MS can change sex and sexual relationships in various ways. This page looks at some of the challenges that might come up, and ways to manage them.
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 understand how MS is affecting both of you. When discussing your relationship with a 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...'. And it could be that other issues in your relationship have been affecting your sex life, not only MS. It’s about being honest about what is and isn’t working, and speaking up about your concerns and needs.
Set aside time. If you're in a relationship, can you set aside time each week to devote to restoring intimacy and talk about your desires and differences? If this is difficult at first, it may help to ‘set the mood’: try massage, watching a romantic film together, or making the environment calming and romantic.
Write down how you feel. Sometimes it’s hard to say things out loud.
Try body mapping. Set aside time and gently touch all parts of your body to identify what results in sensual pleasure, discomfort or sensory change. It can help you can find out what you enjoy and what causes you discomfort. This is important if your MS means you have numbness or parts of your body are ultra-sensitive. If you have a partner, you might then move on to body mapping with them.
Masturbation can help you discover what works for you. Spend time to relax and explore your body. Learn what feels good.
Using sex toys. Find out what works for you by experimentation. There's a huge range of toys available, including easy to hold and hands-free options. The right sex toy might be especially helpful if you have problems reaching, positioning yourself, or using hands and fingers.
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 helps with your very personal care, this might affect the intimate side of your relationship. Could you arrange with social services for paid carers to come and do these sort of things?
Talking to a new or potential partner
When should you tell someone you have MS? Is there a good time to bring it up? And if you do, will they still be interested?
This all will depend on you and what’s happening in your life. For example, how obvious are your symptoms? And how serious are you about this other person? At the end of the day, it’s up to you whether you tell someone and when.
If you decide to tell a new or potential partner, remember:
• You’re the expert on your MS. They might have ideas about MS that don’t fit your experience. So tell them how it does and doesn’t affect you. If you can’t answer all their medical questions, our information and MS helpline can help.
• There’s no ‘right’ time to tell someone. First dates are about getting to know someone, and deciding if you’re interested in a relationship. So the first date may be too soon. If you decide you’re not interested, then you don’t need to share personal information like your MS diagnosis. But what if you are interested? Then letting someone know you have MS doesn’t get easier the longer you leave it.
• There might be things the other person doesn’t want to ask you directly. That doesn’t mean they don’t care or aren’t interested. They might just not want to spend every date asking questions about MS. After all, there’s more to you than that.
• You can never be certain about how someone will react to the news you have MS. You might be surprised by their reaction. And it might be a good surprise, not a bad one.
Remember: you can’t decide for someone else if they want a relationship with you. You can only be yourself. Remind yourself that MS doesn’t define you. It’s just one part of who you are. There are lots of things about you that people might be attracted to. Yes, some people may be put off by MS. But many others won’t be.
Putting your other MS symptoms to bed
If symptoms affect how you feel about sex and intimacy, letting partners know can help avoid misunderstandings.
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.
If you use medication for spasticity, taking it just before you have sex might help. Check first with a doctor before you change when you take any drug.
You might find different positions that call for less strength in particular muscles. And for support you can use something like a rolled up towel or the bed, a chair or other piece of furniture. Other options could be slings, supports and other equipment: search online for ‘sex furniture and disability’.
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?
Have you been prescribed medication like amantadine (Symmetrel) to fight fatigue? Taking it before sex might help (though sleeping afterwards may be harder). Check with your doctor if you plan on changing when you take any drug.
Bladder and bowel problems
Your MS team, urologist or continence nurse can help you find ways to deal with needing to wee, unexpected leaks and how to manage catheters if you use one.
If you’re on medication for a bladder problem, taking it half an hour before sex might help. Check with your doctor before you change the time you take any drug.
Some sexual positions put less stress on your bladder.
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.
MS can also affect your ability to concentrate, including during sex. If you or your partner notice that you’re ‘drifting off’ during sex, it can help both of you to know this isn’t through lack of interest or not being turned on. Being relaxed and free of distractions can help.
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 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.
You might have the option of switching to a DMT that doesn’t involve injections. And if you do get side effects, you might be able to time the doses so they don’t affect sexual activity too much. Check with your MS team before you change the time you take a DMT.
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.
You could mention sexual problems as part of a wider chat about symptoms.
If you find it too embarrassing to talk about an issue, it might help if you write it down and give this to your health care professional.
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 refer to our information 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?'
Counselling - talking therapies
Counselling from specialist sexual and relationship therapists help people adapt to, or communicate about, their difficulties.
Counselling on the NHS is often limited, but it is still worth asking your doctor. Alternatively, the College of Sexual and Relationship Therapists can help you find private accredited therapists in your area.