Rates and correlates of sexual activity and impairment among women with systemic sclerosis


  • Recruiting rheumatologists of the Canadian Scleroderma Research Group are shown in Appendix A.



To assess 1) the rates of sexual activity and impairment, 2) clinical correlates of sexual activity/impairment, and 3) common sources of pain during and after sex in a large sample of female patients with systemic sclerosis (SSc; scleroderma).


We performed a cross-sectional multicenter study of female SSc patients from the Canadian Scleroderma Research Group Registry. Patients underwent medical examinations and clinical histories and were asked whether they had engaged in sexual activities with their partner in the past 4 weeks. Sexually active patients completed a 9-item version of the Female Sexual Function Index (FSFI) and items related to problems that may be linked to sexual dysfunction in SSc. Multivariate logistic regressions assessed independent predictors of activity/inactivity and sexual dysfunction.


A total of 226 (41%) of 547 patients, including 215 (54%) of the 401 patients currently in relationships, reported having engaged in sexual activities with a partner in the past 4 weeks. Among 165 sexually active patients with complete data for all variables, 102 (62%) had FSFI total scores ≤22.5, indicating impaired function. Seventeen percent of the patients were sexually active and not impaired. Independent predictors (P < 0.05) of sexual activity were younger age, fewer gastrointestinal symptoms, and less severe Raynaud's phenomenon symptoms. Sexual impairment was independently associated with older age, higher skin scores, and more severe breathing problems. Vaginal pain was 8 times more likely among women with impairment.


Research is needed to compare the extent of activity and impairment in SSc compared to women without SSc and to develop interventions to address impaired sexual function in women with SSc.


Systemic sclerosis (SSc; scleroderma) is a chronic, multisystem, connective tissue disorder characterized by thickening and fibrosis of the skin and internal organ involvement (1). Approximately 80% of SSc patients are women, with the highest onset rates between ages 30 and 60 years (2). Common psychosocial problems include pain, fatigue, pruritus, body image distress, depressive symptoms, and disability (3–8).

Impaired sexual function is common among women with chronic illnesses (9), including SSc (10–15). Physical and psychological consequences of SSc that may affect sexual functioning include fatigue, depression, shrinking of the mouth and other appearance changes, Raynaud's phenomenon, skin tightening and discomfort, vaginal tightness and dryness, thickening of the skin around the lips, painful finger ulcers and calcium deposits, gastrointestinal symptoms, joint pain, and muscular weakness (10, 16–19).

Existing studies of sexual functioning among women with SSc have concluded that sexual impairment is common, based on frequencies of reported problems (10, 17), comparisons to the general population (11, 12, 15), and comparisons to women with other chronic diseases (14). Common problems reported include vaginal dryness and discomfort, painful intercourse, and reduced frequency and intensity of orgasms (10, 15). Impaired sexual function has been associated with disease duration, pain, body image dissatisfaction, and marital distress (11). Existing studies, however, have been limited by the use of single unvalidated items to assess impairment and problems (10, 17), not explicitly distinguishing between sexual inactivity and impairment (10–14, 17), and small sample sizes (10–12, 17). There is only one study of ≥100 patients that has analyzed sexual inactivity and impairment separately and used a validated measure of sexual function (15), but that study did not include multivariate analyses of factors associated with sexual problems.

The objectives of this study were to assess: 1) the rate of sexual activity among female SSc patients and, specifically, patients in relationships, 2) the rate of sexual impairment among sexually active patients, 3) sociodemographic and clinical variables that differentiate sexually active patients from those inactive due to SSc, 4) sociodemographic and clinical variables associated with sexual impairment among active patients, and 5) sources of pain during and after sexual activity among active patients.

Significance & Innovations

  • Forty-one percent of female patients with systemic sclerosis (SSc; scleroderma) were sexually active, including 54% of those in a relationship, but only 17% overall were sexually active and not impaired.

  • SSc symptoms independently associated with sexual inactivity or sexual impairment included gastrointestinal symptoms, Raynaud's phenomenon symptoms, breathing problems, and extent of skin involvement.

  • Reports of pain were robustly associated with sexual impairment, and vaginal pain most prominently differentiated impaired from nonimpaired women.


Patient sample.

The study sample consisted of female patients recruited from 9 Canadian Scleroderma Research Group (CSRG) Registry sites. Eligible patients are ages ≥18 years, have a diagnosis of SSc confirmed by a registry rheumatologist, and are fluent in English or French. At annual registry visits, patients undergo extensive clinical evaluations and complete a series of self-report questionnaires. All of the patients provided informed consent, and the research ethics board of each participating center approved the data collection protocol. Overall, approximately 80% of patients approached consent to registry enrollment.


