Prevalence of symptoms consistent with a diagnosis of vulvodynia: population-based estimates from 2 geographic regions
Open accessAbstract
Objective We used validated sensitive and specific questions associated with clinically confirmed diagnoses of unexplained vulvar pain (vulvodynia) to compare the cumulative incidence of vulvar pain and prevalence of care-seeking behavior in Boston metropolitan area (BMA) and in Minneapolis/Saint Paul metropolitan area (MSP) from 2001 through 2005 using census-based data, and 2010 through 2012, using outpatient community-clinic data, respectively.Study design We received self-administered questionnaires from 5440 women in BMA and 13,681 in MSP, 18-40 years of age, describing their history of vulvar burning or pain on contact that persisted >3 months that limited/prevented intercourse.Results By age 40 years, 7-8% in BMA and MSP reported vulvar pain consistent with vulvodynia. Women of Hispanic origin compared to whites were 1.4 times more likely to develop vulvar pain symptoms (95% confidence interval, 1.1-1.8). Many women in MSP (48%) and BMA (30%) never sought treatment, and >50% who sought care with known health care access received no diagnosis.Conclusion Using identical screening methods, we report high prevalence of vulvar pain in 2 geographic regions, and that access to health care does not increase the likelihood of seeking care for chronic vulvar pain.
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Claims the paper makes
0 of 13 cited sources checked · 0 supported · 0 flagged
- Findingown data
The association between Hispanic/Latina origin and increased vulvodynia risk was replicated in a second geographic location.
“We were the first to show this association1 and have now replicated this previous finding in a second geographical location.”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [1] Harlow, 2003, A population-based assessment of chronic unexplained vulvar pain: have we underestimated the prevalence of vulvodynia?, J Am Med Womens Assoc
Not checked in the free run.
- Findingown data
In BMA, more than 30% of women who sought treatment were unable to receive a diagnosis.
“even within the BMA sample, more than 30% were unable to receive a diagnosis”
Quote in the paperNot a substantial claim - Findingown data
The age-specific risk of vulvodynia was similar between BMA and MSP across age categories.
“the age-specific risk of vulvodynia in the BMA sample was similar to that in the MSP sample across each of the age categories.”
Quote in the paperSubstantial claim - Findingown data
By age 40, approximately 7-8% of women in the Boston and Minneapolis/St. Paul samples had experienced symptoms consistent with vulvodynia.
“By age 40, 7–8% in BMA and MSP reported vulvar pain consistent with Vulvodynia.”
- Also stated in: § RESULTS · hedged
“These results suggest that by age 40, 7–8% of women will have experienced symptoms consistent with vulvodynia.”
- Also stated in: § COMMENT · hedged
“approximately 8% of women may experience these symptoms by the age of 40.”
Quote in the paperSubstantial claim - Also stated in: § RESULTS · hedged
- Findingown data
The cumulative incidence of symptoms consistent with vulvodynia was similar in BMA and MSP, within approximately one percentage point.
“women in the MSP and BMA samples were within approximately one percentage point of each other, suggesting no appreciable difference in vulvodynia incidence between the two populations.”
- Also stated in: § COMMENT · plain
“we observed a similar cumulative incidence for symptoms consistent with vulvodynia across two geographical regions in which the source population differed.”
Quote in the paperSubstantial claim - Also stated in: § COMMENT · plain
- Findingown data
More than 50% of women who sought treatment reported being unable to receive a diagnosis, irrespective of timing of pain onset.
“more than 50% reported being unable to receive a diagnosis, irrespective of timing of pain onset.”
Quote in the paperNot a substantial claim - Findingown data
Among women who sought treatment, there was little difference in the number of clinicians seen by primary versus secondary onset.
“of those who sought treatment, there was little difference in the number of clinicians seen by primary versus secondary onset of pain”
Quote in the paperNot a substantial claim - Findingown data
Women of Hispanic/Latina origin were 1.4 times more likely than Caucasian women to develop vulvar pain symptoms by age 40, combined across both regions (95% CI 1.1-1.8).
“Women of Hispanic/Latina origin compared to Caucasians were 1.4 times more likely to develop vulvar pain symptoms (95%CI: 1.1–1.8).”
