Barriers to Timely Diagnosis of Vulvar Lichen Sclerosus: A Patient-Centered Analysis of Diagnostic Delays

Barriers to Timely Diagnosis of Vulvar Lichen Sclerosus: A Patient-Centered Analysis of Diagnostic Delays | 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 Barriers to Timely Diagnosis of Vulvar Lichen Sclerosus: A Patient-Centered Analysis of Diagnostic Delays Trina Nguyen, Annalise Vaccarello, Elyssa Kim, Kayley Erickson, and 1 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7359001/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 Vulvar lichen sclerosus (VLS) is a chronic inflammatory dermatosis of the genital area which causes pruritus, pain, and skin changes and which may progress to squamous cell carcinoma. Diagnosis occurs, on average, 4.6 years after symptom onset, impacting quality of life. This study explores factors contributing to diagnostic delay. An electronic survey was distributed via the r/lichensclerosus subreddit and the Lichen Sclerosus Support Group on Facebook. Adult, English-speaking patients with a reported physician's diagnosis of VLS were included. We received 82 eligible responses. All participants (100%) experienced symptoms before diagnosis, and 87.8% sought medical care. Many participants (67.9%) felt that time until their diagnosis was too long. Vulvar itching was the most common symptom (86.6%), and those with itching were 7.6 times more likely than those with other symptoms to seek care (p = 0.04). Common reasons for delaying care included embarrassment (43.9%), believing symptoms were normal (43.9%), shame (24.6%), fear of physician visits (21.1%), and doubt in physicians' ability to diagnose/treat (21.1%).Vaginal candidiasis was the most frequently reported initial misdiagnosis (44.9%). Interestingly, women reporting pain with sex were 9.8 times more likely to be misdiagnosed compared to other symptoms. This study defines varied barriers to timely VLS diagnosis, suggesting the need for multi-faceted interventions to reduce delays. vulvar lichen sclerosus Introduction Vulvar lichen sclerosus (VLS) is a chronic inflammatory disorder affecting the skin of the vulva and anus [ 1 ]. Patients may have pruritus, irritation, and pain in affected areas [ 1 ]. Visible skin changes may include altered pigmentation, skin that is shiny, thinning, or wrinkled [ 1 ]. If left undiagnosed or untreated, VLS can result in significant scarring, causing deformity of the vulva and narrowing of the introitus [ 2 ]. VLS can cause marked impairment in quality of life of those affected, with patients reporting negative impact in areas of sexuality, anxiety, and activities of daily living [ 3 ]. The condition has also been implicated as a risk factor for malignant squamous cell neoplasia of the vulva [ 2 ]. Despite negative impact on quality of life as well as risk for neoplasia, there is often delay until patients receive an official VLS diagnosis, with an average delay of 4.6 years [ 4 ]. It is unclear what factors may be contributing to this temporal lag. As such, this study aims to characterize factors leading to diagnostic delay and explore diagnostic outcomes of VLS. Identifying such barriers can increase earlier diagnosis and intervention, which can positively impact patient quality of life and mitigate malignancy risk. Materials and Methods In this voluntary study, international participants recruited from two lichen sclerosus online support groups completed an anonymous electronic questionnaire from August 2023 to November 2023. The questionnaire link was posted to the r/lichensclerosus subreddit on the social media website Reddit and the Lichen Sclerosus Support Group on Facebook in August 2023. Patients who reported fluency in English, being over the age of 18, and having a diagnosis of vulvar lichen sclerosus from a licensed physician were eligible to participate. The objective of this study was to explore reasons for delay in vulvar lichen sclerosus diagnosis. Questions regarding symptoms experienced, number of medical professionals seen before a proper diagnosis, misdiagnosis, use of online resources, and patient-perceived factors that could have contributed to an earlier diagnosis were included. Both descriptive statistics and multivariable statistics (ANOVA, chi-square tests, and t-tests) were used to analyze data using STATA [ 5 ]. This study was exempt from institutional review board approval by University Hospitals Institutional Review Board (STUDY20230724). The survey was administered in English and data were collected and stored using REDCap [ 6 , 7 ]. Results We received a total of 98 responses. After excluding surveys with <10% completion, 82 responses were deemed eligible (83.7%). All participants were over 18 years of age and spoke English. All participants reported receiving an official diagnosis of VLS from a physician. Additionally, all participants (n=82/82, 100%) experienced symptoms prior to their VLS diagnosis. Most participants 72/82 (87.8%) sought medical care for their VLS symptoms. The remaining participants (10/82, 12.2%) had their VLS discovered on a routine exam. Many participants (55/81, 67.9%) felt that the time it took for them to receive an official diagnosis of VLS was not appropriate (one participant did not answer this question). Symptomatology of Participants Participants were asked to report the symptoms they experienced prior to diagnosis. Notably, vulvar itching was the most commonly experienced symptom (71/82, 86.6%). Patients who experienced itching as a symptom were 7.6x more likely than those with other symptoms to seek medical care as opposed to having their disease recognized on a routine exam (p=0.04). Other frequently reported symptoms include