Sexual activity.

Patients were classified as sexually active/inactive based on the question, “During the past 4 weeks, have you engaged in sexual activities with your partner?” Patients who answered “no” identified reasons for inactivity, including: “Lack of interest in sex,” “My scleroderma symptoms interfere with sexual activity,” and “I have some other health problem that interferes with sex.”

Sexual impairment.

Many studies on female sexual function have been criticized for coding sexually inactive women as impaired (20). Therefore, sexual impairment was assessed only among sexually active women, using an abbreviated version (21) of the 19-item Female Sexual Function Index (FSFI), which assesses sexual functioning over the past 4 weeks (22). The 9-item abbreviated version included items assessing 5 dimensions of sexual function from the original FSFI, including desire (2 items), arousal (1 item), lubrication (1 item), orgasm (3 items), and pain (2 items). FSFI items are scored on a 1–5 scale with the exception of 2 items related to pain during and following vaginal intercourse, which are scored 0 if vaginal intercourse was not attempted. In the original FSFI, the sum of item scores in each domain is multiplied by a domain factor, so that each domain is weighted equally to obtain a total FSFI score. In the 9-item FSFI used in this study, items were similarly weighted so that the total possible domain score for each domain was 6.0, with total scores ranging from 4.8 to 30. We included women who responded to items from all domains and who were missing ≤1 item from any domain and ≤3 items total.

The original FSFI has good reliability and validity and differentiates between women with and without sexual dysfunction diagnoses (22–25). A 10-item abbreviated version correlated highly with the original 19-item version (r = 0.98) in a sample of 568 women (21, 25). The only difference between the 10-item version and the 9-item version used in this study is that the 9-item version included 2 pain items, rather than 3. In previous studies, the 3 pain items produced substantively identical mean scores and very high estimates of internal consistency (3-item Cronbach's α = 0.94 to 0.98) (22–25). This suggests item redundancy and that weighted total scores of the 9-item and 10-item versions would be comparable since the difference in the number of items is adjusted for by domain weighting. A cutoff score of 22.5 to classify impairment/nonimpairment effectively differentiates women with and without sexual dysfunction based on Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition criteria (21, 25).

In addition to the FSFI items, sexually active women completed a checklist of possible scleroderma-specific pain sources during and following sexual activity, including: 1) finger or hand pain, 2) back pain, 3) vaginal pain, 4) muscle pain, 5) joint pain, 6) skin tightening, 7) skin pain/sensitivity, 8) skin ulcers, 9) Raynaud's phenomenon symptoms, 10) other, and 11) no discomfort or pain. This checklist was derived from sources of pain identified in the SSc literature and from clinicians with experience treating SSc patients.

Relationship status.

Likely availability of a sexual partner was evaluated using the question, “Are you currently in a relationship with a partner?”

Sociodemographic, lifestyle, and disease variables.

Sociodemographic variables, including age, marital status, and race/ethnicity (21, 25), were based on patient report. Alcohol consumption was defined as the patient-reported average number of drinks per day and was categorized as none, <1 drink per day, or ≥1 drink per day. Patients reported smoking status as never, former, or current. Body mass index (BMI) was calculated using data from the clinical examination and based on the Canadian Guidelines for Body Weight Classification in Adults (26), classified as <25 kg/m2 (normal or underweight), 25–29.9 kg/m2 (overweight), and ≥30 kg/m2 (obese).

The presence of Raynaud's phenomenon and disease duration (time from first non–Raynaud's phenomenon disease manifestation) were recorded by the study physicians. Skin involvement was assessed using the modified Rodnan skin thickness score (27), a widely used clinical assessment where the examining rheumatologist records the degree of skin thickening from 0 (no involvement) to 3 (severe thickening) in 17 body areas (total score range 0–51). Patients were classified into limited cutaneous and diffuse cutaneous subsets based on the definition by LeRoy et al (28). Finger contracture severity was assessed via fingertip-to-palm (FTP) distance recorded from the tip of the third finger to the distal palmar crease using the more severely affected hand (29). Finger ulcers were recorded by the study physician and defined as any active or healed digital ulcers, digital necrosis, loss of digital pulp, and auto- or surgical amputation of any digits. Severity of gastrointestinal symptoms, Raynaud's phenomenon, and breathing problems in the past week was measured using 11-point numerical rating scales (NRS; 0 = no disease, 10 = very severe disease) derived from the visual analog scales (VAS) in the Scleroderma Health Assessment Questionnaire (30). NRS measures perform similarly to VAS measures, but are generally easier to score (31).

