Results from the Spring, 2006 North American Research Committee on Multiple Sclerosis (NARCOMS) Project were reviewed. Participants were asked to answer the Multiple Sclerosis Intimacy and Sexuality Questionaire-19 (MSISQ-19) and to indicate which symptomatic therapy they used to alleviate SD. Symptoms were grouped as severe (they impacted SAS always or almost always), moderate (occasionally), and mild (never or almost never). Primary end point was the prevalence of SD symptoms and their impact on patient SAS.
Of 17,883 surveys mailed, 9861 (55.1%) responses were returned. Of these, 6739 (68.3%) answered the questions on sexuality. Respondents were primarily female (76.7%), Caucasian (87.8%), with average age of 38.4 (±9.6), and time since diagnosis of 13.9 years (±9.3). 38.6% of male subjects and 34.8% of female subjects experienced at least 5 different types of severe symptoms. Also, 14.3% of males and 12.9% of females complained of at least 10 severe symptoms that affected their SAS. The most common severe symptoms were shared by both sexes: too long to achieve orgasm/climax (37.8%), inadequate lubrication/difficult erection (36.5%), less intense or pleasure with orgasm/climax (35.2%), lack of interest or desire (32.1%), problems moving the body (29.1%), less feeling or numbness in genitals (28.8%), feeling less confident (25.5%), and body less attractive (24.8%). The severe symptoms positively correlated with time since diagnosis, Patient Determined Disease Steps Score, bladder disability score, and spasticity score. Few patients with at least one severe symptom used therapies to improve their SD (vibrators 19.1%, phosphodiesterase-5 enzyme inhibitors 14.2%, other medications 0.6%, counseling 4.1%, penile device 1.0%, intracorporeal therapy 0.7%, sex surgery 0.5%, and clitoral device 0.3%).