Care Seeking for Chronic Vulvar Pain Among a Large,Population-Based Sample of Reproductive-Aged Women

Abstract

Background:

Chronic vulvar pain is a prevalent but often misdiagnosed and undertreated condition that adversely impacts quality of life. A large proportion of women report not seeking care for chronic vulvar pain, but little is known about the factors that underlie care-seeking decisions.

Materials and Methods:

We used a large, population-based survey of women aged 18–40 years to assess a history of chronic vulvar burning, pain on contact, or itching that had lasted ≥3 months. The survey also captured demographic characteristics and comorbidities. Women were asked if they had ever sought care for their chronic vulvar condition. Demographic characteristics and comorbidities were evaluated across pain categories and by care-seeking behaviors.

Results:

A higher proportion of women who described their pain as burning only and both burning and pain on contact had sought care for their pain (69.2% and 85.2%, respectively) compared with pain on contact only (41.8%). Women who described their pain as pain on contact only were also less likely to see multiple providers and to have ever received treatment for their pain. Care seekers were more likely to be married, have a college education, have a normal body mass index, and have multiple gynecologic comorbidities.

Conclusions:

Our study suggests that care-seeking behavior varies by pain type. Less than half of women who characterized their pain as pain on contact had sought medical care. Those who did seek care reported seeing fewer providers than those who experienced burning. Providers may wish to proactively ask patients about pain on contact.

Introduction

Chronic genital pain in women is poorly understood, and often misdiagnosed or untreated.^1,2 It is frequently clinically conceptualized in terms of its adverse effects on intercourse, as opposed to a pain disorder with implications beyond a sexual context.¹ Nonetheless, evidence from studies evaluating vulvodynia (provoked or generalized vulvar pain of unclear causes) suggests that chronic genital pain has serious adverse effects on quality of life for women beyond sexual function, including reduced psychological well-being.^3,4 Women with vulvodynia also report feelings of shame, worthlessness, and low self-esteem.⁵

Prevalence estimates for different types of chronic genital pain vary.⁶ A study using nationally representative data from 1992 suggested that 7% of American women were currently experiencing pain with intercourse, and this was more prevalent among young women.⁷ More recent population-based prevalence estimates for vulvodynia suggest a prevalence of 7%–8%^8,9 and a lifetime prevalence of up to 16%.²

A clear clinical picture of chronic genital pain is made more challenging by the large proportion of women who have not sought care for it. In population-based samples of women with vulvodynia-like symptoms, 40%–50% had never consulted a doctor about their symptoms.^2,8 In a survey of Swedish women, only 28% of women with painful sex lasting >6 months reported consulting a doctor about their pain.¹⁰ Women with chronic genital pain report barriers to seeking care from medical professionals, including feeling dismissed by providers, lack of confidence in a solution, fear that a physician will say that the pain will never resolve, and fear of stigma.¹¹ Women with other types of sexual dysfunctions also report not seeking care due to embarrassment or beliefs that the issue was temporary or normal.^12,13 Patient characteristics such as age and marital status vary across those who do and do not seek care for sexual dysfunctions, suggesting that there may be factors influencing care seeking beyond fears and beliefs.^13,14

Understanding correlates of care seeking for chronic vulvar pain can increase clinicians' ability to provide better support. Our aim was to use data from a self-administered questionnaire sent to a population of women of reproductive age (18–40 years) in the administrative database of a large health care provider. The goal was to provide current prevalence estimates for chronic vulvar pain symptoms, defined as vulvar pain characterized as either “burning” or “pain on contact” that lasted for >3 months. We also evaluated correlates of vulvar pain care-seeking behavior for those who reported having experienced chronic vulvar pain.