Hemoglobin levels were measured in gm/liter. Pulmonary hypertension was defined as systolic pulmonary artery pressure ≥45 mm Hg on cardiac echocardiography (32). The presence/absence of interstitial lung disease was defined according to the results of high-resolution computed tomography scans of the lungs, when available, or by physician reports of the presence of typical basilar Velcro-like crackles on lung auscultation and/or chest radiograph reports of the presence of increased interstitial markings (not thought to be due to congestive heart failure) or lung fibrosis when lung scans were not available.

Statistical analyses.

The percentage of women who reported sexual activity was calculated for all women sampled and for women who reported currently being in a relationship with a partner. Of women who reported being in relationships, those that reported being sexually active (defined in the FSFI as having engaged in sexual activities in the past 4 weeks) were compared to patients who reported being sexually inactive due to scleroderma symptoms on sociodemographic, lifestyle, and disease factors using logistic regression models. Women who reported being inactive for other reasons were not included in this analysis since the purpose was to identify potentially modifiable disease factors linked to sexual activity/inactivity in SSc. Logistic regression analyses were also conducted to compare women with (FSFI total score ≤22.5) and without sexual impairment (FSFI total score >22.5) among those who reported sexual activity. For multivariate models, given sample size considerations related to the number of predictor variables per outcome (e.g., 8–10 patients in the smaller outcome group per predictor variable [33]), we selected a priori a core set of independent variables potentially related to sexual impairment in SSc (age, skin score, FTP distance, hemoglobin, severity of gastrointestinal symptoms, severity of Raynaud's phenomenon, severity of breathing problems, and presence/absence of interstitial lung disease). We conducted post hoc analyses that included disease duration, alcohol consumption, BMI, and pulmonary hypertension as additional variables in the regression model, one at a time. We also reran the models with age as a continuous, rather than a categorical, variable and substituted disease duration for age.

Discrimination and calibration of the logistic regression models were assessed with the c-index and Hosmer-Lemeshow goodness-of-fit (HL) statistic, respectively (34). The c-index is the percentage of comparisons where sexually active (or sexually impaired) patients had a higher predicted probability of being sexually active (or sexually impaired) than inactive patients (or nonimpaired patients), for all possible pairs of active and inactive patients (or impaired and nonimpaired patients). The HL statistic is a measure of the accuracy of the predicted number of cases of active or impaired patients compared to the number of patients who actually reported sexual activity or impairment across the spectrum of probabilities.

In addition, for sexually active patients, sources of pain during and after sex were compared for patients with and without impaired sexual function using the chi-square statistic or Fisher's exact test. Hochberg's sequential method was applied to adjust for multiple comparisons (35).

All analyses were conducted using PASW Statistics, version 18.0, and statistical tests were 2-sided with a significance level of P values less than 0.05.


There were 588 women who completed questionnaires between October 2008 and November 2010. Of these, 547 (93.0%) had complete sexual activity and impairment data, including 226 (41.3%) who were sexually active, of whom 95 (42.0%) were not impaired (FSFI total score >22.5). Overall, 95 (17.4%) of 547 women were active without impairment (Table 1). A flow of patients through the study analyses is shown in Figure 1.

Table 1. Rates of sexual activity without impairment by age group and marital status
 NNo. (%) activeNo. (%) not impaired among activeNo. (%) active without impairment
  • *

    Seven patients did not report marital status.

Age group, years    
 18–392513 (52)7 (54)7 (28)
 40–4910367 (65)39 (58)39 (38)
 50–5917181 (47)27 (33)27 (16)
 ≥6024865 (26)22 (34)22 (9)
Marital status*    
 Married373189 (51)75 (40)75 (20)
 Not married16733 (20)18 (55)18 (11)
Total547226 (41)95 (42)95 (17)
Figure 1.

Flow of patients through the study. SSc = systemic sclerosis (scleroderma).

Analysis of sexual activity.

Of the 547 patients, 401 (73.3%) were in a relationship, including 215 (53.6%) who were sexually active. Reasons for inactivity (n = 186) included “lack of interest in sex” (n = 150 [80.6%]), “my scleroderma symptoms interfere with sexual activity” (n = 81 [43.5%]), and “I have some other health problem that interferes with sex” (n = 60 [32.3%]).

