3412\u0026ndash;6.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eArmour M, Sinclair J, Chalmers K, et al. The cost of endometriosis on quality of life and productivity. J Womens Health. 2023;32:451\u0026ndash;60.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eZondervan KT, Becker CM. Advances in personalised care for endometriosis. NPJ Womens Health. 2024;1:7.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eSoliman AM, Coyne KS, Zaiser E, et al. The humanistic burden of endometriosis on HRQoL. J Clin Med. 2021;10:2763.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDion ML, Lundy H, Dillon J, et al. Medical gaslighting: patients\u0026rsquo; perceptions of symptom dismissal. Qual Health Res. 2022;32:1321\u0026ndash;33.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eTaylor HS, Giudice LC, Lessey BA. Endometriosis and mental health: mechanisms and management. Fertil Steril. 2021;115:359\u0026ndash;68.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eGiudice LC, Endometriosis. N Engl J Med. 2010;362:2389\u0026ndash;98.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eNnoaham KE, Hummelshoj L, Webster P, et al. Impact of endometriosis on quality of life: a 10-country study. Fertil Steril. 2011;96:366\u0026ndash;73.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBuggio L, Somigliana E, Vercellini P. Endometriosis and mental health: an updated review. Hum Reprod Update. 2021;27:425\u0026ndash;36.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDion ML, Vincent K. Central sensitisation in endometriosis-associated pain. Pain Rep. 2023;8:e1101.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBioder V, Başol G, Kaya A, et al. Nonsurgical management options for endometriosis. Best Pract Res Clin Obstet Gynaecol. 2024;92:102\u0026ndash;18.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eColquitt JL, Estevao H, Williams C, et al. Digital self-management apps for endometriosis: a scoping review. JMIR Mhealth Uhealth. 2023;11:e46812.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eJohnson NP, Hummelshoj L, Adamson GD, et al. WES consensus on classification of endometriosis. Reprod Sci. 2017;24:269\u0026ndash;82.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDunselman GAJ, Vermeulen N, Becker C, et al. ESHRE guideline: management of women with endometriosis. Hum Reprod. 2014;29:400\u0026ndash;12.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003evon Elm E, Altman DG, Egger M, et al. The STROBE statement. Int J Surg. 2014;12:1495\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eWorld Health Organization. Clinical management of chronic pelvic pain. Geneva: WHO; 2022.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eKroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16:606\u0026ndash;13.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eJones K, Jones P, Smith L, et al. Development of the Medical Dismissal Scale. Patient Educ Couns. 2019;102:1237\u0026ndash;43.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eSpringer Nature. BMC editorial policies and processes. 2025.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eFourquet J, B\u0026aacute;ez L, Figueroa M, et al. Endometriosis symptoms and work productivity loss. Fertil Steril. 2011;96:107\u0026ndash;12.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDenny E, Mann CH. Dyspareunia in endometriosis: patient perspectives. BMC Womens Health. 2007;7:11.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003evan Barneveld V, Smink A, van Poelgeest M, et al. Longer diagnostic delay predicts worse outcomes. Reprod Sci. 2023;30:3121\u0026ndash;30.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eStefansd\u0026oacute;ttir B, Gu\u0026eth;mundsd\u0026oacute;ttir T, Kristj\u0026aacute;nsd\u0026oacute;ttir G, et al. Burden of endometriosis in the Nordic countries. Acta Obstet Gynecol Scand. 2022;101:599\u0026ndash;608.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eFryer J, Mason-Jones AJ, Woodward A. Diagnostic delay for endometriosis: a scoping review. medRxiv. 2024. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1101/2024.01.08.24300988\u003c/span\u003e\u003cspan address=\"10.1101/2024.01.08.24300988\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eLewis NV, Bierce ABZ, Feder GS, et al. Trauma-informed approaches in primary healthcare. Health Soc Care Community. 2023;2023:4475114.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eArmour M, Sinclair J, Chalmers K, et al. Mind-body interventions for dysmenorrhoea and endometriosis pain. BMJ Open. 2022;12:e062187.