- Also stated in: § RESULTS · plain
“combined across both geographic regions, by age 40 Hispanic/Latina women were 1.4 times more likely to develop vulvar pain compared to Caucasian women (95% CI 1.1–1.8).”
- Also stated in: § COMMENT · plain
“the risk of developing this condition by the age of 40 is higher among Hispanic/Latina women than White women.”
Quote in the paperSubstantial claim - Also stated in: § RESULTS · plain
- Findingown data
Among women in MSP who sought care, more than 50% received no diagnosis.
“>50% who sought care with known health care access received no diagnosis.”
- Also stated in: § RESULTS · plain
“within the MSP sample, more than 50% received no diagnosis for their condition.”
Quote in the paperNot a substantial claim - Also stated in: § RESULTS · plain
- Findingown data
In BMA, women who sought treatment were more likely to see more than two clinicians than MSP women.
“those in the BMA sample were more likely to seek care from more than two clinicians compared to women in the MSP sample”
Quote in the paperNot a substantial claim - Findingown data
Among women with primary vulvodynia, the risk difference for seeking treatment compared to secondary onset was 8.1% (95% CI −0.6-16.8).
“women who always had pain on contact (primary Vulvodynia) were somewhat more likely to have sought treatment compared to women whose pain began after a period of pain-free intercourse (Risk Difference = 8.1%, 95%CI −0.6–16.8).”
Quote in the paperNot a substantial claim - Findingreasoning
In BMA, women who sought treatment were more likely to receive a diagnosis than MSP women.
“and thus were more often able to receive a diagnosis.”
Quote in the paperNot a substantial claim - Interpretationcitation
The substantial stigma associated with vulvar pain may explain why MSP women, despite having access to care, were less likely to seek treatment.
“This may emphasize the substantial stigma associated with vulvar pain given that these women choose to seek care for other medical problems,9 but apparently do not convey to their healthcare providers the presence of vulvar pain.”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [9] Nguyen, 2013, Perceived stereotyping and seeking care for chronic vulvar pain, Pain Med source
Not checked in the free run.
- Interpretationown data
Having access to health care does not increase the likelihood that women with chronic vulvar pain will seek care.
“access to health care does not increase the likelihood of seeking care for chronic vulvar pain.”
- Also stated in: § COMMENT · plain
“MSP women were even less likely to seek treatment for their vulvar pain symptoms compared to their BMA counterparts.”
Quote in the paperSubstantial claim - Also stated in: § COMMENT · plain
- Study design and conductown data
Respondents and non-respondents were comparable by age in both BMA and MSP samples.
“In both the BMA and the MSP sample, respondents and non-respondents were comparable by age (BMA: 41% of respondents and 41% of non-respondents were <30 years; MSP: 49% of respondents and 55% of non-respondents were <30 years).”
Quote in the paperNot a substantial claim - Study design and conductown data
The study used identical screening methods across BMA and MSP.
“Using identical screening methods, we report high prevalence of vulvar pain in two geographical regions”
- Also stated in: § Population-sampling frame, Minneapolis/St, Paul Metropolitan Area (MSP) · plain
“Women sampled were mailed a letter describing the study and a self-administered questionnaire to assess the same history of vulvar pain as that queried among women in the BMA.”
Quote in the paperSubstantial claim - Also stated in: § Population-sampling frame, Minneapolis/St, Paul Metropolitan Area (MSP) · plain
- Interpretationreasoning
Differences in time to define chronicity (3 vs 6 months) may not have a large impact on prevalence estimates.
“Both Reed and Arnold’s estimates are similar to our current estimate suggesting that differences in time to define chronicity in diagnostic criteria may not have a large impact on prevalence estimates.4,6”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites [4] Arnold, 2007, Assessment of vulvodynia symptoms in a sample of US women: a prevalence survey with a nested case control study, Am J Obstet Gynecol source
Not checked in the free run.
- cites [6] Reed, 2012, Prevalence and demographic characteristics of vulvodynia in a population-based sample, Am J Obstet Gynecol source
Not checked in the free run.