Materials and Methods

Study sample and design

The University of Minnesota Institutional Review Board approved this study, and questionnaire completion implied consent. We used data from a self-administered screener survey questionnaire sent to 66,857 women 18–40 years old seen for any medical reason in 1 of 40 outpatient clinics at a large health care network in the Minneapolis/St. Paul metropolitan area between March 2008 and July 2011. This survey was designed to screen women for recruitment into a population-based case–control study of vulvodynia, and a previous study used data from this screener to estimate the population prevalence of vulvodynia.⁸

The questionnaire asked about women's lifetime history of vulvar pain symptoms; 30,676 women (43%) returned a completed survey. The responders were reflective of the sampling frame, except that they were slightly older than nonresponders (51% of respondents and 45% of nonrespondents were >30 years) and less likely to live in higher poverty areas (9.5% of respondents lived in census block areas associated with higher poverty compared with 10.0% of nonrespondents).¹⁵ We excluded 5 women who had not yet reported the start of menstruation, 1,391 women who reported only itching with no pain or burning (due to that fact that itching alone likely represents conditions not necessarily related to chronic vulvar pain, and care seeking for itching alone may be different than for pain), and 181 women missing data on both a history of burning and pain on contact.

Questionnaire structure

All women were asked to report demographic characteristics, details about menstruation and vulvar hygiene practices, use of contraception, and the presence of health conditions. Women were also asked to report whether they had ever experienced three different chronic vulvar pain or discomfort conditions. Women could respond affirmatively to multiple vulvar conditions. If women reported ever experiencing a vulvar condition, they were asked whether they had ever seen a health care provider for the discomfort, how many providers they had seen, whether they had ever received treatment, and whether they had experienced this condition within the last 6 months. If women reported that they had experienced the condition within the last 6 months, they were then asked more detailed questions about the nature of the discomfort. Women who responded affirmatively to multiple vulvar conditions answered these questions separately for each type of vulvar condition.

Categorization of vulvar pain and care seeking

Experiences with vulvar pain or discomfort were assessed using three questions: (1) “Did you ever experience itching on your vulva that persisted for 3 months or longer?” (2) “Did you ever experience burning in your vulvar area that persisted for 3 months or longer?” and (3) “Did you ever experience excessive vulvar pain on contact or touching that persisted for 3 months or longer?” A note was provided below these three questions, which stated as follows: “The vulva = the entire external genital (private) area outside the vaginal opening.”

For comparisons of women's characteristics and comorbidities across vulvar pain and discomfort categories, women were categorized into three groups based on their responses to vulvar condition questions: (1) no pain or burning, (2) burning and/or pain on contact with no itching, and (3) burning and/or pain on contact with itching. Women with pain and itching were treated as a separate category because itching may be indicative of an ongoing, chronic infection that underlies the chronic pain, and therefore may have different correlates.

For evaluation of health care-seeking behaviors by pain type, women in the second subgroup above (those with burning and/or pain on contact but no itching) were divided into three further subcategories: (1) burning only, (2) pain on contact only, and (3) burning and pain on contact. Women with concomitant itching were excluded from these analyses for the primary analysis because patterns of care seeking for itching may differ from patterns of care seeking for pain alone. Within each of these categories, women were categorized as care seeking if they reported that they ever saw a health care practitioner about their discomfort. Women reporting both burning and pain on contact were categorized as care seeking if they reported seeing a health care provider for either their burning or pain on contact. As a sensitivity analysis, we repeated this assessment with the inclusion of women who reported experiencing itching as well as burning and/or pain.

Covariates

Covariates were compared across pain categories and by care-seeking status. Demographic characteristics assessed included age, race, ethnicity, marital status, body mass index (BMI), and education level. Other characteristics included reporting difficulty the first few times using a tampon, typical amount of pain with menstrual periods, and how often a participant thought she had had a urinary tract infection (UTI) or genital tract infection, but had a negative result. Comorbid conditions were divided into nongynecologic and gynecologic conditions. For each condition, women could respond “No,” “Yes, diagnosed by a healthcare professional,” or “Yes, but not diagnosed by a healthcare professional.” A variable for the number of total chronic comorbidities was assessed by summing the total number of diagnosed and suspected comorbidities reported (chronic comorbidities were anxiety, chronic fatigue syndrome, depression, irritable bowel syndrome, migraines, psoriasis or eczema, and temporomandibular joint disorder). Similarly, a variable for the total number of vaginal/pelvic comorbidities was calculated by summing the total number of diagnosed or suspected vaginal/pelvic comorbidities reported (bacterial vaginosis, chlamydia, chronic vaginal discharge, genital warts/HPV/abnormal pap smear, multiple yeast infections, urinary tract infection, vulvar pain/vulvodynia, endometriosis, and polycystic ovaries).

