Relationships and Intimacy

MS and your sexual well being

This page looks at the impact of MS on relationships, intimacy and sexuality. It is for anyone with MS, whether or not you are sexually active or in a relationship, and whether you are heterosexual, lesbian, gay or bisexual.

You and your sexuality

Sexuality and intimate relationships are an important part of life and wellbeing. They can be a great pleasure, but can also cause worry.

Even if you are not in a relationship, you are still a sexual being with needs and desires. Sexuality is an individual process which changes with our lives. The presence of a physical illness like MS can affect how you think of and express yourself sexually.

How you feel about yourself

In spite of the idealised images of men and women we see in the media, we tend to love people for who they are, not what they look like. If you are content within yourself and have a positive outlook, people tend to respond to you in a similar way.

However, living with a condition like MS may sometimes make you feel less attractive or desirable. It can affect your mood, your self-image and how you communicate with a partner, if you have one. Social pressures and other people's preconceptions can also affect how you feel.

The effects of MS

Sexual problems may arise either through the emotional and social consequences of living with MS, as a result of other MS symptoms, or because of changes due to MS in the central nervous system.

If such problems occur, they are not related to how long you have had MS or to your level of disability. Having MS does not mean that you will necessarily experience all, or any, of the problems covered on this page.

However, you may find you need to make some changes to maintain a satisfying and enjoyable sexual life. This may include learning new techniques, using artificial aids or planning sexual activity in a way you have not done before. Although this may take away some spontaneity or feel uncomfortable at first, it can make your sexual life more positive and satisfying.

Are sexual symptoms common?

In the 1997 MS Society symptom management survey, nearly a quarter of people with MS said that sexual difficulties had a major impact on their quality of life.

As with any other MS symptom, problems vary between individuals in type, frequency and degree. Having MS does not necessarily mean that your emotional or sexual life has to stop being fulfilling and fun, but you may need to find more creative ways of managing problems.

The direct effects of MS

MS may directly impair your sexual feelings and/or response as a result of changes caused by myelin damage in the central nervous systems. These are known as primary symptoms.

Loss of libido

Some sexual symptoms caused directly by MS can be treated easily. Others are not so straightforward.

If you are experiencing loss of desire, you may need to relearn how to be intimate and loving with your partner. You may need to learn to 'want' to make love more conciously than you did before, by anticipating the feeling of closeness or pleasure. Professional counselling may help you to find ways of restoring your libido.

If loss of sexual desire is a result of other MS symptoms, such as fatigue or depression, it can often be restored by treating the underlying problem.

Explore alternatives

Some people find satisfaction in giving pleasure to their partner even if their own drive has decreased. Others find it harder to maintain physical communication and affection (caressing, holding hands, etc) when libido decreases.

There are many ways to give and receive pleasure apart from penetrative intercourse. You may find it helps to focus less on barriers to orgasm or intercourse, and instead explore emotionally and physically pleasurable alternatives.

Altered sensation

Exploring alternative touches, positions and techniques with your partner can help if sensation is impaired.

Uncomfortable genital sensations such as burning, pain, or tingling may interfere with sexual enjoyment. Medication (e.g. carbamazepine or phenytoin) may help, but may cause a lessening of libido, and should be monitored with your doctor.

Decreased sensation in the vagina, clitoris, penis or scrotum can sometimes be helped by more vigorous stimulation, whether manual, oral, or by using a vibrator. A strap-on clitoral vibrator can be worn by women or attached to the base of a man's penis during intercourse.

A large selection of sex aids are available through mail order. Some companies are sensitive to the needs of people with disabilities, and can be good sources of information.

Decreased vaginal lubrication

Vaginal dryness can be helped by using a water soluble lubricant, such as K-Y jelly. It will only work if used in sufficient quantities, however, depending on the individual.

Male erectile problems

The most common sexual problems reported by men with MS are in getting or maintaining an erection. Fortunately this is one of the easiest aspects to treat and there are many products available to help.

You should discuss any problems with a health professional such as your GP, MS nurse, urology nurse practitioner or continence advisor.

The impact of other MS symptoms

Other MS symptoms may affect your sexual responses and feelings. Treating the underlying cause or learning to manage it differently can bring an improvement.

Fatigue

Fatigue can sometimes get in the way of sexual desire and your physical ability to initiate or sustain sexual activity.

It may be a good idea to set aside time for sexual activity in the mornings, when you may have more energy. Medication (such as amantadine) may lessen fatigue. Appropriate daily exercise will build your stamina.

Choose sexual activities and positions which need less exertion, such as being on the bottom with your partner on top, or sitting on a chair or recliner.

Sensory distubances

Tremors, pain, tingling, burning, muscle tightness or spasms can interfere with enjoyment. Explore your body and experiment with your partner to find those areas which give you most pleasure and least discomfort.