- Interpretationown data
The study's findings shed light on the stigma that prevents women from seeking care even when access is available.
“Our findings also shed light on the associated stigma that prevents women from seeking care even when access to health care resources is available.”
Quote in the paperSubstantial claim - Interpretationreasoning
Selective recall of vulvar pain symptoms and care seeking behavior cannot be ruled out as influencing prevalence estimates.
“We can also not rule out that our prevalence estimates could be influenced by selective recall of vulvar pain symptoms and care seeking behavior.”
Quote in the paperNot a substantial claim
- May combine two claims. 11
- The quote only partly states this claim. 1
- Classified as probably not a substantial claim. 7
May combine two claims.
Findingown dataThe rate of first onset of vulvar pain was greatest before age 25, decreased in the late 20s and early 30s, and rose again as women approached later reproductive years.
“the rate of first onset of vulvar pain was greatest before the age of 25, decreased during the late 20s and early 30s, and then rose again as women approached their later reproductive years.”
Quote in the paperNot a substantial claimMay combine two claims. The quote only partly states this claim.
Findingown dataThe risk difference for seeking treatment between BMA and MSP was 18% (95% CI 11.3-24.6), with BMA higher.
“This can be empirically quantified as a Risk Difference of 18% (95% CI= 11.3–24.6).”
Quote in the paperSubstantial claimMay combine two claims.
Findingown dataIn MSP, 48% of women with symptoms consistent with vulvodynia never sought treatment; in BMA, 30% never sought treatment.
“Many women in MSP (48%) and BMA (30%) never sought treatment”
- Also stated in: § RESULTS · plain
“there were still a substantial proportion of both samples of women who never sought treatment (48% in MSP, 30% in BMA).”
Quote in the paperSubstantial claim- Also stated in: § RESULTS · plain
May combine two claims.
PremisecitationThe self-administered screening questions for vulvar pain have high sensitivity (83%) and specificity (94-95%) compared with a clinical diagnosis of vulvodynia.
“we previously reported that women reporting pain on contact for a period of three months or longer that limited or prevented intercourse was associated with an 83% sensitivity and 94% specificity for meeting a true diagnosis of vulvodynia based on the gold standard of a clinical examination to rule out other known causes of vulvar pain.5”
- Also stated in: § COMMENT · plain
“we used a set of questions that were validated against the gold standard of a clinical examination consistent with an 83% sensitivity and 95% specificity.5”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [5] Harlow, 2009, Self-reported vulvar pain characteristics and their association with clinically confirmed vestibulodynia, J Womens Health source
Not checked in the free run.
- Also stated in: § COMMENT · plain
May combine two claims.
Study design and conductreasoningBecause there was no clinical examination, some women classified as having symptoms consistent with vulvodynia may not meet clinical diagnostic criteria, so estimates likely include some misclassification.
“Without an actual clinical examination, we cannot be sure that those classified as having symptoms consistent with vulvodynia would in fact meet the existing or future clinically-confirmed diagnostic criteria for this condition. Thus, our estimates of age-specific risk and cumulative incidence across two geographical regions will likely include some degree of misclassification.”
Quote in the paperNot a substantial claimMay combine two claims.
Study design and conductown dataIn the MSP sample, 15% of participants were non-White, allowing reasonable analytical comparisons to the BMA sample.
“However, in the MSP sample, 15% of the participants were non-White allowing for reasonable analytical comparisons to the BMA sample.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationVulvodynia is highly prevalent, with lifetime estimates of 10-28% among reproductive-aged women in the general population.
“vulvodynia (chronic vulvar pain in the absence of objective abnormalities such as infection or dermatoses), is highly prevalent with lifetime estimates ranging from 10–28% among reproductive-aged women in the general population.”
Quote in the paperNot a substantial claim0 of 4 sources checked- cites [1] Harlow, 2003, A population-based assessment of chronic unexplained vulvar pain: have we underestimated the prevalence of vulvodynia?, J Am Med Womens Assoc
Not checked in the free run.
- cites [2] Reed, 2008, Vulvodynia incidence and remission rates among adult women: a 2-year follow-up study, Obstet Gynecol source
Not checked in the free run.