white/shiny scar-like skin (56/82, 68.3%), vulvar irritation/burning (51/82, 62.2%), vulvar fissures (46/82, 56.1%), red/inflamed skin (46/82, 56.1%), skin fragility (44/82, 53.7%), and change to the general appearance of the genitals (42/82, 51.2%) (Table 1) . Table 1. Symptoms Experienced by Participants Prior to a Formal Medical Diagnosis Symptom Number Who Experienced Percent Who Experienced Vulvar Itching 71 71/82 (86.6%) White/shiny scar-like skin 56 56/82 (68.3%) Vulvar Irritation/Burning 51 51/82 (62.2%) Vulvar Fissures 46 46/82 (56.1%) Red/Inflamed Skin 46 46/82 (56.1%) Skin Fragility 44 44/82 (53.7%) Changes to the general appearance of the genitals 42 42/82 (51.2%) Vulvar Dryness 39 39/82 (47.6%) Vulvar Soreness 38 38/82 (46.3%) Persistent or recurrent genital pain that occurs just before, during, or after sex 38 38/82 (46.3%) Vulvar blisters/open sores 23 23/82 (28.0%) Vulvar Bleeding 21 21/82 (25.6%) Vulvar Bruising 14 14/82 (17.0%) Other* 8 8/82 (9.8%) Patient Induced Delays to Seeking Healthcare Out of 72 participants who sought out medical care, 57 (79.2%) reported a delay between when they first noticed symptoms and when they first pursued medical attention. Among these 57, common reasons why patients delayed seeking care included feelings of embarrassment (n=27, 43.9%), the belief that their symptoms were normal (n=27, 43.9%), feelings of shame (n=14, 24.6%), fear of physician consultation (n=12, 21.1%), and belief that the physician would not be able to diagnose/treat the condition (n=12, 21.1%). Less common barriers included logistical challenges, such as the inability to schedule an appointment (n=11, 19.3%), and affordability of a physician visit (n=4, 7%) ( Table 2 ). Table 2. Participant Reported Reasons for Delay in Medical Care Reason Number (%) Feelings of embarrassment 25/57 (43.9%) Believed symptoms were normal 25/57 (43.9%) Other - Please Fill in the Blank 15/57 (26.3%) Feelings of shame 14/57 (24.6%) Afraid to see a physician 12/57 (21.1%) Did not believe physician would be able to diagnose/treat 12/57 (21.1%) Unable to schedule an appointment 11/57 (19.3%) Did not have access to a physician 6/57 (10.5%) Affordability of a physician-visit 4/57 (7.0%) Misdiagnosis Another factor that could contribute to delay in VLS diagnosis is misdiagnosis. Out of 72 participants who sought care for symptoms, 18 (25.0%) were diagnosed during their initial visit with a physician, while 54 (75.0%) were only diagnosed after multiple visits or seeing multiple providers. Among those with delayed diagnosis, 49/54 (90.7%) reported being misdiagnosed. Vaginal candidiasis was the most common misdiagnosis (22/49, 44.9%). Other misdiagnoses included sexually transmitted infections (4/49, 8.2%), dermatitis (3/49, 6.1%), vaginal atrophy (3/49, 6.1%), bacterial infections (2/49, 4.1%), pelvic floor dysfunction (2/49, 4.1%), and vulvodynia (2/49, 4.1%) ( Table 3 ). Women reporting pain with sex were 9.8 times more likely to be misdiagnosed compared to women with any other symptom (p=0.03). Patients were given the opportunity to submit comments regarding why they thought misdiagnosis occurred. Patient-reported factors included physician unawareness, atypical or early symptoms, physician indifference, incomplete physical examination, and insufficient history-taking. Table 3. Misdiagnoses for Vulvar Lichen Sclerosus Condition Number (Total=49) Yeast Infection 22 STI* 4 Dermatitis 3 Vaginal Atrophy 3 Bacterial Infection 2 Pelvic Floor Dysfunction 2 Vulvodynia 2 Ecchymosis 1 Hemorrhoids 1 Narrow Introitus 1 Poor Hygiene 1 Pregnancy Symptom 1 Psoriasis 1 Scar Tissue 1 Unspecified Rash 1 Vaginal Stenosis 1 *Two Patients did not specify Characteristics of Physician Diagnostic Outcomes Of the 54 participants who did not have their VLS diagnosed immediately at their first visit with a provider, the maximum length of time to diagnosis after first seeking care was 300 months (25 years) and the minimum was 0.5 months (2 weeks). The mean length of time was 48.4 months while the median was 24 months. The average number of physicians seen by women who were not diagnosed immediately at their first visit was 2.88, with a median of 3. From 82 respondents, a majority of patients (55; 67.1%) were diagnosed by gynecologists, followed by primary care providers (PCPs; 17; 20.7%), dermatologists (8; 9.8%), and other specialties (2; 2.4%). Those who had their VLS diagnosed on a routine exam were all diagnosed by either gynecologists (7/10) or PCPs (3/10). Of the 8 patients who were diagnosed by dermatologists, 50% saw dermatologists as the 3rd physician or more. The two patients who consulted dermatology as the initial provider received an immediate accurate diagnosis. Table 4. Physicians Responsible for Diagnosing Participants Physician Type Number Diagnosed Percent Diagnosed Gynecologist 55 55/82 (67.1%) Primary Care Physician 17 17/82 (20.7%) Dermatologist 8 8/82 (9.8%) Urologist 1 1/82 (1.2%) Other 1 1/82 (1.2%) Use of Online Resources By Participants Participants were also polled regarding their usage of online resources to investigate their symptoms. 