MS & Sex

Can someone with MS still actually enjoy a sex life?

Sexuality as it relates to multiple sclerosis tends to be one of the “unspoken topics” – everyone affected by MS experiences sexual problems relating to their MS at some time or another, but very rarely is it talked about. People tend to be uncomfortable bringing up the topic of sex, and reactions when they do are often equally as uncomfortable. It’s almost like sex is a dirty 4 letter word – only it has 3 letters.

Well, let’s get that discomfort out of the way right now, shall we?

There…now it is out in the open. That wasn’t so bad, was it?

Today, there is more and more information available on MS and Sexuality – from the MS Clinics and on the Internet. But.. alot of that information remains dry technical analysis and basic “1,2,3′s” for dealing with problems. I still remember clearly my doctor’s reaction when I bravely brought up the questions about some of the strange symptoms I seemed to be having regarding my sexuality. When I explained my lack of sensation, he quickly stated “Oh, that’s just pereneal numbness. Nothing we can do about it.” Then he quickly jotted something down on my chart and moved on to other issues. In other words – next topic, please…

This reaction proved to be quite typical in the medical community – technical definitions and dry information sheets, but no real understanding nor practical tips. This is where I wanted to help bring about a change in the MS Community regarding how it handles issues of sexuality. Healthy sexuality involves mutual affection, warmth, tenderness,
physical touch, and love – not just intercourse or genital contact! Once diagnosed with MS, many people forget that they enjoy physical closeness for many needs, not only for sexual release and orgasm. As our sexual needs change because of aging, illness, and family demands, it is important to continue meeting needs for touch, affection, and love.

In a study, 63% of people with MS reported that their sexual activity had declined since their diagnosis. Other surveys suggest that as many as 91% of men and 72% of women may be affected by sexual problems. Ignoring these problems can lead to a major loss in quality of life.

Sexual Changes

The following information is abbreviated and referenced from MSIF – Sexual Changes in MS and from the National MS Society – MS and Intimacy.

The ways in which MS can affect sexuality and expressions of intimacy have been divided into 3 categories: primary, secondary,
and tertiary sexual dysfunction.

How MS can affect Sexuality Source: MS Society of Canada

Primary sexual dysfunction   This is defined as a direct result of neurological 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   These are 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   This 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 seriously challenged by changes within a relationship, such as one person becoming the other’s caregiver. Changes in employment status or role performance within the household can lead to emotional adjustments that can temporarily interfere with sexual expression. The strain of coping with MS leads to a serious lack of open communication between a couple about their respective experiences and their changing needs for sexual expression and fulfillment.

In practical terms, this boils down to the following typical symptoms.

In women:

• Reduced sensation in the vaginal/clitoral area, or painfully heightened sensation
• Vaginal dryness
• Trouble achieving orgasm
• Loss of libido

In men:

• Difficulty achieving or maintaining an erection (by far the most common problem)
• Reduced sensation in the penis
• Difficulty achieving orgasm and/or ejaculation
• Loss of libido

In both sexes:

• Spasticity can cause cramping or uncontrollable spasms in the legs, causing them to pull together or making them difficult to separate—either of which can make positioning difficult or uncomfortable.
• Pain can interfere with pleasure.
• Embarrassment can be caused by bowel or bladder incontinence.
• Weakness and fatigue interfere with libido and function.

How does this Affect us Emotionally?

When sexual difficulties start cropping up, you may have a multitude of conflicting thoughts and emotions, such as:

• Denial (I don’t have a problem.)
• Blame (It’s not my problem, it’s his!)
• Fear and uncertainty (Will it work this time?)
• Anger (Leave me alone – I am too tired!)
• Guilt (Can I satisfy her anymore?)
• Confusion (What is happening to me? Don’t I love him anymore?)

This is normal!

Remember, the first rule to any resolution is open communication – so communicate with your partner! A good first step to defining the problem is for you and you partner to go through a self-testing questionnaire together, such as the one provided by the Multiple Sclerosis International Federation.

The Realities of Sex After MS Diagnosis

The reality is that at some point, most people who have been diagnosed with multiple sclerosis will experience some form of sexual difficulty at some point down the road. When is not known, nor is exactly what or how.

One of the most important things to remember is to keep the lines of communication wide open between yourself and your partner.

Communicate! Communicate! Communicate!

The initial stages of any sexual difficulty can be extremely confusing and highly upsetting. A natural reaction for most people is to simply pull into themselves, and avoid the subject. This can take many forms, including:

• pulling away from contact with your partner (generating hurt and confusion in him or her)
• avoiding the bedroom until your partner is asleep (again generating hurt and confusion in your partner)
• “giving in” for the sake of your partner (possibly generating resentment in yourself for their apparent lack of understanding of your situation)

These are just some of the reactions that start the ball rolling for more problems down the road – if communication lines are closed.

Communication is the key to a successful sex life after a diagnosis of MS – it helps each partner deal with any guilt, resentment, or grief. As long as there is open, honest, and non-judgmental communication between partners about any sexual difficulties – then a satisfying sex life is possible.

Now, when I say a satisfying sex life is possible, I mean that it is possible to be satisfied with your sex life, because you and your partner have learned together how to modify your sexuality as a couple. Your sex life will never be exactly the same as it was before MS, but it can be just as good, if not better, when you have open and honest communication with your partner.

The MS Society of Canada has a good publication that you can order called “Sexuality & Multiple Sclerosis“ (by Michael Barret, Ph.D.) or you can view it on-line in PDF
format (Sexuality & Multiple Sclerosis).

Tips & Advice

The best tips and advice I can give are the following:

• Open and honest communication with your partner (this simply cannot be stressed enough)
• Honest self-evaluation of your current body responses (or lack there-of)
• Open-mindedness (be as open as you can with your partner about new possibilities to enhance your mutual satisfaction)
• Be willing to seek outside help
• Attitude is everything – never give up!

Being open-minded, and being open to seeking outside help, can be a true boon to your sex life. This can mean talking to your doctor about medications that may help (such as viagra for men, for example). It can mean talking to a sex therapist, or looking into the possibilities of new devices to help you in your quest for improving and re-defining your sexuality. A really great resource for on-line sex therapy and advice is found at SexualHeath.com .

One of the most fun and interesting ways to enhance your modified sexuality is to explore the great variety of sexual products and resources. My favorite on-line resources for information and sexual products are found at Libida and Sensual Canada. They have an excellent selection of products, and are an excellent resource full of links and information regarding sexuality. For example, if you are experiencing decreased sensation or trouble achieving orgasm, look into the clitoral stimulators and vibrators. Little or no lubrication? Start using a vaginal lube – believe me, it makes a world of difference! If you are having erectile difficulties, check into the variety of products that may help, such as the cock rings.

MS & Sexuality Links

• National MS Society (USA) – Sexuality
• Sexuality and Disability: Resources for MS
• Multiple Sclerosis and Sexuality (PDF from MS Society of Canada)

Good On-line Resources for Sexuality Aids

• Libida Canada
• Sexual Health Network
• Xandria Collection (Ask about their Catalogue for Sex & Disabilities)
• Sensual Canada