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eFacchin F, Barbara G, Buggio L, et al. Coping strategies in endometriosis-related pain. J Psychosom Obstet Gynaecol. 2015;36:135\u0026ndash;41.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eKiesel L, Sourial S, Mueller MD, et al. Chronic pelvic pain: contemporary diagnostic challenges. Nat Rev Dis Primers. 2023;9:48.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eLatthe PM, Mignini L, Gray R, et al. Factors predisposing to chronic pelvic pain. BMJ. 2006;332:749\u0026ndash;55.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eKoninckx PR, Ussia A, Stepanian A, et al. Evidence-based management of endometriosis: Bayesian thinking. J Clin Med. 2025;14:248.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eGagne L, Smith E, Brown R, et al. Adjunctive cannabidiol for endometriosis pain. Pain. 2024;165:2104\u0026ndash;13.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eKiesel LA, Sourial S, Lee C, et al. Early biomarkers for endometriosis. Reprod Sci. 2024;31:112\u0026ndash;20.\u003c/span\u003e\u003c/li\u003e\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":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Endometriosis, Diagnostic delay, Depression, Pelvic pain, Perceived dismissal, Women’s health, Cross-sectional survey","lastPublishedDoi":"10.21203/rs.3.rs-6916435/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6916435/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003eEndometriosis affects\u0026thinsp;~\u0026thinsp;10% of women, yet diagnosis is delayed 7\u0026ndash;10 years, exposing patients to prolonged pain, clinician dismissal, and worsening mental health. Comparative data across diagnostic stages are limited.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eA cross-sectional, anonymous online survey (Feb\u0026ndash;Apr 2025) recruited adults assigned female at birth who currently identify as female (\u0026ge;\u0026thinsp;18 y) via targeted social-media posts. Respondents self-classified as (i) surgically/clinically diagnosed with endometriosis, (ii) symptomatic but undiagnosed, or (iii) asymptomatic controls. Instruments comprised a 0\u0026ndash;10 pelvic-pain scale, two-item Perceived Dismissal Scale, and PHQ-9 (α\u0026thinsp;=\u0026thinsp;0.88). Group differences were tested with one-way ANOVA (Bonferroni) and χ\u0026sup2;; Hedges g and Cram\u0026eacute;r V quantified effect sizes.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eAmong 473 participants (diagnosed\u0026thinsp;=\u0026thinsp;332; symptomatic-undiagnosed\u0026thinsp;=\u0026thinsp;94; controls\u0026thinsp;=\u0026thinsp;47), pain was highest in the symptomatic-undiagnosed group (7.8\u0026thinsp;\u0026plusmn;\u0026thinsp;1.8) versus diagnosed (7.7\u0026thinsp;\u0026plusmn;\u0026thinsp;1.9) and controls (4.5\u0026thinsp;\u0026plusmn;\u0026thinsp;2.3); F(2,470)\u0026thinsp;=\u0026thinsp;158, p\u0026thinsp;\u0026lt;\u0026thinsp;0.001, g\u0026thinsp;=\u0026thinsp;1.71. Depressive burden mirrored this pattern (PHQ-9\u0026thinsp;=\u0026thinsp;8.4\u0026thinsp;\u0026plusmn;\u0026thinsp;5.0 vs 7.6\u0026thinsp;\u0026plusmn;\u0026thinsp;4.9 and 5.3\u0026thinsp;\u0026plusmn;\u0026thinsp;4.1); F(2,470)\u0026thinsp;=\u0026thinsp;12.4, p\u0026thinsp;\u0026lt;\u0026thinsp;0.001, g\u0026thinsp;=\u0026thinsp;0.69. Perceived dismissal was reported by 92% of symptomatic-undiagnosed, 86.5% of diagnosed, and 10% of controls (χ\u0026sup2;=255, p\u0026thinsp;\u0026lt;\u0026thinsp;0.001, V\u0026thinsp;=\u0026thinsp;0.74).\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e\u003cp\u003eIndividuals trapped in diagnostic limbo shoulder the heaviest pain and depressive load, underscoring the mental-health cost of delayed recognition. Integrating routine pelvic-pain and depression screening with trauma-informed communication in primary care may hasten diagnosis and reduce burden.\u003c/p\u003e","manuscriptTitle":"Diagnostic Limbo Hurts: Pain and Mental‑Health Burden in Diagnosed, Suspected and Unaffected Menstruators","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-08-07 04:12:25","doi":"10.21203/rs.3.rs-6916435/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":"8d393e1d-a683-4c83-9d96-d45a0aed8e1a","owner":[],"postedDate":"August 7th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-10-20T00:08:08+00:00","versionOfRecord":[],"versionCreatedAt":"2025-08-07 04:12:25","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6916435","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6916435","identity":"rs-6916435","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}

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