Background/Purpose . Primary Sjögren’s syndrome (pSS) is a chronic and disabling disease, characterized by sicca symptoms of the eyes and mouth as well as fatigue. Besides these well-known symptoms, multiple studies have shown that women with pSS often experience complaints of vaginal dryness and dyspareunia. Our aim was to evaluate sexual dysfunctioning and sexual distress in women with pSS compared to healthy controls, as well as to assess parameters that are associated with sexual dysfunctioning and distress in pSS.

Methods . 46 women with pSS according to the AECG criteria (mean age 46.3 ± 10.5) and 43 age-matched healthy controls (mean age 44.4 ± 11.3) were included. Median disease duration of the patients was 7 years (IQR 4-14). Participants completed self-administered questionnaires, viz. Female Sexual Function Index (FSFI), Female Sexual Distress Scale (FSDS), Multidimensional Fatigue Inventory (MFI), Hospital Anxiety and Depression Scale (HADS), Maudsley Marital Questionnaire (MMQ) and RAND 36-item health survey (RAND-36). In addition, EULAR Sjögren’s Syndrome Disease Activity Index (ESSDAI) and Patient Reported Index (ESSPRI) were completed in pSS patients.

Results . Women with pSS had impaired sexual functioning compared to healthy controls (median FSFI 20.6 vs. 30.3, p<0.001), as reflected by significantly lower scores in the domains of desire, arousal, orgasm, lubrication and pain (figure 1). Furthermore, pSS patients experienced more sexual distress (median FSDS 7 vs. 4, p<0.05) and were sexually active less frequently than controls (76% vs. 93%, p<0.05). In total, 67% of the patients never talked about sexual problems with their rheumatologist. Sexual dysfunctioning correlated significantly with depressive symptoms (HADS), higher ESSPRI score, more symptoms of fatigue (MFI), lower mental quality of life (RAND-36) and relationship dissatisfaction (MMQ), but not with systemic disease activity (ESSDAI).

Conclusion . Women with pSS have impaired sexual function and more sexual distress compared to healthy controls. Sexual dysfunctioning and distress are associated with more patient-reported symptoms of pSS, fatigue and depression. More research is needed to obtain knowledge on the pathogenesis of vaginal sicca symptoms in pSS and the best treatment for this complaint.

Figure 1: FSFI total (A) and subscale (B) scores in patients with pSS and healthy controls. Box-and-whiskers plots (Tukey); boxes indicate medians with IQRs; whiskers indicate 1.5 times the interquartile distances; • indicate outliers.