50/82 (61.0%) of women used online resources to investigate their symptoms. Many of the women who used online resources (29/50, 58.0%) reported that use of these resources helped prompt them to visit a physician. Accordingly, women who used online resources were 4.39 times more likely than those who did not use online resources to have sought medical help for their symptoms as opposed to having their disease recognized on routine exam (p=0.04). Furthermore, women who used online resources to research their symptoms prior to visiting a physician experienced less delay between seeking medical care for their symptoms and being given a diagnosis of VLS (average time 29.9 months) than women who did not use online resources to research their symptoms (average time 45.6 months), although this was not a statistically significant finding. Discussion Despite the significant impact of VLS on quality of life and its associated risk for malignant transformation, many patients experience prolonged diagnostic timelines. This study explores reasons why patients may be experiencing diagnostic delay, including patient-induced factors and misdiagnosis. This study also characterized symptomatology of VLS and identified both healthcare-seeking and receiving behavior, which also influences diagnostic outcomes. Regarding symptomatology, pruritus was the most commonly reported symptom, with affected individuals significantly more likely to seek medical attention compared to those experiencing other symptoms. This suggests itching is seen as an abnormal indication of disease process, thus prompting patients to visit a physician. While pruritus is the most apparent indication of disease process, additional manifestations such as white or shiny scar-like skin, irritation, and fissuring are also clinical signs of disease, but are less likely to prompt patients to seek care. Increased education regarding the full spectrum of VLS manifestations for patients is crucial to improving early recognition and diagnosis. Additionally, a substantial proportion of patients delayed seeking medical care due to personal factors, which included embarrassment or shame, misconceptions regarding symptom normality, and fear of physician consultation. Early recognition of disease thus relies heavily on reducing the stigma surrounding vulvar disease. Reducing stigma around these conditions requires normalizing conversations about vulvar health in medicine and society and addressing the cultural taboos that have historically led to shame, dismissal, and inadequate care for vulvar health concerns. Among patients who sought medical care, misdiagnosis was also a significant factor contributing to delayed diagnosis, with many patients initially receiving an incorrect diagnosis, most commonly vaginal candidiasis. Women who experienced pain related to intercourse were also more likely to be misdiagnosed. This may indicate a gap in clinical awareness and diagnostic accuracy among healthcare providers. Notably, incomplete physical examinations and insufficient history-taking were frequently cited by patients as perceived reasons for misdiagnosis. Enhanced physician awareness of the clinical features of VLS and thorough examination practices could mitigate these challenges. Regarding characteristics of physician diagnosis, the majority of VLS diagnoses were made by gynecologists, followed by primary care physicians. Furthermore, none of our patients were diagnosed by dermatologists on routine exams. However, dermatologists were often consulted later in the diagnostic process, and the patients who did consult dermatology first were given an immediate accurate diagnosis. This suggests that increased dermatology involvement could improve early detection. In addition, this also highlights an opportunity for dermatologists to enhance their role in diagnosing and managing VLS and to consider incorporating genital examinations into practice to help reduce time to diagnosis and improve patient care. Interestingly, patients who researched their symptoms online were significantly more likely to pursue medical care. This underscores the value of accessible and comprehensive online educational materials in empowering patients to advocate for their health and seek timely medical evaluations. Limitations Limitations of the study include lack of official provider diagnosis, as responses were self-reported by survey participants. Additionally, participants responding to the online survey may have been more likely to experience frustration with their diagnostic journey. Individuals who were diagnosed promptly may not have felt the need to engage in online forums or participate in the study. However, given that VLS is a relatively uncommon disease, an online survey was a useful approach to reach a sufficient number of respondents and gain meaningful insights into diagnostic delays. Conclusion Overall, there are many complexities that contribute to delays in VLS diagnosis. As such, multi-faceted interventions are required to reduce diagnostic delay. Key recommendations include enhancing public and physician awareness of VLS symptoms, reducing stigma surrounding genital health concerns, increased dermatology involvement in VLS, and expanding online educational resources to empower patient self-advocacy. Future work can stratify data based on groupings, such as ethnicity, age, or nationality to see if diagnostic trends vary, or explore targeted strategies for early detection. Abbreviations VLS = Vulvar Lichen Sclerosus Declarations The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. TN, AV, KE, TM contributed to study conception and research design. TN, AV, EK participated in data collection and analysis. The manuscript was written by TN. TN, AV, EK, KE, TM contributed to review and editing of the manuscript. All authors read and approved the final manuscript. Author Contribution TN, AV, KE, TM contributed to study conception and research design. TN, AV, EK participated in data collection and analysis. The manuscript was written by TN. TN, AV, EK, KE, TM contributed to review and editing of the manuscript. All authors read and approved the final manuscript. References Kraus CN. Vulvar Lichen Sclerosus. JAMA Dermatol . 2022;158(9):1088. doi:10.1001/jamadermatol.2022.0359 Lee A, Fischer G. Diagnosis and Treatment of Vulvar Lichen Sclerosus: An Update for Dermatologists. Am J Clin Dermatol . 