There were 296 patients in relationships who were sexually active (n = 215 [72.6%]) or inactive because scleroderma symptoms interfered (n = 81 [27.4%]). Of these, 237 (0.1%) had complete data for all variables in multivariate regression models, including 174 (73.4%) who were sexually active and 63 (26.6%) who were not. As shown in Table 2, the majority of these patients were ages ≥50 years (n = 178 [75.1%]). Most patients were married (n = 219 [92.7%]), were white (n = 211 [92.5%]), consumed <1 alcoholic drink per day (n = 206 [87.3%]), and had normal/underweight BMI (BMI <25 kg/m2; n = 122 [51.5%]). Only 10 patients with BMI <25 kg/m2 had BMI <18.5 kg/m2 (underweight). Most patients had limited cutaneous SSc (n = 148 [65.8%]), with an average disease duration of approximately 10 years.

Table 2. Descriptive statistics for women with SSc in relationships who report sexual activity in the last 4 weeks and who report being sexually inactive due to SSc*
 Overall (n = 237)Active (n = 174 [73%])Inactive due to SSc (n = 63 [27%])
  • *

    Values are the number (percentage) unless otherwise indicated. SSc = systemic sclerosis (scleroderma); GI = gastrointestinal.

Age group, years   
 18–3975 (71)2 (29)
 40–495245 (86)7 (14)
 50–599267 (73)25 (27)
 ≥608657 (66)29 (34)
Marital status (n = 236)   
 Married219158 (72)61 (28)
 Not married1715 (88)2 (12)
Race/ethnicity (n = 228)   
 White211156 (74)55 (26)
 Nonwhite1712 (71)5 (29)
Alcohol consumption (n = 236)   
 None11069 (63)41 (37)
 <1 drink per day9677 (80)19 (20)
 ≥1 drink per day3028 (93)2 (7)
Smoking status   
 Never11182 (74)29 (26)
 Former10578 (74)27 (26)
 Current2114 (67)7 (33)
Body mass index, kg/m2   
 <25122100 (82)22 (18)
 25–29.97149 (69)22 (31)
 ≥304425 (57)19 (43)
Disease classification (n = 225)   
 Limited cutaneous148107 (72)42 (28)
 Diffuse cutaneous7656 (74)20 (26)
Skin scores, mean ± SD8.43 ± 8.07.80 ± 7.410.19 ± 9.2
Disease duration (n = 233), mean ± SD years9.86 ± 8.89.93 ± 9.09.64 ± 8.4
Fingertip-to-palm distance, mean ± SD0.98 ± 1.80.89 ± 1.61.23 ± 2.1
Hemoglobin, mean ± SD gm/liter126.90 ± 12.9127.78 ± 11.9124.48 ± 15.2
Severity of GI symptoms, mean ± SD1.71 ± 2.31.24 ± 1.93.00 ± 2.9
Pulmonary hypertension (n = 210)   
 No190151 (80)39 (20)
 Yes209 (45)11 (55)
Interstitial lung disease   
 No162124 (76)38 (24)
 Yes7550 (67)25 (33)
Finger ulcers   
 No10882 (76)26 (24)
 Yes12992 (71)37 (29)
Severity of Raynaud's phenomenon symptoms, mean ± SD3.13 ± 2.92.55 ± 2.64.71 ± 3.3
Severity of breathing problems, mean ± SD1.89 ± 2.61.47 ± 2.33.03 ± 2.9
Menopause status (n = 231)   
 No163119 (73)44 (27)
 Yes6852 (76)16 (24)

