Background/Purpose: Sexual problems are common in women with systemic sclerosis (SSc). SSc is a complicated condition linked to a number of complications including sexual dysfunction. Sexuality is a vital part of life and it is a subject not usually broached. The aims of this study were to determine the prevalence of sexual problems in a large cohort of women with SSc, to evaluate the effects on sexual relationship, sexual activities and the difficulties faced by the women.

Methods:  A total of 100 women  with either limited (lcSSc) or diffuse (dcSSc)   systemic sclerosis were invited to participate in a questionnaire survey. Each participant completed the validated Female Sexual Function Index (FSFI) questionnaire that assesses six domains:  desire, arousal, lubrication, orgasm, satisfaction and pain. Additional psychological questions were included to examine sexual difficulties faced by the women in their interpersonal relationships.

Results:  50 women with SSc responded to the questionnaire. Mean age of the cohort was (mean ±SD, years) 56 ±1.41. 52% of the women who responded had diffuse subset while 40% had been diagnosed with the limited disease. The mean disease duration is similar for both subsets with (mean ±SD, years) 12 ±2.8.  54% of the patients developed sexual difficulties after their diagnosis and the mean duration from SSc diagnosis to first sexual complaint was (mean, ±SD, years) 4.0 ±5.8. 84% of the patients reported significant sexual problems in the overall FSFI domains. The pain domain fared the worst with 56% and 40% of the respondents did not have any sexual activity due to lack of lubrication. 60% of the patients revealed that their sexual complications had caused a significant strain in their relationships. 30% of the respondents admitted to not discussing their problems with their partners due to embarrassment, nonetheless 46% of the women reported to discussing the difficulties.  Among those who discussed their problems with their partners 32 (64%) reassuringly stated that their partners understood the problems. 76% of the subjects reported that they had never been asked about sexual functioning by a health professional. However 52% revealed that they would have discussed their sexual problems if they were concerned, 38% would approach the nurse with their problem while 36% would discuss with their medical practitioners. Interestingly 72% of these women admitted to not raising any concern about their sexual problems.

Conclusion:  Sexual functioning is an essential aspect of life for women with SSc.  Our study revealed that most of the respondents had some form of significant sexual problems. It also showed that sexual impairment can have a significant negative impact for the affected women and their partners. Sexual health is a subject that is usually neglected by both patients and doctors yet it has been associated with psychological difficulties such as depressive symptoms.  It is a subject worth exploring and actively enquiring in order to provide holistic care and improve our patients’ quality of life.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-impact-of-sexual-difficulties-in-women-with-scleroderma-and-interpersonal-relationships/