2018;19(5):695-706. doi:10.1007/s40257-018-0364-7 Wijaya M, Lee G, Fischer G. Quality of life of women with untreated vulval lichen sclerosus assessed with vulval quality of life index (VQLI). Australas J Dermatol . 2021;62(2):177-182. doi:10.1111/ajd.13530 Cooper SM, Gao XH, Powell JJ, Wojnarowska F. Does treatment of vulvar lichen sclerosus influence its prognosis?. Arch Dermatol . 2004;140(6):702-706. doi:10.1001/archderm.140.6.702 StataCorp. Stata Statistical Software: Release 18 . 2023. College Station, TX: StataCorp LLC. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform . 2009;42(2):377-381. doi:10.1016/j.jbi.2008.08.010 Harris PA, Taylor R, Minor BL, et al. The REDCap consortium: Building an international community of software platform partners. J Biomed Inform . 2019;95:103208. doi:10.1016/j.jbi.2019.103208 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. 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Patients may have pruritus, irritation, and pain in affected areas [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Visible skin changes may include altered pigmentation, skin that is shiny, thinning, or wrinkled [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. If left undiagnosed or untreated, VLS can result in significant scarring, causing deformity of the vulva and narrowing of the introitus [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. VLS can cause marked impairment in quality of life of those affected, with patients reporting negative impact in areas of sexuality, anxiety, and activities of daily living [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. The condition has also been implicated as a risk factor for malignant squamous cell neoplasia of the vulva [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eDespite negative impact on quality of life as well as risk for neoplasia, there is often delay until patients receive an official VLS diagnosis, with an average delay of 4.6 years [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. It is unclear what factors may be contributing to this temporal lag. As such, this study aims to characterize factors leading to diagnostic delay and explore diagnostic outcomes of VLS. Identifying such barriers can increase earlier diagnosis and intervention, which can positively impact patient quality of life and mitigate malignancy risk.\u003c/p\u003e"},{"header":"Materials and Methods","content":"\u003cp\u003eIn this voluntary study, international participants recruited from two lichen sclerosus online support groups completed an anonymous electronic questionnaire from August 2023 to November 2023. The questionnaire link was posted to the r/lichensclerosus subreddit on the social media website Reddit and the Lichen Sclerosus Support Group on Facebook in August 2023. Patients who reported fluency in English, being over the age of 18, and having a diagnosis of vulvar lichen sclerosus from a licensed physician were eligible to participate.\u003c/p\u003e\u003cp\u003eThe objective of this study was to explore reasons for delay in vulvar lichen sclerosus diagnosis. Questions regarding symptoms experienced, number of medical professionals seen before a proper diagnosis, misdiagnosis, use of online resources, and patient-perceived factors that could have contributed to an earlier diagnosis were included. Both descriptive statistics and multivariable statistics (ANOVA, chi-square tests, and t-tests) were used to analyze data using STATA [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e].\u003c/p\u003e\u003cp\u003e This study was exempt from institutional review board approval by University Hospitals Institutional Review Board (STUDY20230724). The survey was administered in English and data were collected and stored using REDCap [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e].\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eWe received a total of 98 responses. After excluding surveys with \u0026lt;10% completion, 82 responses were deemed eligible (83.7%). All participants were over 18 years of age and spoke English. All participants reported receiving an official diagnosis of VLS from a physician. Additionally, all participants (n=82/82, 100%) experienced symptoms prior to their VLS diagnosis. Most participants 72/82 (87.8%) sought medical care for their VLS symptoms. The remaining participants (10/82, 12.2%) had their VLS discovered on a routine exam. Many participants (55/81, 67.9%) felt that the time it took for them to receive an official diagnosis of VLS was not appropriate (one participant did not answer this question).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eSymptomatology of Participants\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants were asked to report the symptoms they experienced prior to diagnosis. Notably, vulvar itching was the most commonly experienced symptom (71/82, 86.6%). Patients who experienced itching as a symptom were 7.6x more likely than those with other symptoms to seek medical care as opposed to having their disease recognized on a routine exam (p=0.04). \u0026nbsp;Other frequently reported symptoms include white/shiny scar-like skin (56/82, 68.3%), vulvar irritation/burning (51/82, 62.2%), vulvar fissures (46/82, 56.1%), red/inflamed skin (46/82, 56.1%), skin fragility (44/82, 53.7%), and change to the general appearance of the genitals (42/82, 51.2%) \u003cstrong\u003e(Table 1)\u003c/strong\u003e. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1. Symptoms Experienced by Participants Prior to a Formal Medical Diagnosis\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"593\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSymptom\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber Who Experienced\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePercent Who Experienced\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eVulvar Itching\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e71\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e71/82 (86.6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eWhite/shiny scar-like skin\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e56\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e56/82 (68.3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eVulvar Irritation/Burning\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e51\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e51/82 (62.2%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eVulvar Fissures\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e46\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e46/82 (56.1%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eRed/Inflamed Skin\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e46\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e46/82 (56.1%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eSkin Fragility\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e44\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e44/82 (53.7%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eChanges to the general appearance of the genitals\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e42\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e42/82 (51.2%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eVulvar Dryness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e39\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e39/82 (47.6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eVulvar Soreness\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e38\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e38/82 (46.3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003ePersistent or recurrent genital pain that occurs just before, during, or after sex\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e38\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e38/82 (46.3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eVulvar blisters/open sores\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e23\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e23/82 (28.0%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eVulvar Bleeding\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e21\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e21/82 (25.6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eVulvar Bruising\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e14\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e14/82 (17.0%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 301px;\"\u003e\n \u003cp\u003eOther*\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 184px;\"\u003e\n \u003cp\u003e8/82 (9.8%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003ePatient Induced Delays to Seeking Healthcare\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eOut of 72 participants who sought out medical care, 57 (79.2%) reported a delay between when they first noticed symptoms and when they first pursued medical attention. Among these 57, common reasons why patients delayed seeking care included feelings of embarrassment (n=27, 43.9%), the belief that their symptoms were normal (n=27, 43.9%), feelings of shame (n=14, 24.6%), fear of physician consultation (n=12, 21.1%), and belief that the physician would not be able to diagnose/treat the condition (n=12, 21.1%). Less common barriers included logistical challenges, such as the inability to schedule an appointment (n=11, 19.3%), and affordability of a physician visit (n=4, 7%) (\u003cstrong\u003eTable 2\u003c/strong\u003e).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2. Participant Reported Reasons for Delay in Medical Care\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"624\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 338px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eReason\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber (%)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 338px;\"\u003e\n \u003cp\u003eFeelings of embarrassment\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e25/57 (43.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 338px;\"\u003e\n \u003cp\u003eBelieved symptoms were normal\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e25/57 (43.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 338px;\"\u003e\n \u003cp\u003eOther - Please Fill in the Blank\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e15/57 (26.3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 338px;\"\u003e\n \u003cp\u003eFeelings of shame\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e14/57 (24.6%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 338px;\"\u003e\n \u003cp\u003eAfraid to see a physician\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e12/57 (21.1%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 338px;\"\u003e\n \u003cp\u003eDid not believe physician would be able to diagnose/treat\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e12/57 (21.1%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 338px;\"\u003e\n \u003cp\u003eUnable to schedule an appointment\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e11/57 (19.3%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 338px;\"\u003e\n \u003cp\u003eDid not have access to a physician\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e6/57 (10.5%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 338px;\"\u003e\n \u003cp\u003eAffordability of a physician-visit\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e4/57 (7.0%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eMisdiagnosis\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAnother factor that could contribute to delay in VLS diagnosis is misdiagnosis. Out of\u0026nbsp;72 participants who sought care for symptoms, 18 (25.0%) were diagnosed during their initial visit with a physician, while 54 (75.0%) were only diagnosed after multiple visits or seeing multiple providers. Among those with delayed diagnosis, 49/54 (90.7%) reported being misdiagnosed. Vaginal candidiasis was the most common misdiagnosis (22/49, 44.9%). Other misdiagnoses included sexually transmitted infections (4/49, 8.2%), dermatitis (3/49, 6.1%), vaginal atrophy (3/49, 6.1%), bacterial infections (2/49, 4.1%), pelvic floor dysfunction (2/49, 4.1%), and vulvodynia (2/49, 4.1%) (\u003cstrong\u003eTable 3\u003c/strong\u003e). Women reporting pain with sex were 9.8 times more likely to be misdiagnosed compared to women with any other symptom (p=0.03). Patients were given the opportunity to submit comments regarding why they thought misdiagnosis occurred. Patient-reported factors included physician unawareness, atypical or early symptoms, physician indifference, incomplete physical examination, and insufficient history-taking.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3. Misdiagnoses for Vulvar Lichen Sclerosus\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"593\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCondition\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber (Total=49)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003eYeast Infection\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e22\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003eSTI*\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e4\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003eDermatitis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003eVaginal Atrophy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e3\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003eBacterial Infection\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003ePelvic Floor Dysfunction\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003eVulvodynia\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e2\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003eEcchymosis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003eHemorrhoids\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003eNarrow Introitus\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003ePoor Hygiene\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003ePregnancy Symptom\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003ePsoriasis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003eScar Tissue\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003eUnspecified Rash\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 297px;\"\u003e\n \u003cp\u003eVaginal Stenosis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 296px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e*Two Patients did not specify\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCharacteristics of Physician Diagnostic Outcomes\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eOf the 54 participants who did not have their VLS diagnosed immediately at their first visit with a provider, the maximum length of time to diagnosis after first seeking care was 300 months (25 years) and the minimum was 0.5 months (2 weeks). The mean length of time was 48.4 months while the median was 24 months. The average number of physicians seen by women who were not diagnosed immediately at their first visit was 2.88, with a median of 3.\u003c/p\u003e\n\u003cp\u003eFrom 82 respondents, a majority of patients (55; 67.1%) were diagnosed by gynecologists, followed by primary care providers (PCPs; 17; 20.7%), dermatologists (8; 9.8%), and other specialties (2; 2.4%). Those who had their VLS diagnosed on a routine exam were all diagnosed by either gynecologists (7/10) or PCPs (3/10). Of the 8 patients who were diagnosed by dermatologists, 50% saw dermatologists as the 3rd physician or more. The two patients who consulted dermatology as the initial provider received an immediate accurate diagnosis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 4. Physicians Responsible for Diagnosing Participants\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"592\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 200px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePhysician Type\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 196px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber Diagnosed\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 196px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePercent Diagnosed\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 200px;\"\u003e\n \u003cp\u003eGynecologist\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 196px;\"\u003e\n \u003cp\u003e55\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 196px;\"\u003e\n \u003cp\u003e55/82 (67.1%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 200px;\"\u003e\n \u003cp\u003ePrimary Care Physician\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 196px;\"\u003e\n \u003cp\u003e17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 196px;\"\u003e\n \u003cp\u003e17/82 (20.7%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 200px;\"\u003e\n \u003cp\u003eDermatologist\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 196px;\"\u003e\n \u003cp\u003e8\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 196px;\"\u003e\n \u003cp\u003e8/82 (9.8%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 200px;\"\u003e\n \u003cp\u003eUrologist\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 196px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 196px;\"\u003e\n \u003cp\u003e1/82 (1.2%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 200px;\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 196px;\"\u003e\n \u003cp\u003e1\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 196px;\"\u003e\n \u003cp\u003e1/82 (1.2%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eUse of Online Resources By Participants\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants were also polled regarding their usage of online resources to investigate their symptoms. 