Before an MS award dinner last week, I sat down with nine guys from the Mandell Center for Multiple Sclerosis in Hartford. Mandell deals with urological issues related to MS. This is the only program of its kind in the country. These guys were a support group. Imagine that. Whoever heard of a male support group talking about sex?
What was so interesting was although there are various urological issues associated with multiple sclerosis, there are specific sexual problems that go hand in hand with deeply troubling urological issues. Most men with MS will experience a urological issue, many of them sexual.
We sat in a circle and talked openly, without hesitation or embarrassment. Have you ever talked openly about the need to wear diapers because of incontinence? Dr. Marlene Murphy-Setzko is a urologist specializing in MS. She put the group together and says continence and sexual function define quality of life for her patients. They say self-esteem is a big problem.
"I took 17 patients to a restaurant, many going for the first time. They had never been out because of their embarrassment at incontinence," she said. "There is a lot we can do for these people." Marlene told me phobia of catheters is common and keeps men away from doctors. "Men would rather use crutches, scooters, or canes than have a catheter put in."
Dr. Murphy-Setzko went on to say that incontinence put patients in institutions. Hard to believe in 2014. The more things change, the less they change.
But get these guys together, and they want to talk about their sex lives and sexual dysfunction. They do it with ease. Many women are treated, and men are encouraged to bring partners and spouses. "They need to understand the problems," according to Marlene, "and know it is not their fault." The it can be decreased libido, trouble maintaining erections and achieving orgasm.
Sexual impulses are transmitted through the spinal cord. Lesions can block those signals, too. Medications can help some of these problems. Of course, here is the famous little blue pill. Decreased libido and a numbed genital area probably are out of reach. It is too bad so many of us remain locked in the closet on issues of sex. Patients can be helped, but they have to step out in the light.
These problems in men are too little recognized and under-served.