Women who reported experiencing any type of pain were also asked, “Have you ever used a lubricant to lessen discomfort during intercourse?” Those who responded affirmatively reported whether it helped.

Analysis

We compared baseline characteristics, gynecologic and nongynecologic conditions across the following vulvar pain and discomfort categories: (1) no pain on contact or burning, (2) pain on contact and/or burning with no itching, and (3) pain on contact and/or burning with itching. We compared components of health care-seeking behavior, including whether women ever sought care, how many providers they reported seeing, and whether they ever received treatment across women reporting (1) burning only, (2) pain on contact only, and (3) pain on contact and burning using log-binomial models to calculate prevalence ratios (PRs) and 95% confidence intervals (CIs). We also calculated PRs for ever receiving treatment adjusted for number of providers seen. We also calculated PRs for women reporting having used lubricant to lessen discomfort during intercourse by pain category.

To assess predictors of care seeking, we collapsed pain categories, such that we were comparing care seekers with noncare seekers regardless of pain type. We calculated unadjusted PRs and 95% CI for each covariate independently, and fully adjusted models simultaneously adjusting for all evaluated covariates, again using log-binomial models. As a sensitivity analysis, we assessed predictors of care seeking for each pain category (burning only, pain on contact only, and pain on contact and burning) separately to see if patterns emerged across pain types.

Results

Our final sample included 29,099 women. Of these, 25,242 reported no experiences of vulvar burning, pain on contact, or itching lasting ≥3 months, while 2,472 (8.5%) reported experiencing vulvar pain on contact and/or burning with no itching lasting ≥3 months, and 1,385 reported experiencing vulvar pain on contact and/or burning and itching lasting ≥3 months (4.8%). Among those who reported any chronic vulvar pain, the prevalence of burning only was 12.9%, the prevalence of pain on contact only was 68.9%, and the prevalence of both pain on contact and burning was 18.2%.

Overall, the sample was primarily White (Table 1). Approximately half of the women had a bachelor's degree or more. Baseline characteristics were generally consistent across vulvar pain and discomfort categories, except that women who reported any type of chronic vulvar pain were more likely to report more painful periods than women without pain. The prevalence of difficulty with first few tampon uses differed by pain category. Forty-one percent of those with no pain on contact or burning reported at least some pain with first few tampon uses, compared with 60.7% of those with pain on contact or burning with no itching and 61.2% of those with pain on contact or burning and itching. In addition, far more women who reported pain on contact or burning with or without itching had the experience of thinking they had a urinary tract infection but the test was negative (29.3% of women without pain on contact or burning reported having had this experience, compared with 50.1% of those with pain on contact and/or burning with no itching and 60.5% of those with pain on contact and/or burning and itching). Less than 5% of the population used douching products regularly.

Table 1.