50/82 (61.0%) of women used online resources to investigate their symptoms. Many of the women who used online resources (29/50, 58.0%) reported that use of these resources helped prompt them to visit a physician. Accordingly, women who used online resources were 4.39 times more likely than those who did not use online resources to have sought medical help for their symptoms as opposed to having their disease recognized on routine exam (p=0.04). Furthermore, women who used online resources to research their symptoms prior to visiting a physician experienced less delay between seeking medical care for their symptoms and being given a diagnosis of VLS (average time 29.9 months) than women who did not use online resources to research their symptoms (average time 45.6 months), although this was not a statistically significant finding.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eDespite the significant impact of VLS on quality of life and its associated risk for malignant transformation, many patients experience prolonged diagnostic timelines. This study explores reasons why patients may be experiencing diagnostic delay, including patient-induced factors and misdiagnosis. This study also characterized symptomatology of VLS and identified both healthcare-seeking and receiving behavior, which also influences diagnostic outcomes.\u003c/p\u003e\u003cp\u003eRegarding symptomatology, pruritus was the most commonly reported symptom, with affected individuals significantly more likely to seek medical attention compared to those experiencing other symptoms. This suggests itching is seen as an abnormal indication of disease process, thus prompting patients to visit a physician. While pruritus is the most apparent indication of disease process, additional manifestations such as white or shiny scar-like skin, irritation, and fissuring are also clinical signs of disease, but are less likely to prompt patients to seek care. Increased education regarding the full spectrum of VLS manifestations for patients is crucial to improving early recognition and diagnosis.\u003c/p\u003e\u003cp\u003eAdditionally, a substantial proportion of patients delayed seeking medical care due to personal factors, which included embarrassment or shame, misconceptions regarding symptom normality, and fear of physician consultation. Early recognition of disease thus relies heavily on reducing the stigma surrounding vulvar disease. Reducing stigma around these conditions requires normalizing conversations about vulvar health in medicine and society and addressing the cultural taboos that have historically led to shame, dismissal, and inadequate care for vulvar health concerns.\u003c/p\u003e\u003cp\u003eAmong patients who sought medical care, misdiagnosis was also a significant factor contributing to delayed diagnosis, with many patients initially receiving an incorrect diagnosis, most commonly vaginal candidiasis. Women who experienced pain related to intercourse were also more likely to be misdiagnosed. This may indicate a gap in clinical awareness and diagnostic accuracy among healthcare providers. Notably, incomplete physical examinations and insufficient history-taking were frequently cited by patients as perceived reasons for misdiagnosis. Enhanced physician awareness of the clinical features of VLS and thorough examination practices could mitigate these challenges.\u003c/p\u003e\u003cp\u003eRegarding characteristics of physician diagnosis, the majority of VLS diagnoses were made by gynecologists, followed by primary care physicians. Furthermore, none of our patients were diagnosed by dermatologists on routine exams. However, dermatologists were often consulted later in the diagnostic process, and the patients who did consult dermatology first were given an immediate accurate diagnosis. This suggests that increased dermatology involvement could improve early detection. In addition, this also highlights an opportunity for dermatologists to enhance their role in diagnosing and managing VLS and to consider incorporating genital examinations into practice to help reduce time to diagnosis and improve patient care.\u003c/p\u003e\u003cp\u003eInterestingly, patients who researched their symptoms online were significantly more likely to pursue medical care. This underscores the value of accessible and comprehensive online educational materials in empowering patients to advocate for their health and seek timely medical evaluations.\u003c/p\u003e\n\u003ch3\u003eLimitations\u003c/h3\u003e\n\u003cp\u003eLimitations of the study include lack of official provider diagnosis, as responses were self-reported by survey participants. Additionally, participants responding to the online survey may have been more likely to experience frustration with their diagnostic journey. Individuals who were diagnosed promptly may not have felt the need to engage in online forums or participate in the study. However, given that VLS is a relatively uncommon disease, an online survey was a useful approach to reach a sufficient number of respondents and gain meaningful insights into diagnostic delays.