As shown in Table 3, in bivariate analyses, patients ages ≥60 years, patients who were overweight (BMI 25–29.9 kg/m2) or obese (BMI ≥30 kg/m2), patients with pulmonary hypertension, patients with higher skin scores, and patients with more severe gastrointestinal symptoms, Raynaud's phenomenon symptoms, or breathing problems were significantly less likely to be sexually active. Patients who consumed alcohol, compared to patients who did not, were more likely to be sexually active. In the core multivariate logistic regression analysis, older patients (age 50–59 years: odds ratio [OR] 0.24, 95% confidence interval [95% CI] 0.08–0.73, P = 0.012; age ≥60 years: OR 0.12, 95% CI 0.04–0.37, P < 0.001), patients with more severe gastrointestinal symptoms (OR 0.80, 95% CI 0.69–0.94, P = 0.005), and patients with more severe Raynaud's phenomenon symptoms (OR 0.82, 95% CI 0.72–0.93, P = 0.003) were less likely to be sexually active. The model had adequate discriminitive power (c-index = 0.80) and calibration (P = 0.219 for the HL statistic). In post hoc sensitivity analyses, obese patients (BMI ≥30 kg/m2: OR 0.29, 95% CI 0.11–0.72, P = 0.008) were less likely to be sexually active, and patients who consumed at least 1 alcoholic drink per day (OR 8.16, 95% CI 1.48–45.00, P = 0.016) were more likely to be sexually active. Pulmonary hypertension and disease duration were not significantly related to the likelihood of sexual activity. Inclusion of these variables in the model did not substantively influence the association of any of the variables in the core model with sexual activity, nor did the use of age and BMI as continuous variables or the use of disease duration instead of age.

Table 3. Unadjusted and adjusted ORs for reporting sexual relations with a partner in the last 4 weeks (n = 237)*
 Unadjusted OR95% CIPAdjusted OR95% CIP
  • *

    OR = odds ratio; 95% CI = 95% confidence interval; GI = gastrointestinal.

Age group, years      
 ≥600.310.12–0.760.0110.120.04–0.37< 0.001
Not married2.900.64–13.040.166   
Nonwhite race/ethnicity0.850.29–2.510.763   
Alcohol consumption      
 <1 drink per day2.411.28–4.540.007   
 ≥1 drink per day8.321.88–36.750.005   
Smoking status      
Body mass index, kg/m2      
Skin scores0.970.93–1.000.0450.980.94–1.030.382
Disease duration, years1.000.97–1.040.827   
Fingertip-to-palm distance0.900.77–1.050.1910.890.73–1.090.268
Hemoglobin, gm/liter1.021.00–1.040.0831.010.99–1.040.336
Severity of GI symptoms0.740.65–0.84< 0.0010.800.69–0.940.005
Pulmonary hypertension0.210.08–0.550.001   
Interstitial lung disease0.610.34–1.120.1110.810.39–1.670.569
Finger ulcers0.790.44–1.410.424   
Severity of Raynaud's phenomenon symptoms0.780.71–0.87< 0.0010.820.72–0.930.003
Severity of breathing problems0.810.72–0.90< 0.0010.950.82–1.090.450

Analysis of sexual impairment.

Of the 174 sexually active patients, 165 had FSFI total scores. Of these, 102 (61.8%) were classified as experiencing sexual impairment (Table 4). As shown in Table 5, in bivariate analyses, patients ages ≥50 years, patients with higher skin scores, and patients with more severe breathing problems were more likely to be sexually impaired. In the core multivariate logistic regression analysis, older patients (age 50–59 years: OR 3.02, 95% CI 1.25–7.26, P = 0.014; age ≥60 years: OR 3.28, 95% CI 1.26–8.53, P = 0.015), patients with higher skin scores (OR 1.06, 95% CI 1.00–1.13, P = 0.039), and patients with more severe breathing problems (OR 1.27, 95% CI 1.04–1.56, P = 0.018) were more likely to be sexually impaired. The model had adequate discriminitive power (c-index = 0.71) and calibration (P = 0.384 for the HL statistic). In post hoc sensitivity analyses, patients who consumed between 0 and 1 alcoholic drinks per day (OR 2.63, 95% CI 1.18–5.86, P = 0.018) were more likely to be sexually impaired. BMI, disease duration, and pulmonary hypertension were not significantly related to sexual impairment. Inclusion of these variables in the model, one at a time, in addition to the core model variables did not substantively influence the association of any of the variables in the core model with sexual impairment. Similarly, inserting disease duration into the model in place of age and using age and BMI as continuous variables rather than categorical variables did not affect the results (data not shown).

Table 4. Descriptive statistics for women with systemic sclerosis in relationships who are sexually active classified as sexually impaired (FSFI total score ≤22.5) versus not impaired (FSFI total score >22.5)*
 Overall (n = 165)Not impaired (n = 63 [38%])Sexually impaired (n = 102 [62%])
  • *

    Values are the number (percentage) unless otherwise indicated. FSFI = Female Sexual Function Index; GI = gastrointestinal.