Characteristics of the Sample by Pain Category

	No pain or burning (n = 25,242)	Burning and/or pain with no itching (n = 2,472)	Burning and/or pain with itching (n = 1,385)
	n (%)	n (%)	n (%)
Age (years)
≤20	1,559 (6.2)	137 (5.5)	78 (5.6)
21–25	4,085 (16.2)	526 (21.3)	224 (16.2)
26–30	6,550 (26.0)	727 (29.4)	363 (26.3)
31–35	7,044 (27.9)	642 (26.0)	401 (29.0)
36–41	5,990 (23.7)	439 (17.8)	317 (22.9)
Missing	13	1	2
Hispanic or Latina
Yes	899 (3.6)	93 (3.8)	77 (5.6)
No	24,225 (96.4)	2,364 (96.2)	1,302 (94.4)
Missing	117	15	6
Race
White	21,895 (87.2)	2,185 (88.8)	1,186 (86.6)
Black	806 (3.2)	78 (3.2)	59 (4.3)
Asian/Hawaiian	1,324 (5.3)	57 (2.3)	30 (2.2)
Native American/Alaska Native/other/multiracial	1,078 (4.3)	141 (5.7)	95 (6.9)
Missing	138	11	15
Body mass index
<18.5	677 (2.7)	81 (3.3)	34 (2.5)
18.5–24.9	13,523 (54.3)	1,325 (54.3)	638 (46.9)
25–29.9	5,930 (23.8)	556 (22.8)	350 (25.7)
30–34.9	2,691 (10.8)	256 (10.5)	167 (12.3)
35+	2,080 (8.4)	221 (9.1)	171 (12.6)
Missing	340	33	25
Education
High school or equivalent or below	2,569 (10.2)	287 (11.6)	179 (12.9)
Some college or associate's degree	8,640 (34.3)	913 (37.0)	528 (38.1)
Bachelor's degree or more	13,978 (55.5)	1,266 (51.3)	678 (49.0)
Missing	54	6	0
Difficulty experienced the first few times tried to insert a tampon
No difficulty	7,582 (30.1)	475 (19.3)	270 (19.6)
Difficulty but not pain	7,151 (28.4)	492 (20.0)	265 (19.2)
Difficulty and some or great pain	9,133 (36.3)	1,419 (57.7)	797 (57.8)
Never tried to use a tampon	1,287 (5.1)	73 (3.0)	47 (3.4)
Missing	89	13	6
Typical amount of menstrual pain with menstrual periods
No pain, or mild cramps with medication seldom needed	13,415 (53.3)	1,028 (41.6)	545 (39.4)
Moderate cramps with medication usually needed	9,478 (37.7)	1,027 (41.6)	583 (42.2)
Severe cramps with medication and bed rest required	2,285 (9.1)	415 (16.8)	254 (18.4)
Missing	64	2	3
How often have you thought you had a UTI or genital tract infection, but test was negative
Never/not applicable	17,756 (70.7)	1,230 (49.9)	544 (39.5)
Hardly ever	4,772 (19.0)	595 (24.2)	286 (20.8)
Sometimes or a lot	2,599 (10.3)	638 (25.9)	546 (39.7)
Missing	114	9	9

UTI, urinary tract infection.

The vast majority of women (∼90%) who reported experiencing pain on contact or burning reported that it occurred intermittently, as opposed to being present all the time. Lubricant use to lessen discomfort during intercourse varied according to pain type and care seeking; among women with pain on contact only, 81.7% of women who sought care reported lubricant use, compared with 70.8% of women who did not seek care (PR = 1.2 [95% CI: 1.0–1.3], comparing the prevalence of lubricant use among care seekers with that of noncare seekers). For those with burning only, 55.9% of those who sought care reported lubricant use compared with 37.5% of women who did not seek care (PR = 1.5, 95% CI: 0.6–3.7). For those with burning and pain on contact, 81.9% of women who sought care reported lubricant use, compared with 72.2% of those who did not seek care (PR = 1.1, 95% CI: 0.6–2.1). The majority of women who reported lubricant use reported that it was helpful, regardless of pain type: ∼85% of those with burning, ∼80% of those with pain on contact, and ∼70% of those with burning and pain on contact reported that lubricant helped lessen pain with intercourse.

Patterns of care-seeking behaviors are presented across vulvar pain and discomfort categories in Table 2. Women reporting only pain on contact were less likely to report seeking care than those with burning only or pain on contact and burning (41.8% vs. 69.2% and 85.2%, respectively). The PRs compared with burning only were 0.6 (95% CI: 0.5–0.7) for pain on contact only and 1.2 (95% CI: 1.1–1.4) for pain on contact and burning.

Table 2.

