Symptom Management

The Challenges of Sexuality

By Randall T. Schapiro, M.D., FAAN

Managing multiple sclerosis is about disease management, symptom management and, very importantly, about person management. Many times these overlap significantly. Such is the case when thinking about sexuality and MS. In our society, communicating about sexual dysfunction is often very difficult. It is a topic often not well discussed in the physician’s office or even at home, but is of extreme importance to the lives of those with MS. Communication is the key to tackling the important topic of sexuality.

This article might be considered “X-rated” and is written without inhibition. It may not be appropriate for a young audience.

Multiple sclerosis usually begins in a young person with the average age of onset at 30. In a young person, thoughts tend to lean toward athletics, body image, career, friends and sex. With aging, thoughts may evolve toward retirement and health, but sex remains prominent.

Multiple sclerosis has an effect on all aspects of life, and clearly, it affects sexual function and one’s image of sexuality. Sexuality is an all-encompassing descriptive word that involves aspects of intimacy and sexual function. Understanding intimacy is essential to having a successful long-term sexual relationship. Intimacy includes:

• Sex – the act
• Love – emotional feelings
• Security – caring and being cared for
• Sensuality – warm and sexy
• Relating – at all levels
• Intercourse
• Empathy – understanding
• Protecting
• Conversation
• Touching
• Looking
• Honesty
• Body language
• To want
• To understand
• Commitment
• To accept

These important topics need to be discussed completely between partners. These topics and others may indicate feelings of rejection, loss of emotional control, fear of incontinence, and feelings of shame and vulnerability.

Sexual dysfunction is reported in a significant majority of men with MS and in about half the women as well. The sexual response begins with arousal:

• Increased blood flow to the sexual organs
• Erection of cavernous (spongy) tissue of the penis and clitoris
• Release of nitric oxide in the region
• Lubrication in women (as erection in men)

Many factors may influence arousal including:

• Mood alterations
• Lack of imagery
• Social contexts
• Religious/spiritual/philosophical
• Neurological problems

Beyond arousal, there are many factors influencing sexual function:

• Dysfunction fluctuates with disease activity
• Reduced libido (sexual desire)
• Reduced sensory responsiveness
• Pain
Bladder and bowel dysfunction
Spasticity and muscle spasms
• Drugs
• Relationship discord
• Physician neglect – code of silence
• Misconceptions on self-stimulation
• Alteration in body image

The nondisabled partner may often have feelings including:

• Resentment
• Guilt
• Despair
• Loneliness
• Shame
• Misconceptions
• Conflicted feelings – Dual role as caretaker and sexual partner

All of these psychological factors need to be addressed before looking at physical management of sexual dysfunction to have a successful, pleasing, and long-term sexual relationship. Only then can the physical issues be addressed successfully. It is obvious to most that men and women are different and management strategies are different as well.

In males, the major issue may be erectile dysfunction. Management of erectile dysfunction has evolved over time. Two decades ago, there was little to be done, but surgeons were able to surgically implant penile prostheses. They began as rigid rods placed in the penis and evolved to inflatable balloons which gave very realistic erections on demand. This procedure is not common anymore, as medications were discovered that can produce a very workable erection. These began as injections and evolved to pills such as Viagra®, Levitra®, and Cialis®.

In females, a major issue may be decreased sensation with numbness and loss of feeling. Vibrators have become more commonly available to provide increased stimulation without a lot of energy expenditure. Lack of lubrication is another common complaint, and a number of water-soluble lubricants have been developed to treat the problem. There are a number of devices that aid in stimulation and increase blood flow in the female genital area, such as the Eros device that creates a vacuum that pulls blood into the clitoris as it stimulates with vibration. For decades, some have suggested that a frozen bag of peas (left in the bag) when rubbed gently in the clitoral region will decrease pain and increase sexual sensation at almost no cost.

Sexual positioning to allow the most comfort and function is essential and requires experimentation and potentially some specific coaching. Bladder management, fatigue management, and sometimes spasticity management may also be important.

All of the above are really important issues in sexual functioning but, again, the most important issue remains communication. The communication must not only be between partners, but also should be open with the healthcare community. This sounds so simple but, in practice, seems to be very difficult. Sexual dysfunction issues, while common, are not that often discussed. This needs to change for success to occur. Partners have to be kindly honest with themselves and their partner. If approached honestly and realistically, success is likely to occur and couples will have fun along the journey.
Randall T. Schapiro, M.D., FAAN, is President of The Schapiro MS Advisory Group, and clinical professor of neurology (retired) at the University of Minnesota.