Taking antispasticity medication (e.g. baclofen) an hour before sexual activity can alleviate spasms. Chemical nerve blocks or surgery are sometimes used for severe spasticity if medication has no effect. Tremors may be managed by finding positions which minimise strain on the relevant part of the body.

Poor concentration

If MS affects your concentration or attention, it may be harder for you to maintain sexual desire or feelings during lovemaking. Your partner may sometimes misinterpret this as a lack of interest, or feel that they are not able to satisfy you.

Understanding and accepting psychological symptoms are vital steps towards managing them. Creating a romantic mood or setting, talking in sexy ways and using erotic touch can all help to prevent the person with MS 'drifting off'. Attention can often be re-engaged by making a joke or by sensual but non-erotic touching.

Bladder or bowel problems

You may feel inhibited, vulnerable or anxious about sex if your MS causes bladder or bowel problems.

Drugs can help to manage incontinence, urgency and frequency, but they may interfere with erectile function or make the vagina dry. Your doctor may be able to change the dose or timing of your medication to allow for this. Using a lubricant such as K-Y jelly will help vaginal dryness. Protective bedding can take away some of the worry about accidents. Men with small amounts of urine leakage can wear condoms with reservoir tips.

Empty your bladder and bowel just before sexual activity. You may find it useful to avoid drinking liquids a few hours beforehand (but don't cut down on your overall daily fluid intake).

Managing catheters

If you use a catheter to drain your bladder, ask a continence advisor for tips on handling or removing it temporarily.

If you have to keep a catheter in place, it can still be moved out of the way and secured with paper tape. Experiment with different sexual positions to find the most comfortable ones.

Partners and relationships

Not everyone has a partner, but we all need loving, caring relationships with other people, whether short or long term. Putting time and effort into looking after relationships is essential.

Communication

Whatever your circumstances, being flexible and able to talk openly about your needs and pleasures is vital to your quality of life. Sharing feelings may take time and effort, but it can ease your fears and make your sexual relationship more enjoyable.

Fear and anxieties

Sometimes you may need encouragement and support just when your partner is least able to give it. There may be times when one or both of you feel confused or rejected, angry or isolated. Ignoring or hiding anxieties will make it harder to work through problems.

Some people prefer to face up to things by talking them through, while others cope by focusing on something else. You will need to learn about and respect each other's approach.

You may need to let go of preconceptions about what lovemaking should be. Who does what, and how, is far less important than mutual enjoyment. Try taking turns to tell each other what is pleasureable, painful, erotic, etc.

Lover or carer

Partners may feel the pressure of taking on extra tasks and responsibilities or think of the person with MS as someone who is 'ill', rather than as a sexual partner.

A partner who is also the main carer may not find it easy to switch between the roles of care-giver and lover. The person with MS may also find it difficult to change from being a 'patient' to a sexual partner.

If you rely on others for help with things like toileting or washing, you can sometimes feel dependent, vulnerable, angry or demoralised. You may feel less of an adult or equal partner, or feel guilty and anxious about being a burden.

Some people may react by withdrawing sexually, others by becoming more insistent or demanding. If you do not share and discuss feelings together, resentment can build up on both sides.

One solution may be for non-family members to do the 'caring' tasks. If this is not possible, it is worth making an effort to seperate care activities from romantic and sexual time together.

Making time for your partner

Sex may be the last thing on anyone's mind if you are fatigued and your partner has been doing the chores. Spend some time together each week in a relaxing atmosphere and put everyday things behind you.

Understanding each other

The safer you feel in a relationship the more your deepest feelings may emerge, and these can include your fears and insecurities.

You can help each other by:

• giving each other undivided attention when it is needed.
• being aware of each other's body language.
• making sure you understand what the other person means.
• asking him/her to clarify anything you don't understand.

Real communication with a partner takes continued attention and effort, but it also offers you the chance to resolve your fears. It is essential for the emotional and sexual health of any relationship.

Getting advice and help

Asking for help is not always easy, but by being open about sexual problems you can also raise awareness of an aspect of MS which does not always receive the attention it deserves.

Support from professionals

If you experience a new problem, you should talk to a health professional who understands MS. This might be your GP, and MS nurse, continence advisor, urology nurse practitioner, neurologist or urologist.

You may have to raise the subject yourself. Doctors may lack training in this area or be afraid of intruding. By talking about sexually-related symptoms you can increase their awareness.

Working together

Ask how your symptoms and medication may be affecting your sexual response. Discuss any changes and ask directly about possible treatments. You could bring a partner or share information later. Your doctor will need to assess whether medication is affecting your sexual function. They may want to talk to you and your partner together to fully understand a problem.

Residential care

It may be harder to sustain a sexual life in care. People may make assumptions about your sexual orientation or needs. If you do consider residential care, ask how privacy, dignity and intimacy are dealt with. Enlisting others to raise awareness can also help in these situations.

Being open

You will cope better with changes if you can talk to people you trust. If you feel inhibited or find it difficult to talk to your partner, a counsellor with a good understanding of MS may be able to help.

© MS Society