Sex and relationship problems
Remember everyone is different. And it’s a myth that the only aim of sex is intercourse and orgasm. There are many other types of sexual activity and lots of other ways of physically showing love, desire and affection.
People with MS and their partners tell us living with the condition can create both physical and emotional barriers, which can put a strain on relationships.
For some couples, worries about MS and uncertainty about the future can cause a breakdown in communication and intimacy. There might be times when one or both of you feel confused or rejected, angry or isolated. There could be a rebalance in the relationship. Sometimes you might need encouragement and support just when your partner is least able to give it.
If you feel like you’re no longer interested in sex, you’re not alone. Lack of desire can be a direct result of MS. But it can also be the result of living with the condition. For example, adjusting to a diagnosis, or to new symptoms, can lead to a period of sadness or grief, which can affect sexual desire.
How you feel about your MS can also affect your libido. If you feel embarrassed about your MS, or because of particular symptoms, or if you feel less attractive because of your MS, this can affect your desire for sex.
Of course, it’s not just having MS that can affect things. Stress, having children, the menopause – these could all have an influence. Sexual desire and activity change throughout most people’s lives, and change with age.
MS can directly cause sexual difficulties. Sexual arousal, response and orgasm require messages to be sent between the brain and sexual organs via the spinal cord. If there is nerve damage in the parts of the brain and spinal cord involved, this can cause problems for both men and women.
MS symptoms, and some of the medications prescribed for them, can sometimes have an indirect impact on sex and intimacy.
If you're single
Even if you are not in a relationship, you are still a sexual being and may have concerns about the influence MS has on the way you express yourself sexually.
Your concerns may relate to the effect of MS symptoms on masturbation, the likelihood of difficulties should you start a new sexual relationship, problems with meeting people and dating, or anger and sadness about the break-up of a previous relationship.
It’s important that we actually think about sex as a whole and not just the physical act of inserting Tab A into Slot B like assembling some piece of Scandinavian furniture. Trevis, chef and MS blogger
Ways to manage
Tips for managing your MS and sex
Communicate – it’s essential to understanding how MS is affecting both of you. When discussing your relationship with your partner, it generally works better if you can avoid accusing, criticising or blaming. Sentences that start with 'I feel...' and 'I would like...' may be more constructive than those that begin 'You don't...'.
Write down how you feel - sometimes it’s hard to say things out loud.
Try body mapping (a simple self-exploration technique in which you set aside time and gently touch all parts of the body to identify what results in sensual pleasure, discomfort or sensory change).
Masturbation can help you discover what works for you.
Using sex toys – find out what works for you by experimentation.
Feeling sexy often relates to looking after yourself and taking care of your body – having a good diet, doing some exercise, enjoying relaxing activities and spending time on your physical appearance. Even simple things, like a new hair cut, can help.
Educate yourself. There are lots of myths and misconceptions about sexuality, sexual difficulties and disability. Learning more about how MS symptoms can affect relationships and sexual function can often make it easier to understand how you feel and help you discuss problems – if you want to – with your partner.
Massage and physical contact – creating a sense of intimacy and physical closeness is important in a relationship, particularly if penetrative sex is no longer possible for you. If you’ve stopped having physical contact, you could start slowly, by holding hands or hugging, perhaps moving on to light massage if you feel comfortable with it.
Changing roles – if your partner is also your main care provider, it can be difficult to switch between the roles of carer or cared for, and lover. Completely separating caring activities from sexual or romantic activities can help. Getting some external support with caring tasks, particularly those of a highly personal nature, can also help.
Putting your other MS symptoms to bed
Pain and spasticity
You might find certain positions are more comfortable than others. Massage can relax the muscles and also help to create intimacy and closeness.
There may be a time of day when your energy levels are higher – like in the morning – when you might prefer to have sex. Find your time of day.
Planning to rest before and after sex might help too. Why not experiment with alternative positions that are less tiring and require less muscle strain?
Bladder and bowel problems
There are ways of managing these symptoms, particularly with the help of urologists and continence nurses.
Changes in mood, memory and depression
If someone is feeling depressed, they may lose interest in sex or they may ‘close off’ from other people around them. These emotional changes can be a reaction to the condition and a symptom of MS
It’s important that these emotional symptoms, like physical symptoms, are properly recognised and treated. If it’s affecting your sex life and your relationship, it can help to talk through your feelings with your partner. This may also bring you closer together – which might help with intimacy.
Side effects of medication
Changes in desire, performance and satisfaction can be a side effect of certain medications, such as some antidepressants. If you think any of your medications might be affecting you sexually, speak to your doctor or MS nurse about how you can manage this.
Some people who inject disease modifying drugs may find the injection sites tender and sensitive to touch. If this is the case, you can ask your partner to avoid those places. You can also ask your MS nurse or the drug manufacturers about injection technique, to help minimise these problems.
Talking to your GP or specialist about sex
It can be hard, and a bit strange, to talk to health care professionals about sexual issues. It’s perfectly normal to feel shy or embarrassed. But it’s worth trying, so they can help you find a solution to any problems.
Most health care professionals should be comfortable discussing how to deal with and treat these sensitive and intimate issues. However, it might be up to you to take the plunge, as some health care professionals can be reluctant to bring up the topic of sexual difficulties with you – they might feel it’s intrusive, insensitive, or even inappropriate. They are likely to be full of information once the subject has been broached, though.
Ask your nurse, your GP, your specialist
There are no ‘rules’ over whose job it is to talk about sexual problems, so you can talk to whoever you feel most comfortable with. If it’s hard to talk to a particular professional you can ask to be referred to someone else. You can use whatever words you feel comfortable using – for example, ‘private parts’, ‘bits’ or ‘down below’.
You might find it helpful to write down the particular issues you’ve been having, or any questions you want to ask. That way, if you do get nervous or flustered at an appointment, you don’t forget what you wanted to say. You can also ask if there any leaflets or other printed materials you can take away with you, so that you don’t have to try to remember everything they are telling you.
You could take our Sex, intimacy and relationships booklet with you and use it to start the conversation. For example, you could say something like, ‘I have read that MS can affect the way I feel about sex. Can we talk about it?'