- cites [3] Reed, 2004, Pain at the vulvar vestibule: a web-based survey, J Low Genit Tract Dis source
Not checked in the free run.
- cites [4] Arnold, 2007, Assessment of vulvodynia symptoms in a sample of US women: a prevalence survey with a nested case control study, Am J Obstet Gynecol source
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
InterpretationreasoningSelection bias cannot be ruled out as an explanation for the observed ethnic differences.
“we can also not rule out selection bias as a potential explanation for these differences (consistent in both geographical regions) if, in truth, there are differences by race among those with vulvar pain who do and do not agree to participate in the survey.”
Quote in the paperNot a substantial claimMay combine two claims.
Interpretationown dataClinic-based assessments do not accurately estimate prevalence because they include only women who seek treatment and receive a diagnosis, about half of those with the condition.
“clinic-based assessments do not accurately estimate prevalence because it includes only those women who choose to seek treatment and ultimately receive a diagnosis, which represents approximately half of those who truly have this condition in the general population as shown in these and our earlier findings.1”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [1] Harlow, 2003, A population-based assessment of chronic unexplained vulvar pain: have we underestimated the prevalence of vulvodynia?, J Am Med Womens Assoc
Not checked in the free run.
Classified as probably not a substantial claim.
Study design and conductown dataThe analyses of care-seeking behavior and diagnosis were adjusted for age, race, and length of time suffering from vulvar pain.
“Separate logistic models were used to determine the adjusted proportion of women who sought treatment, and whether or not a diagnosis was obtained, adjusted for the women’s age at the time of the survey, race, and the length of time they had suffered from vulvodynia-like symptoms.”
- Also stated in: § RESULTS · plain
“Table 3 restricts the samples to those reporting symptoms consistent with vulvodynia to assess healthcare seeking behavior after adjustment for age, race, and length of time suffering from vulvar pain.”
Quote in the paperSubstantial claim- Also stated in: § RESULTS · plain
May combine two claims.
Study design and conductown dataThere were no clinically meaningful differences between BMA and MSP samples in the proportion reporting difficulty and/or pain with first tampon use, suggesting comparability in early life exposures.
“There were no clinically meaningful differences in the proportion of women reporting difficulty and/or pain with first tampon use between the two samples suggesting comparability in early life exposures that may contribute to vulvar pain onset later in life.1”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [1] Harlow, 2003, A population-based assessment of chronic unexplained vulvar pain: have we underestimated the prevalence of vulvodynia?, J Am Med Womens Assoc
Not checked in the free run.
Classified as probably not a substantial claim. May combine two claims.
InterpretationreasoningAny misclassification would be non-differential across region, biasing estimates of regional difference toward the null.
“We suspect any misclassification would be non-differential across region, biasing our estimates of the difference between region toward the null, on average.”
Quote in the paperSubstantial claimMay combine two claims.
PremisecitationIn a previous BMA census-based sample, vulvodynia cumulative incidence decreased with increasing age, and nearly half of affected women did not seek treatment.
“the cumulative incidence decreased with increasing age, with nearly half of all women affected choosing not to seek treatment.1”
Quote in the paperSubstantial claim0 of 1 sources checked- cites [1] Harlow, 2003, A population-based assessment of chronic unexplained vulvar pain: have we underestimated the prevalence of vulvodynia?, J Am Med Womens Assoc
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductown dataIn MSP, 13,681 women (53.1%) returned a completed questionnaire after three mailings.
“After three mailings, 13,681 women (53.1%) returned a completed questionnaire that included all key questions needed for this analysis.”
Quote in the paperNot a substantial claimMay combine two claims.
Premiseown dataIn a previous BMA sample, all ethnicities were affected, with somewhat greater occurrence among Hispanic/Latina women.
“All ethnicities we sampled were affected, with a somewhat greater occurrence among Hispanic/Latina women.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites [1] Harlow, 2003, A population-based assessment of chronic unexplained vulvar pain: have we underestimated the prevalence of vulvodynia?, J Am Med Womens Assoc
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
InterpretationreasoningPrevalence estimates may be over-inflated because women with a history of vulvar pain may have been more likely to agree to complete the screener.