Health-Seeking Behavior Among Those Who Reported Any History of Burning, Pain on Contact, or Both for ≥3 Months, Excluding Those Reporting Itching

	Burning only (n = 99)	Pain on contact only (n = 2,236)	Burning and pain on contact (n = 143)
Ever sought care for chronic vulvar pain	n (%)	n (%)	n (%)
Yes	63 (69.2)	912 (41.8)	121 (85.2)
No	28 (30.8)	1,270 (58.2)	21 (14.8)
Missing	8	54	1
PR^a (95% CI) comparing the prevalence of care seeking across the three pain categories	Ref.	0.6 (0.5–0.7)	1.2 (1.1–1.4)
How many providers did you see^b
1	23 (38.3)	463 (53.2)	26 (22.6)
2	10 (16.7)	214 (24.6)	29 (25.2)
3	13 (21.7)	83 (9.5)	18 (15.7)
4	2 (3.3)	37 (4.3)	10 (8.7)
5+	12 (20.0)	74 (8.5)	31 (27.0)
Missing	3	41	6
PR^a (95% CI) comparing the prevalence of seeing ≥1 provider across pain categories	Ref.	0.8 (0.6–0.9)	1.3 (1.0–1.6)
Ever received treatment for chronic vulvar pain^b
No	16 (26.2)	458 (50.3)	30 (27.3)
Yes	45 (73.8)	453 (49.7)	88 (72.7)
Missing	2	1	0
PR^a (95% CI) comparing the prevalence of receiving treatment across pain categories	Ref.	0.4 (0.3–0.5)	1.2 (0.9–1.5)
PR^a (95% CI) comparing the prevalence of receiving treatment across pain categories adjusted for number of providers seen	Ref.	0.7 (0.5–1.0)	0.9 (0.7–1.4)

PRs compare the prevalence of health-seeking behaviors across categories of vulvar pain, with “burning only” serving as the reference group. A PR of >1 indicates a higher prevalence of the behavior among the comparator vulvar pain group, while a PR of <1 indicates a lower prevalence of the behavior among the comparator vulvar pain group, compared with “burning only.”

Only reported for those who ever sought care for chronic vulvar pain.

CI, confidence interval; PR, prevalence ratio.

Among those who reported seeking care, >60% of those with burning only and ∼80% of those with burning and pain on contact reported seeing >1 provider. On the contrary, 46.8% of women with only pain on contact reported seeing >1 provider. PRs for seeing more than one provider were 0.8 (95% CI: 0.6–0.9), comparing those with pain on contact only versus those with burning only and 1.3 (95% CI: 1.0–1.6) comparing those with pain on contact and burning to those with burning only. Those who reported burning only or burning and pain on contact were more likely to report ever receiving treatment than women who reported pain on contact only (PR 0.4 [95% CI: 0.3–0.5] comparing those with pain on contact only to burning only and 1.2 (95% CI: 0.9–1.5) comparing those with both pain on contact and burning to burning only. The strength of association was attenuated after adjustment for the number of providers seen (adjusted PR = 0.7 [95% CI: 0.5–1.0] for pain on contact only and 0.9 [95% CI: 0.7–1.4] for both burning and pain on contact, compared with burning only).

Predictors of care seeking are displayed in Table 3. Married women were more likely than single women to report care seeking after adjustment for other predictors (adjusted PR = 1.1, 95% CI: 1.0–1.3). Women with lower education were less likely to report care seeking (adjusted PRs for high school or below = 0.8 [95% CI: 0.7–1.0] and some college = 0.9 [95% CI: 0.8–1.0], respectively, compared with women with at least a bachelor's degree). Women with a BMI >35 were less likely to report care seeking than women with lower BMI (adjusted PR 0.8 [95% CI: 0.7–0.9], compared with women with a BMI of 18.5–24.9). The number of vaginal/pelvic comorbidities was positively associated with care seeking, but the number of chronic, nongynecologic comorbidities was not.

Table 3.

