Primary Sjögren’s syndrome (pSS) is the second most common systemic autoimmune disease behind rheumatoid arthritis, with female patients outnumbering males by a ratio of 9:1. Those affected often experience dryness of the eyes and mouth, together with a variety of other symptoms such as extreme fatigue and arthritis. There is also a high prevalence of vaginal dryness and difficult or painful sexual intercourse in women with pSS, along with symptoms common across rheumatic diseases such as pain, stiffness, negative body image, anxiety, reduced libido, and side-effects from treatments.

Jolien F. van Nimwegen and colleagues from the University Medical Centre, Groningen, in the Netherlands compared sexual functioning and sexual distress in women with pSS to healthy controls. Their study looked at 46 women with pSS and 43 age-matched healthy controls, with all participants completing questionnaires about their sexual function, sexual distress, fatigue levels, and anxiety and depression levels.

Women with pSS reported significantly worse scores for levels of desire, arousal, orgasm, lubrication, and pain during intercourse when compared to healthy controls, indicating a higher level of sexual dysfunction in patients with pSS. More patients than controls had impaired sexual functioning (56% vs 27%). Furthermore, patients with pSS had significantly more distress related to sexual function, and fewer patients were sexually active in the previous four weeks compared to the control group (76% vs 93%). Reduced sexual function was associated with more patient-reported symptoms of pSS, reduced motivation, and higher levels of mental fatigue, depressive symptoms, and relationship dissatisfaction.

The study also found that 67% of patients never discussed their sexual complaints with their rheumatologist despite 58% of those patients experiencing sexual dysfunction. The most common reason for this was this was that the rheumatologist never brought it up.

“The sexual health of patients with rheumatic diseases is often neglected, as both patients and physicians may find it difficult to address sexual complaints, partly because effective treatment options are not yet available,” says Jolien van Nimwegen. “However, by simply acknowledging and discussing these complaints rheumatologists can help patients to cope with their sexual problems. If necessary patients can be referred to a gynaecologist or a sexologist.

“Sexual dysfunction should not be ignored in patients with pSS. Asking about sexual complaints is important, especially as many patients will not bring the subject up themselves.”

Key messages:

• Female pSS patients have impaired sexual functioning and more sexual distress than healthy controls
• Sexual functioning in pSS is influenced by vaginal dryness, pain, fatigue, and depressive symptoms
• Communication about sexual complaints is essential during management of pSS