Prevalence and correlates of sexual dysfunction among women with bladder pain syndrome/interstitial cystitis

Bladder pain syndrome/interstitial cystitis (BPS/IC) is characterized by a constellation of bladder symptoms, including bladder/pelvic pain, and urinary frequency or urgency. 1 Sexual dysfunction issues have been reported among women with BPS/IC and can contribute to reduced quality of life. 2 Sexual dysfunction symptoms among women with BPS/IC have included deep dyspareunia (i.e., deep or burning pain during or after intercourse), symptomatic flares (e.g., pelvic pain) after sexual intercourse, and decreased sexual desire, arousal, and orgasm frequency. 3 – 5 Similar sexual dysfunction symptoms have been reported among women with disorders related to BPS/IC, including overactive bladder, endometriosis, urinary incontinence, and vulvodynia. 6 – 12 The prevalence of sexual dysfunction among women with BPS/IC is unknown. Representative samples of the U.S. or specific areas of the U.S. suggest that about 40% of women in the general population report at least one sexual dysfunction, such as lack of interest (31%), arousal difficulties (19%), inability to achieve orgasm (25%), performance anxiety (12%), pain (15%), and lack of pleasure (23%). 10 , 13 , 14 In convenience samples of women with BPS/IC, the range of dysfunction across studies is wide (from 13–87%). 2 , 15 – 19 Research has found significantly worse sexual functioning among BPS/IC patients than those in the general population or age-matched control patients on several different sexual functioning domains, including lack of desire, reduced arousal, lubrication difficulties, low orgasm frequency, dissatisfaction, and pain. 3 , 4 , 20 However, to determine the full extent of sexual dysfunction issues among women with BPS/IC, representative probability samples of women with BPS/IC are needed. Almost no research has been conduced regarding risk factors for sexual dysfunction among women with BPS/IC, or whether women with BPS/IC receive medical help for sexual dysfunction issues. Studies of women in the general population find that greater sexual dysfunction is associated with lower socio-economic status, being married, non-Latino ethnicity, poor mental and physical health, stress-related symptoms, and depression. 10 , 13 , 14 , 21 – 24 Some types of dysfunction (e.g., lubrication) are associated with older age, whereas other types (e.g., pain during sex) are associated with younger age. A small proportion (about 10–20%) of those U.S. women with sexual dysfunction seek medical help for the condition. 10 As part of the RAND Interstitial Cystitis Epidemiology Study (RICE), we conducted a probability sample survey of women in U.S. households. After identifying women with BPS/IC symptoms using symptom reports, 25 we assessed presence of sexual dysfunction symptoms, as well as medical help-seeking for dysfunction. We assessed several risk factors for sexual dysfunction, including mental health factors (anxiety and depression), co-morbid diseases, and socio-demographic characteristics. Such information is critical for developing clinic-based interventions to identify and treat sexual dysfunction among women with BPS/IC, as well as to increase awareness among providers about the extent of dysfunction in BPS/IC populations.

Our analysis is based on the women who reported having a current sexual partner (n=985, 74.6% weighted). Mean age of the sample was 43.6 years (SD=16.7). Mean scores on the PHQ depression scale and SF36 physical function scale were 8.1 (SD=7.2) and 39.2 (SD=14.9), respectively. For the ICSI, the average score was 11.5 (SD=4.1). As shown in Table 1 , the majority (81%) was White and about 30% had a four-year college degree. About a third had annual incomes below $35,000. Nearly all (98%) had ever had sexual intercourse. Among the 72% of women in the sample who engaged in vaginal sex in the past year, the median annual frequency of vaginal sex was 36; a quarter of women reported an annual frequency of 12 or fewer times, and 75% reported an annual frequency of 100 or fewer times. Table 2 shows the percentages of women with a current partner who experienced each type of symptom. Most women (88%) with a current partner endorsed at least one general sexual dysfunction symptom in the past 4 weeks; 90% of those with a current partner reported any BPS/IC-specific sexual dysfunction symptoms during the same time period. Of all the BPS/IC-specific symptoms, bladder pain during and/or after sex was the most prevalent, experienced by about two-thirds of women with a current partner in the past 4 weeks. Lack of sexual interest was the most common general sexual dysfunction symptom, experienced by 65% of women with a current partner in the past 4 weeks. A quarter of women with current sex partners reported seeking medical help for their sexual dysfunction symptoms, and of those, 4% said that the problem was resolved completely and 26% said it was resolved partly. In bivariate models, greater BPS/IC symptom severity was associated with both general sexual dysfunction [b(SE) = .03 (.005), p < .0001] and BPS/IC specific sexual dysfunction [b(SE) = .05 (.005), p < .0001]. As shown in Table 3 , in multivariate models, more severe BPS/IC symptoms were related to BPS/IC-specific sexual dysfunction (partial R 2 = .05, p < .001). Predictors of BPS/IC-specific sexual dysfunction also included being younger, having depression symptoms, and perceiving worse general health. BPS/IC symptom severity was not associated with general sexual dysfunction in multivariate models; multivariate predictors of general sexual dysfunction included non-Latino race/ethnicity, being married, and having depression symptoms.