Predictors of Care Seeking Among Women Who Reported Any History of Burning, Pain on Contact, or Both, for ≥3 Months

	Care seeking
	Yes (n = 1,107)	No (n = 1,333)	Unadjusted PRs ^a (95% CI)	Fully adjusted PRs ^a,b (95% CI)
Age (years)	n (%)	n (%)
≤20	33 (3.0)	100 (7.5)	0.6 (0.4–08)	0.7 (0.5–1.0)
21–25	220 (19.9)	298 (22.4)	Ref	Ref
26–30	317 (28.7)	399 (29.9)	1.0 (0.9–1.2)	0.9 (0.8–1.1)
31–35	314 (28.4)	324 (24.3)	1.2 (1.0–1.3)	1.0 (0.9–1.2)
36–41	222 (20.1)	212 (15.9)	1.2 (1.1–1.4)	1.0 (0.9–1.2)
Missing	1	0
Hispanic or Latina
Yes	34 (3.1)	57 (4.3)	0.8 (0.6–1.1)	1.0 (0.8–1.3)
No	1,066 (96.9)	1,268 (95.7)	Ref	Ref
Missing	7	8
Race
White	1,006 (91.1)	1,162 (87.6)	Ref	Ref
Black	28 (2.5)	44 (3.3)	0.8 (0.6–1.1)	1 (0.7–1.3)
Asian/Hawaiian	21 (1.9)	33 (2.5)	0.8 (0.6–1.2)	0.8 (0.6–1.1)
Native American/Alaska Native/other/multiracial	49 (4.4)	87 (6.6)	0.8 (0.6–1.0)	0.8 (0.7–1.1)
Missing	3	7
Marital status
Single, never married	386 (35)	575 (43.2)	Ref	Ref
Married or partnered	636 (57.6)	678 (51)	1.2 (1.1–1.3)	1.1 (1–1.3)
Separated/divorced/widowed	82 (7.4)	77 (5.8)	1.3 (1.1–1.5)	1.2 (1–1.4)
Missing	3	3
Body mass index
<18.5	42 (3.9)	40 (3)	1.1 (0.9–1.4)	1.1 (0.9–1.3)
18.5–24.9	603 (55.2)	707 (53.7)	Ref	Ref
25–29.9	256 (23.4)	291 (22.1)	1.0 (0.9–1.1)	1 (0.9–1.1)
30–34.9	109 (10)	142 (10.8)	0.9 (0.8–1.1)	0.9 (0.8–1.1)
35+	82 (7.5)	137 (10.4)	0.8 (0.7–1.0)	0.8 (0.7–0.9)
Missing	15	16
Education
High school or equivalent or below	104 (9.4)	174 (13.1)	0.8 (0.7–0.9)	0.8 (0.7–1)
Some college or associate's degree	387 (35)	506 (38.1)	0.9 (0.8–1.0)	0.9 (0.8–1)
Bachelor's degree or more	615 (55.6)	648 (48.8)	Ref	Ref
Missing	1	5
Depression
Yes, diagnosed	466 (42.4)	523 (39.5)	1.0 (0.9–1.1)	1 (0.9–1.1)
Yes, not diagnosed	111 (10.1)	192 (14.5)	0.8 (0.7–0.9)	0.8 (0.7–1.0)
No	522 (47.5)	609 (46)	Ref	Ref
Missing	1	9
Number of chronic comorbidities^c
0	189 (17.1)	237 (17.8)	Ref	Ref
1	229 (20.7)	268 (20.1)	1.0 (0.9–1.2)	1 (0.9–1.1)
2	238 (21.5)	343 (25.7)	0.9 (0.8–1.1)	1 (0.9–1.2)
3+	451 (40.7)	485 (36.4)	1.1 (1.0–1.2)	0.9 (0.8–1)
Number of vaginal/pelvic comorbidities^d
0	120 (10.8)	260 (19.5)	Ref	Ref
1	257 (23.2)	391 (29.3)	1.3 (1.1–1.5)	1 (0.9–1.2)
2	314 (28.4)	321 (24.1)	1.6 (1.3–1.9)	1.3 (1.1–1.5)
3+	416 (37.6)	361 (27.1)	1.7 (1.4–2.0)	1.5 (1.3–1.8)

PRs compare the prevalence of care seekers versus noncare seekers across each level of characteristics. A PR >1 indicates a higher prevalence of care seekers compared with the reference level, while a PR <1 indicates a lower prevalence of care seekers compared with the reference level.