“we can also not rule out that our prevalence estimates may be potentially over-inflated, since women with a history of vulvar pain may have been more likely to agree to complete our screener interview.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductown dataIn BMA, 67.2% completed the questionnaire after two mailings and one telephone follow-up.
“after two mailings and one telephone follow-up assessment, 67.2% completed the questionnaire.”
Quote in the paperNot a substantial claim
The paper relies on this without support.
The BMA and MSP samples are representative of women aged 18–40 in their respective geographic regions.
“we were able to assess the magnitude of this problem in women from community-based samples rather than clinical specialty practices.”
The paper relies on this without support.
Women accurately reported their age at first onset of vulvar pain.
“Self-reported age at first onset of vulvar pain was obtained and used to estimate age-specific cumulative incidence”
The paper relies on this without support.
Women accurately reported their care-seeking behavior and whether they received a diagnosis.
“We estimated what proportion of women sought treatment, how many different clinicians were seen to address their vulvar pain, and whether they were able to receive a diagnosis (either correct or incorrect based on the respondent’s self-report).”
The paper relies on this without support.
Non-respondents are similar to respondents on characteristics other than age that are relevant to vulvar pain.
“In both the BMA and the MSP sample, respondents and non-respondents were comparable by age”
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Approximately 40% of women with vulvodynia refrain altogether from seeking help.
“Approximately 40 % of women with vulvodynia refrain altogether from seeking help, in many cases because of stigma associated with the conditions [7, 19, 20]”
From A feasibility trial of online Acceptance and Commitment Therapy for women with provoked vestibulodynia (2023) · cites this paper as [7]
The Results (page unavailable) report that 48% of women with symptoms consistent with vulvodynia in the MSP sample and 30% in the BMA sample never sought treatment, broadly supporting the approximate 40% figure. The Comment (page unavailable) suggests stigma as a possible explanation but says reasons for not seeking care may be multifactorial; it does not establish that stigma explains many cases. (LLM, conf=0.86)
Experimental — accuracy not yet measured
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
Each contradiction between two passages listed here was confirmed by an independent check.
Conflicting specificity for the screening questions
MinorThe methods report 94% specificity for the screening questions, while the discussion reports 95% specificity for questions validated against a clinical examination.
“associated with an 83% sensitivity and 94% specificity for meeting a true diagnosis of vulvodynia”
“consistent with an 83% sensitivity and 95% specificity.5”
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- Authors
- Harlow, B. L., Kunitz, C. G., Nguyen, R. H. N., Rydell, S. A., Turner, R. M., & MacLehose, R. F.
- Affiliations
- University of Minnesota (US)
- Venue
- American Journal of Obstetrics and Gynecology
- Publisher
- Elsevier BV
- Published
- 2014-01
- Volume
- 210
- Issue
- 1
- Pages
- 40.e1-40.e8
- ISSN
- 0002-9378 (ISSN-L)
- PMC
- PMC3885163
- OpenAlex
- W2023517643
- Cited by
- 322
- References
- 16
- Citations by year
- 2026: 19 · 2025: 30 · 2024: 22 · 2023: 24 · 2022: 24 · 2021: 27 · 2020: 30 · 2019: 29 · 2018: 28 · 2017: 33 · 2016: 25 · 2015: 23 · 2014: 7 · 2013: 1
- FWCI
- 13.23
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- American Journal of Obstetrics and Gynecology (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health (R01-HD384285, R01-HD058608)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Sexual function and dysfunction studies
- Health Sciences › Medicine › Surgery › Genital Health and Disease
- Health Sciences › Medicine › Rheumatology › Pelvic floor disorders treatments
- Keywords
- vulvodynia, vulvar pain, prevalence, care-seeking behavior, health care access, Hispanic women, chronic vulvar pain, women's health, Boston metropolitan area
- MeSH terms
- Adolescent, Adult, Ethnicity, Female, Health Services Accessibility, Humans, Surveys and Questionnaires, United States, Incidence, Prevalence, Young Adult, Vulvodynia
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