Findings from the RICE cohort suggest that BPS/IC symptoms are related to sexual dysfunction. Further, although about three-quarters of women with BPS/IC do not seek help for their sexual dysfunction symptoms, a larger percentage of women with BPS/IC symptoms seek help compared to women in the general public. Because women may be reluctant to discuss dysfunction during the medical encounter, clinicians are advised to initiate discussion of sexual dysfunction issues, as well as to help coordinate care with sexual health specialists, including psychologists, physical therapists, and counselors.

The RAND Human Subjects Protection Committee approved all study procedures. We screened 146,231 households with telephones to identify those with a female aged 18 or older who had bladder symptoms or who reported a diagnosis of BPS/IC. Among those reporting symptoms or a prior BPS/IC diagnosis, we conducted second-stage telephone screening to identify women who met the following high-specificity RICE symptom criteria, based on our prior research 1 , 25 : (1) pain, pressure, or discomfort in pelvic area; (2) daytime urinary frequency 10+ times or urgency due to pain, pressure, or discomfort (not fear of wetting); (3) pain worsens as the bladder fills; (4) bladder symptoms did not resolve after treatment with antibiotics; and (5) never treated with hormone injections for endometriosis. Following prior BPS/IC research (i.e., the Interstitial Cystitis Database), 18 participants were excluded if they were ever diagnosed with genital herpes, bladder cancer, diverticulum of the urethra, a spinal cord injury, stroke, Parkinson's disease, multiple sclerosis, spina bifida, tuberculosis affecting the bladder, or cancer of the uterus, ovaries, vagina, or urethra; ever had Cyclophosphamide (Cytoxan) therapy, or radiation therapy to pelvic area; or were currently or possibly pregnant. A total of 1,469 women met the RICE criteria for BPS/IC symptoms and completed a 1-hour telephone interview. We applied population weights derived from data obtained in the first stage of screening. Non-response weights were created using the inverse of predicted probabilities from a logistic regression model predicting whether or not the household was successfully screened. The model included households that had at least one female with either bladder symptoms or diagnosis, and that provided permission for future contact by RAND interviewers. The model controlled for whether the potentially eligible woman had symptoms only, a self-reported diagnosis only, or both; general respondent characteristics (gender, age, race/ethnicity, educational attainment, whether head of household, employment, and marital status); and household characteristics (total income, home owned by household, and indicators of children under 6, 6–11, and 12–17 years-old). Within this nonresponse model, simple imputation of missing predictors was done for observations that were missing values for household income (median imputed) and children indictors (categorical means imputed). Women who had a current partner were asked the number of times that they engaged in vaginal sex in the past year, and the extent to which they experienced six BPS/IC-specific sexual dysfunction symptoms and five general sexual dysfunction symptoms in the past four weeks (“not a problem”; “a little of a problem”; “somewhat of a problem”; or “very much a problem”). Items were averaged within each scale; internal consistency was very good [α = .88 for general and α = .84 for BPS/IC-specific scale, the RICE-Bladder Specific Sexual Dysfunction (BSSD-6) scale]. Scale values were also dichotomized to indicate presence of any symptom (i.e., any response to any item other than “not a problem”). General sexual dysfunction items were drawn from a prior general population survey. 10 The content of the RICE BSSD-6 items was developed based on a literature review and our formative work, which suggested key symptoms of BPS/IC that could be related to sexual function. 1 , 26 Items are shown in Table 2 . For descriptive purposes, we assessed medical help-seeking for sexual dysfunction symptoms: “Sometimes when people have problems like this, they go to someone like a doctor or other health professional for help. In the past 12 months, have you tried to get help from a doctor or other health professional for the sexual problem(s) you have experienced?” If participants responded in the affirmative, they were next asked “Was the problem resolved?” with response options “completely,” “partly,” and “not resolved.” BPS/IC symptom severity was assessed with the Interstitial Cystitis Symptom Index (ICSI), which assesses the presence and degree of IC symptoms in the past month (α = 0.59). 27 We used standard questions to assess age, income, education, and marital status. For those women who were missing a response to the RICE income question, we used the response provided at the first stage of screening. When that response was also missing (n = 107; 10.9%), we imputed the mean income across non-missing cases. The PHQ-8 (Patient Health Questionnaire-8 items) was used to assess depression symptoms. 28 A score of 10 or greater corresponds with moderately severe depression and is indicative of probable depressive disorder. The PHQ has a sensitivity of 73% and a specificity of 98% for the diagnosis of major depression. Health-related quality of life was measured using the SF-36 physical health scale, which includes items for physical functioning, role functioning, bodily pain, general health, vitality, social functioning, and mental health. 29 SF-36 scales were scored on a standardized T-score metric with a mean of 50 and standard deviation of 10, derived from the U.S. general population of adult females. We first examined descriptive statistics, including the weighted percentage of women reporting each type of sexual dysfunction symptom; average general sexual dysfunction and BPS/IC-specific sexual dysfunction scores; and percentage of women who sought medical help for sexual dysfunction issues, and if so, their satisfaction with help-seeking. We also examined sexual behavior patterns, including the percentage with a current sexual partner and frequency of vaginal intercourse in the past year. We conducted bivariate and multivariate linear regressions predicting each type of sexual dysfunction as a function of BPS/IC symptom severity. Multivariate models controlled for age, race/ethnicity, income, education, marital status, depression symptoms, and perceived physical health. Scales measuring depression, physical health, and BPS/IC symptom severity were standardized. Analyses were performed in SAS version 9.1 and accounted for the design effects of weights using the linearization method implemented by SAS survey procedures. 30