Adjusted for all other covariates in the table.

Both diagnosed and suspected but not diagnosed comorbidities contributed to this tally. Chronic conditions were anxiety, chronic fatigue syndrome, depression, irritable bowel syndrome, migraines, psoriasis or eczema, and temporomandibular joint disorder.

Both diagnosed and suspected but not diagnosed comorbidities contributed to this tally. Vaginal/pelvic comorbidities were bacterial vaginosis, chlamydia, chronic vaginal discharge, genital warts/HPV/abnormal pap smear, multiple yeast infections, urinary tract infection, vulvar pain/vulvodynia, endometriosis, and polycystic ovaries.

Predictors of care-seeking behavior were similar when comparisons were repeated in the sample, including women who reported itching as well as pain on contact and/or burning (data not shown). There were also no clear differences in predictors of care seeking across the three pain types, and predictors appeared consistent, though the sample sizes in the burning only and burning and pain on contact groups were small, limiting the precision of estimates (Supplementary Table S1).

Discussion

In this large, population-based sample, >1 in 10 women had ever experienced vulvar pain on contact or burning, with or without itching, lasting ≥3 months. We found that care seeking varied by how women described their pain, with reporting pain on contact only less likely to seek care than those who described their pain as burning (with or without concomitant pain on contact). Women reporting pain on contact only were also less likely to report receiving treatment, even when controlling for number of providers seen. Women who reported seeking care often saw many providers. Care-seeking behavior varied across demographic characteristics.

Our results are generally consistent with other studies about care seeking for sexual health problems. One study of women with hypoactive sexual desire disorder reported that women who sought health care were older, married, and more likely to have a college education.¹³ Our study did not find age differences in care-seeking behavior after adjustment for other predictors, but we did find that being married and having a bachelor's degree were positively associated with care seeking. Maserejian et al. also reported racial differences in care-seeking behavior,¹³ which our study did not find perhaps due to the limited number of non-White women in the sample. There are many reasons why care-seeking behavior may differ across racial groups, including the effects of systemic racism¹⁶ and experiences of discrimination from health care providers,¹⁷ which may be compounded in the already underserved area of women's sexual health.¹⁸ Future research into chronic vulvar pain should strive to recruit more racially diverse samples.

Another study of care seeking among women with any sexual problem with accompanying distress reported slightly different findings than ours.¹⁴ Women who sought formal care were more likely to be married and have a college education, but care seekers were younger than noncare seekers. They also reported that care seeking seemed to be highly correlated with sexual distress scores, which we were not able to capture. They did not see differences in depression prevalence across care-seeking categories but did report that women with four or more chronic conditions were more likely to seek care. We similarly did not see differences in ever having been diagnosed with depression by care-seeking status but did not see meaningful differences in the prevalence of multiple nongynecologic comorbidities. We did, however, find that the prevalence of care seeking increased with the number of vaginal/pelvic comorbidities. These findings, coupled with ours, suggest that care seeking may vary by type of sexual dysfunction and pain, and future research into barriers to care seeking should evaluate conditions independently to provide better insights.

Our study indicates an important gap in receiving health care for many women experiencing chronic vulvar pain. Physicians report barriers to initiating discussions about sexual problems with women, including lack of established treatments for sexual dysfunctions, limited time with patients, and lack of experience.¹⁹ Patients similarly report barriers to discussion of sexual problems with providers, including embarrassment, fear of stigma, and lack of confidence in a solution.¹¹

The prevalence of pain and discomfort, and the high number of women who do not share their pain with health care providers, should be an alarm bell that women need more support from providers. Providers should consider taking a detailed, culturally competent sexual history from all patients, which includes specifically asking about pain.²⁰ Our study supports previous findings that women with chronic vulvar pain report pain with first tampon use.^2,8 Querying younger menstruating patients about their menstrual hygiene practices, including the reason for not using tampons or any discomfort with tampons, may be an opportunity to initiate early discussions about vulvar pain.