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eOverall, there are many complexities that contribute to delays in VLS diagnosis. As such, multi-faceted interventions are required to reduce diagnostic delay. Key recommendations include enhancing public and physician awareness of VLS symptoms, reducing stigma surrounding genital health concerns, increased dermatology involvement in VLS, and expanding online educational resources to empower patient self-advocacy. Future work can stratify data based on groupings, such as ethnicity, age, or nationality to see if diagnostic trends vary, or explore targeted strategies for early detection.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eVLS = Vulvar Lichen Sclerosus\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eThe authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.\u003c/p\u003e\u003cp\u003eTN, AV, KE, TM contributed to study conception and research design. TN, AV, EK participated in data collection and analysis. The manuscript was written by TN. TN, AV, EK, KE, TM contributed to review and editing of the manuscript. All authors read and approved the final manuscript.\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eTN, AV, KE, TM contributed to study conception and research design. TN, AV, EK participated in data collection and analysis. The manuscript was written by TN. TN, AV, EK, KE, TM contributed to review and editing of the manuscript. All authors read and approved the final manuscript.\u003c/p\u003e"},{"header":"References","content":"\u003col start=\"1\" type=\"1\"\u003e\n \u003cli\u003eKraus CN. Vulvar Lichen Sclerosus. \u003cem\u003eJAMA Dermatol\u003c/em\u003e. 2022;158(9):1088. doi:10.1001/jamadermatol.2022.0359\u003c/li\u003e\n \u003cli\u003eLee A, Fischer G. Diagnosis and Treatment of Vulvar Lichen Sclerosus: An Update for Dermatologists. \u003cem\u003eAm J Clin Dermatol\u003c/em\u003e. 2018;19(5):695-706. doi:10.1007/s40257-018-0364-7\u003c/li\u003e\n \u003cli\u003eWijaya M, Lee G, Fischer G. Quality of life of women with untreated vulval lichen sclerosus assessed with vulval quality of life index (VQLI). \u003cem\u003eAustralas J Dermatol\u003c/em\u003e. 2021;62(2):177-182. doi:10.1111/ajd.13530\u003c/li\u003e\n \u003cli\u003eCooper SM, Gao XH, Powell JJ, Wojnarowska F. Does treatment of vulvar lichen sclerosus influence its prognosis?. \u003cem\u003eArch Dermatol\u003c/em\u003e. 2004;140(6):702-706. doi:10.1001/archderm.140.6.702\u003c/li\u003e\n \u003cli\u003eStataCorp. \u003cem\u003eStata Statistical Software: Release 18\u003c/em\u003e. 2023. College Station, TX: StataCorp LLC.\u003c/li\u003e\n \u003cli\u003eHarris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. \u003cem\u003eJ Biomed Inform\u003c/em\u003e. 2009;42(2):377-381. doi:10.1016/j.jbi.2008.08.010\u003c/li\u003e\n \u003cli\u003eHarris PA, Taylor R, Minor BL, et al. The REDCap consortium: Building an international community of software platform partners. \u003cem\u003eJ Biomed Inform\u003c/em\u003e. 2019;95:103208. doi:10.1016/j.jbi.2019.103208\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":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":"vulvar lichen sclerosus","lastPublishedDoi":"10.21203/rs.3.rs-7359001/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7359001/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eVulvar lichen sclerosus (VLS) is a chronic inflammatory dermatosis of the genital area which causes pruritus, pain, and skin changes and which may progress to squamous cell carcinoma. Diagnosis occurs, on average, 4.6 years after symptom onset, impacting quality of life. This study explores factors contributing to diagnostic delay. An electronic survey was distributed via the r/lichensclerosus subreddit and the Lichen Sclerosus Support Group on Facebook. Adult, English-speaking patients with a reported physician's diagnosis of VLS were included. We received 82 eligible responses. All participants (100%) experienced symptoms before diagnosis, and 87.8% sought medical care. Many participants (67.9%) felt that time until their diagnosis was too long. Vulvar itching was the most common symptom (86.6%), and those with itching were 7.6 times more likely than those with other symptoms to seek care (p\u0026thinsp;=\u0026thinsp;0.04). Common reasons for delaying care included embarrassment (43.9%), believing symptoms were normal (43.9%), shame (24.6%), fear of physician visits (21.1%), and doubt in physicians' ability to diagnose/treat (21.1%).Vaginal candidiasis was the most frequently reported initial misdiagnosis (44.9%). Interestingly, women reporting pain with sex were 9.8 times more likely to be misdiagnosed compared to other symptoms. This study defines varied barriers to timely VLS diagnosis, suggesting the need for multi-faceted interventions to reduce delays.\u003c/p\u003e","manuscriptTitle":"Barriers to Timely Diagnosis of Vulvar Lichen Sclerosus: A Patient-Centered Analysis of Diagnostic Delays","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-10-16 08:46:45","doi":"10.21203/rs.3.rs-7359001/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":"4e998bcd-4cc5-43cd-b1fd-46537c413396","owner":[],"postedDate":"October 16th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-05-05T21:39:41+00:00","versionOfRecord":[],"versionCreatedAt":"2025-10-16 08:46:45","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7359001","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7359001","identity":"rs-7359001","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}