Age group, years   
 18–3952 (40)3 (60)
 40–494524 (53)21 (47)
 50–596320 (32)43 (68)
 ≥605217 (33)35 (67)
Marital status (n = 164)   
 Married14955 (37)94 (63)
 Not married158 (53)7 (47)
Race/ethnicity (n = 159)   
 White14758 (40)89 (60)
 Nonwhite124 (33)8 (67)
Alcohol consumption   
 None6527 (42)38 (58)
 <1 drink per day7322 (30)51 (70)
 ≥1 drink per day2714 (52)13 (48)
Smoking status   
 Never7929 (37)50 (63)
 Former7430 (40)44 (60)
 Current124 (33)8 (67)
Body mass index, kg/m2   
 <259535 (37)60 (63)
 25–29.94618 (39)28 (61)
 ≥302410 (42)14 (58)
Disease classification (n = 155)   
 Limited cutaneous10239 (38)63 (62)
 Diffuse cutaneous5317 (32)36 (68)
Skin scores, mean ± SD7.76 ± 7.46.24 ± 5.58.71 ± 8.3
Disease duration (n = 163), mean ± SD years9.82 ± 8.78.58 ± 7.710.56 ± 9.2
Fingertip-to-palm distance, mean ± SD0.88 ± 1.60.74 ± 1.70.97 ± 1.6
Hemoglobin, mean ± SD gm/liter127.87 ± 12.0127.86 ± 11.5127.88 ± 12.4
Severity of GI symptoms, mean ± SD1.20 ± 1.91.11 ± 1.81.25 ± 2.0
Pulmonary hypertension (n = 153)   
 No14553 (37)92 (63)
 Yes84 (50)4 (50)
Interstitial lung disease   
 No11744 (38)73 (62)
 Yes4819 (40)29 (60)
Finger ulcers   
 No7933 (42)46 (58)
 Yes8630 (35)56 (65)
Severity of Raynaud's phenomenon symptoms, mean ± SD2.41 ± 2.52.33 ± 2.52.46 ± 2.5
Severity of breathing problems, mean ± SD1.37 ± 2.20.87 ± 2.11.68 ± 2.3
Menopause status (n = 162)   
 No11245 (40)67 (60)
 Yes5017 (34)33 (66)
Table 5. Unadjusted and adjusted ORs for being sexually impaired (Female Sexual Function Index total score ≤22.5, n = 165)*
 Unadjusted OR95% CIPAdjusted OR95% CIP
  • *

    OR = odds ratio; 95% CI = 95% confidence interval; GI = gastrointestinal.

Age group, years      
Not married0.510.18–1.490.219   
Nonwhite race/ethnicity1.300.38–4.530.677   
Alcohol consumption      
 <1 drink/day1.640.82–3.330.164   
 ≥1 drink/day0.660.27–1.630.366   
Smoking status      
Body mass index, kg/m2      
Skin scores1.051.00–1.100.0421.061.00–1.130.039
Disease duration, years1.030.99–1.070.160   
Fingertip-to-palm distance1.100.89–1.340.3841.100.87–1.400.434
Hemoglobin, gm/liter1.000.97–1.030.9901.000.97–1.030.938
Severity of GI symptoms1.040.88–1.240.6321.000.82–1.250.947
Pulmonary hypertension0.5760.14–2.400.449   
Interstitial lung disease0.9200.46–1.830.8120.6100.28–1.330.212
Finger ulcers1.3390.71–2.510.363   
Severity of Raynaud's phenomenon symptoms1.0220.90–1.160.7460.9570.81–1.130.605
Severity of breathing problems1.2091.02–1.440.0311.2731.04–1.560.018

Sources of pain.

As shown in Table 6, among the 165 sexually active patients, 103 (62.4%) reported ≥1 pain source during sexual activity and 62 (37.6%) after sexual activity, with both substantially higher for women with impairment. Pain sources reported by at least 10% of women included vaginal, joint, muscle, finger or hand, and back pain during activity and vaginal and joint pain after activity. Of the 102 women classified as sexually impaired, 82 (80.4%) experienced pain during or after sexual activity, compared to 24 (38.1%) of 63 women who were not impaired. Controlling for multiple comparisons, only vaginal pain was significantly more common among impaired women (P < 0.001). Impaired women reported an average of 1.8 and 0.6 sources of pain during and after sexual activity compared to 1.0 and 0.3 sources for nonimpaired women, respectively (both P < 0.001). The number of pain symptoms was not significantly associated with age or menopausal status.