Our findings suggest new interesting areas of study. Women in the highest BMI category were less likely to report care seeking for vulvar pain but were no less likely to report experiencing pain. This may be due to feelings of stigma experienced by overweight women in health care settings,²¹ and may indicate a need for providers to be cognizant of the sexual health needs of all patients. We also found clinically meaningful differences in the proportion of women who had three or more gynecologic/pelvic issues by care-seeking status, but no differences in the proportion of women with three or more nongynecologic chronic health conditions. This may suggest that higher levels of engagement with the health care system in general may not influence care seeking for vulvar pain conditions, but high engagement with gynecologic/pelvic care specifically may. Alternatively, it could indicate that women are more likely to seek care for vulvar pain if they believe there is an underlying gynecologic problem.

Our study should be interpreted in the context of important limitations. Because of the cross-sectional nature of our data, we are only able to report descriptive associations and cannot make any causal inferences about observed relationships. We also do not know which type of provider care-seeking women saw, which is important information because evidence suggests that providers' confidence in addressing women's sexual health issues varies by specialty.¹⁹ Future research would benefit from asking what types of providers women are seeing for their sexual health issues.

We captured limited details about women's pain conditions, and therefore there is likely considerable heterogeneity in terms of which clinical conditions are being captured in each of our pain categorizations (i.e., burning, pain on contact). We also divided women into categories of burning pain versus pain on contact based on their responses to survey questions; however, it is possible that some women with burning may report it as pain on contact if it only occurs when provoked. The clinical relevance of our pain categorization may be limited by how women interpreted the questions. Women who reported itching as well as chronic vulvar pain likely represent women with diagnosable and potentially treatable gynecologic conditions. For this reason, we excluded women who reported itching as well as pain in our primary analysis of care-seeking behaviors. However, the sensitivity analysis that included those with itching suggested similar care-seeking patterns for those with and without itching alongside their vulvar pain, which suggests that the presence of itching may not change how women seek support for their vulvar pain.

Our sample was also restricted to women 18–40 years old in an attempt to reduce the possibility of capturing premenarchial or menopause-related vulvar pain. Thus, we cannot comment on chronic vulvar pain occurring in younger or older women. In addition, our sample was drawn from the administrative records of a health care provider. Although we do not have information on whether women had health insurance, it is likely that many of them did, and certainly have at least some access to health care. It is possible, therefore, that our findings overestimate the proportion of women with chronic vulvar pain who seek care.

Finally, because we asked whether women ever experienced chronic vulvar pain, it is likely that for some women there is a long lag between when they experienced pain and when they responded to the survey. Vulvodynia symptoms can resolve spontaneously with time for some women,²² so it is possible that women responding to the survey were recounting pain that had resolved years before, which may influence how they remember their experiences compared with women with more recent or current pain. We also do not have information on the persistence and duration of pain beyond the fact that it lasted ∼3 months. The duration of pain could very plausibly influence care-seeking behavior.

Conclusion

This large, population-based study suggests that there is a significant unmet need for provider support of women with chronic vulvar pain. We found that some characteristics of women reporting chronic vulvar pain, including having normal BMI compared with being overweight, being married compared with unmarried, and having three or more gynecologic comorbidities, were associated with increased care-seeking behavior. Care seeking also differed by how women described their pain, with women who reported burning (with or without pain on contact) being more likely to report care seeking than women who reported pain on contact only, and also more likely to report receiving treatment. Barriers to care seeking operate on both patients and providers.^11,19 Improvements in obtaining a detailed sexual history and asking about sexual pain may have the potential to help a large number of women get support from their providers.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This work was partially supported by the National Institute of Child Health and Human Development at the National Institutes of Health (grant NIH-NICHD-R01 HD058608). The funder had no role in study design, collection, analysis, or interpretation of data, article writing, nor decision to submit the article for publication.

Supplementary Material

Supplementary Table S1

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Supplementary Material

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