Primary, Secondary & Tertiary Sexual Dysfunction

The ways in which MS can affect sexuality and expressions of intimacy have been divided into primary, secondary, and tertiary sexual dysfunction (Foley & Werner, 2000).

"Primary sexual dysfunction" is a direct result of neurologic changes that affect the sexual response. In both men and women, this can include a decrease or loss of sex drive, decreased or unpleasant genital sensations, and diminished capacity for orgasm. Men may experience difficulty achieving or maintaining an erection and a decrease in or loss of ejaculatory force or frequency. Women may experience decreased vaginal lubrication, loss of vaginal muscle tone and/or diminished clitoral engorgement.

"Secondary sexual dysfunction" stems from symptoms that do not directly involve nervous pathways to the genital system, such as bladder and bowel problems, fatigue, spasticity, muscle weakness, body or hand tremors, impairments in attention and concentration, and non-genital sensory changes.

"Tertiary sexual dysfunction" results from disability-related psychosocial and cultural issues that can interfere with one's sexual feelings and experiences. For example, some people find it difficult to reconcile the idea of being disabled with being fully sexually expressive. Changes in self-esteem-including the way one feels about one's body, demoralization, depression, or mood swings-can all interfere with intimacy and sexuality. The sexual partnership can be severely challenged by changes within a relationship, such as one person becoming the other's caregiver. Similarly, changes in employment status or role performance within the household are often associated with emotional adjustments that can temporarily interfere with sexual expression. The strain of coping with MS challenges a couple's efforts to communicate openly about their respective experiences and their changing needs for sexual expression and fulfillment.

Prevalence of Sexual Changes in MS

Although normal sexual function changes throughout the life span, the experience of MS can affect an individual's sexual experience in a variety of ways. Studies on the prevalence of perceived sexual concerns or problems in MS range from approximately 40 - 80 % in women and 50 - 90 % in men. The most frequently reported symptoms in men include diminished capacity to obtain or maintain an erection, and difficulty with orgasm. The most frequent changes reported by women include a partial or total loss of libido (sexual desire), and decreased vaginal lubrication or sensation.

A study conducted in Italy on the prevalence of sexual complaints in MS compared a group of MS clinic patients to two other groups: a group of persons with other chronic diseases and a group of persons without illness. All of the groups were matched on sex and age. It was found that the MS group had the highest rates of sexual dysfunction [73.1%], compared to the chronic disease group [39.2%] and the healthy group [12.7%]. The most common problems reported included difficulties with libido and orgasm in both men and women, erectile dysfunction in men, and lack of vaginal lubrication in women (Zorzon et al, 1999).

There is some controversy of the prevalence rates of sexual dysfunction in the general population, depending on the methods used in the study. While the study cited above that conducted interviews in persons with MS, other chronic diseases, and healthy controls found 12.7% of healthy controls reported sexual problems, other studies have found quite different rates. A large U.S. population based study of 1749 women and 1410 men [without MS] reported prevalence rates of at least occasional sexual dysfunction of 43% for women and 31% for men. (Lauman et al., 1999). This study used an anonymous postal survey instead of face-to-face interviews, which may have enabled respondents to answer more freely.

Clearly, more work is needed both in MS and the general population to understand the frequency with which sexual dysfunction occurs. To date, all the MS studies on the prevalence of sexual dysfunction have been problematic since none have utilized measures that have been standardized with an MS population. Recent advances in measurement of intimacy and sexuality and MS will help further our understanding on issues related to prevalence. The Multiple Sclerosis Intimacy and Sexuality Questionnaire-19 (MSISQ-19) is the first measure standardized on an MS population that systematically assesses primary, secondary, and tertiary sexuality (Sanders et al, 2000). It is a 19-item self-report instrument that requires a few minutes to complete.

MS Intimacy and Sexuality Self Assessment
This questionnaire will help you to better understand the impact of MS on your intimacy and sexuality.
MSISQ-19  ( k)