Table 6. Sources of pain reported by sexually active patients
 OverallNot impaired, no. (%)Sexually impaired, no. (%)Significance P
  • *

    Not statistically significant, controlling for multiple comparisons using Hochberg's sequential method.

  • Statistically significant, controlling for multiple comparisons using Hochberg's sequential method.

  • Statistically significant, no adjustment for multiple comparisons.

During sex    
 Finger or hand pain233 (5)20 (20)0.007*
 Back pain184 (6)14 (14)0.140*
 Vaginal pain657 (11)58 (57)< 0.001
 Muscle pain275 (8)22 (22)0.021*
 Joint pain3511 (17)24 (24)0.354*
 Skin tightening90 (0)9 (9)0.014*
 Skin pain or sensitivity131 (2)12 (12)0.018*
 Skin ulcers72 (3)5 (5)0.709*
 Raynaud's phenomenon symptoms101 (2)9 (9)0.091*
 Other81 (2)7 (7)0.156*
 Any pain10324 (38)79 (77)< 0.001
After sex    
 Finger or hand pain151 (2)14 (14)0.008*
 Back pain143 (5)11 (11)0.172*
 Vaginal pain271 (2)26 (25)< 0.001
 Muscle pain164 (6)12 (12)0.246*
 Joint pain204 (6)16 (16)0.071*
 Skin tightening70 (0)7 (7)0.044*
 Skin pain or sensitivity71 (2)6 (6)0.252*
 Skin ulcers31 (2)2 (2)1.00*
 Raynaud's phenomenon symptoms71 (2)6 (6)0.252*
 Other20 (0)2 (2)0.524*
 Any pain6211 (18)51 (50)< 0.001


The main finding of this study was that only 17% of female patients with SSc were sexually active without sexual impairment. Overall, 41% of the women in the study reported being sexually active, including 54% of those in relationships. Among sexually active patients, 58% were classified as sexually impaired. In addition to older age, a number of SSc symptoms were associated with sexual inactivity or sexual impairment, including gastrointestinal symptoms, Raynaud's phenomenon symptoms, breathing problems, and extent of skin involvement. Sexual impairment was robustly associated with reports of pain, and women who were sexually impaired were more than twice as likely to report pain during or after sex as women who were not impaired. Most prominently, women with sexual impairment were more than 8 times as likely to report vaginal pain than women not classified as sexually impaired.

To date, one large study has used the FSFI to evaluate sexual function in the general population. That study sampled more than 3,200 women ages 30–79 years in the Boston metropolitan area and found that 51% of women in the general population were sexually active, and 38% of active women were sexually impaired, resulting in 31% who were active and not impaired (21). It is not clear, however, how this compares to women with SSc in our study. This is because greater sexual activity and less impairment are highly associated with younger age and being in a relationship, but the Boston general population study did not provide information on activity and impairment by marital status and age. In the current study, 77% of women were ages ≥50 years compared to 42% in the Boston study. On the other hand, 69% in the SSc sample were married versus 45% in the Boston general population sample.

Our finding that higher skin scores are associated with increased likelihood of sexual impairment is similar to the finding from Bhadauria et al that skin tightness is adversely related to sexual relations (10). It is not surprising that pain was robustly linked to sexual impairment, as many studies of patients with arthritis and other chronic pain conditions have found that pain is strongly associated with reduced sexual function (36–38). Similarly, other studies of patients with SSc have identified specific sources of pain associated with sexual impairment in bivariate analyses, including vaginal pain, joint pain, skin pain, gastrointestinal pain, and pain from Raynaud's phenomenon (10, 11, 15). We found that although many sources of pain may influence sexual function, vaginal pain most clearly distinguished women with and without impairment.

Several authors have suggested steps that women with SSc can take that may reduce their pain and discomfort during sexual activity (10, 16, 17). For instance, the use of a water-based lubricant may be useful to reduce vaginal dryness and dyspareunia (10–12, 15–17). Remaining partly clothed, using extra blankets, and adjusting the room temperature may help to keep warm and reduce the likelihood of a Raynaud's phenomenon episode (14, 16). A warm bath before sexual activities, attempting alternative sexual positions, and using pillows may reduce the effects of painful joints (10, 12, 14, 16). In addition, antiinflammatory drugs and muscle relaxants may help with muscle and joint pain (12, 16). Eating small meals and/or avoiding eating right before sexual activity may be helpful for patients with gastrointestinal problems (14, 16). Good communication during sexual activity has also been emphasized so that partners are aware of what is pleasurable and painful (16). It is also possible that sexual function could be improved through range of motion exercises to reduce joint pain and stiffness prior to sexual activity, massage or exercises to lessen mouth tightening and improve mouth function, and massage or gentle manual stretching to lessen vaginal tightness. The degree to which these suggestions are effective in reducing barriers to sexual activity and enhancing the sexual experience of women with SSc, however, has not been tested.

There are a number of limitations that should be considered in interpreting the results of our study. First, it was cross-sectional and conducted with a convenience sample of patients enrolled in the CSRG Registry. Patients with very severe SSc who were too sick to participate, as well as those who may have died earlier in their disease course, are not enrolled in the registry, which may result in an overrepresentation of healthier patients. Although approximately 80% of approached patients enroll in the registry, data on patients who do not participate are not available.

We do not know to what degree having sexual problems may have influenced whether or not women in our sample were in relationships. In addition, 32% of sexually inactive patients indicated having other health problems, and most were taking medications. However, the questions in the survey did not provide us with any information to assess the relationship between these variables and sexual activity and impairment. A limitation shared by this study and other studies that have used similar methodology (21) is that women may have been classified as being inactive due to the unavailability of a partner, for reasons such as absence during the specified time period or a medical condition. Furthermore, we did not assess sexual orientation in our study, although the questions that were asked would apply across sexual orientations.

Another limitation is that no previous studies have used the 9-item version of the FSFI, and no specific validation has been done with the 9-item version. Similarly, the checklist used to gather information on the source of pain, including vaginal pain, was a self-report checklist designed for SSc that has not been specifically validated. It is possible that women without SSc of a similar age would also endorse a significant number of these symptoms, but the degree to which this is the case is not known. Measures of gastrointestinal symptoms, Raynaud's phenomenon, and severity of breathing problems were patient reported; therefore, it is possible that there was some misclassification within these measures.

In terms of comparison samples, although there is published literature on a general population sample (21), there are limitations in comparing these rates to our SSc sample. Marital status and age are the most prominent predictors of rates of activity and impairment; the weighted sampling from the population study did not allow direct comparisons by age and marital status with women from our study. Finally, we did not examine the effects of potential mediators, such as body image, fatigue, or relationship dissatisfaction, that may link disease symptoms with sexual activity and impairment in SSc. For instance, reduced sexual function has been associated with pain and body image dissatisfaction (13) as well as marital dissatisfaction (11). Future research should build upon this study and examine potential mediators of sexual activity and impairment.

In summary, many female SSc patients in relationships are sexually active, although few are active without significant problems. Gastrointestinal symptoms and Raynaud's phenomenon symptoms were independently associated with decreased sexual activity, while breathing problems and higher skin scores were independently associated with sexual impairment. Age was independently associated with both decreased sexual activity and increased sexual impairment. Rates of pain were high among SSc patients, and sexually impaired patients were significantly more likely to report any sources of pain and, most prominently, vaginal pain. Research is needed to determine the extent of activity and impairment in SSc compared to women without SSc and to evaluate strategies that have been recommended to improve sexual functioning in women with SSc.


All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be published. Dr. Thombs had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study conception and design. Hudson, Knafo, Baron, Nielson, Hill, Thombs.

Acquisition of data. Levis, Hudson, Knafo, Baron, Hill, Thombs.

Analysis and interpretation of data. Levis, Hudson, Baron, Hill, Thombs.


None of the sponsors of the Canadian Scleroderma Research Group (CSRG) had any role in the study design, data collection, data analysis, or writing of the manuscript. No CSRG sponsor was consulted in relation to this study, none reviewed the manuscript submitted for publication, and publication was not contingent upon sponsor approval.

Appendix A


Recruiting rheumatologists of the Canadian Scleroderma Research Group are as follows: J. Pope, London, Ontario; M. Baron, J.-P. Mathieu, M. Hudson, S. Ligier, T. Grodzicky, G. Gyger, Montreal, Quebec; J. Markland, Saskatoon, Saskatchewan; N. A. Khalidi, E. Kaminska, Hamilton, Ontario; A. Masetto, Sherbrooke, Quebec; E. Sutton, Halifax, Nova Scotia; N. Jones, Edmonton, Alberta; D. Robinson, Winnipeg, Manitoba; P. Docherty, Moncton, New Brunswick; S. LeClercq, Calgary, Alberta; C. Thorne, Newmarket, Ontario; M. Fritzler, Advanced Diagnostics Laboratory, Calgary, Alberta, Canada.