Research suggests that sexual problems affect more than half of people with MS, but starting a conversation about them with a health professional can often feel daunting. Lesley Catterall and Denise Middleton, two MS specialists with an interest in the sexual problems associated with MS, answered your questions
Why do people with MS experience sexual difficulties and how common are they?
Denise: People with MS experience sexual difficulties for a combination of reasons. We classify these as either primary, secondary or tertiary. The primary causes are a direct result of the MS, such as lesions in the brain and the spinal cord. Lesions in some areas of the brain (such as the frontal and temporal lobes) can affect people’s sexual response and intimate feelings. Secondary causes are non-sexual MS symptoms that impact on sexual response and sexual activity, for example spasticity, pain and fatigue. Tertiary causes are a result of emotional, psychological, social and environmental issues. It’s the combination of these things that make it quite complicated when looking at the definitive cause of sexual problems in a person with MS. It’s not just one cause; there’s lots of things that interplay together.
It’s difficult to know exactly how many people with MS experiences sexual difficulties. Research suggests that figures range between about 50–90% for men and 40–80% for women. About 71% of people with MS that experience sexual difficulties also report relationship difficulties. The most common problems for men with MS are erectile difficulties, sensation difficulties and fatigue. For women, decreased libido, genital sensory changes, reduced orgasm, reduced lubrication and, for some women, loss of orgasm are the most common. It’s important to remember that people in the general population also experience sexual difficulties and that’s quite common too: 43% for men and 31% for women.
I’ve been experiencing some bladder and bowel problems because of my MS and I’m really anxious about losing control when being intimate with my partner. How can I stop these symptoms getting in the way of our sex life?
Lesley: Firstly, if you’re experiencing any bladder or bowel difficulties it’s always worth mentioning it to your MS nurse so you can be referred on to specialist continence services. If you’re particularly worried it’s going to interfere with your sex life, try not to be embarrassed and share your concerns openly with your partner. When you experience MS symptoms like this, a little bit more planning is required before you engage in sexual activity.
With bladder problems, there are a few things you can try to help you feel more confident. Emptying your bladder before having sex may reduce some of your anxiety about losing control. If you’re really worried you’re going to have an accident you could always put a black or red towel down just so it’s a bit more discrete. Similarly, if you self-catheterise perhaps plan to empty your bladder before you become intimate with your partner. Indwelling catheters shouldn’t inhibit you from being able to have a healthy sex life. Men with indwelling catheters can use a condom so it doesn’t get in the way during sex and women can discretely tape it to one side. Suprapubic catheters are good for allowing full sexual activity to occur.
If your MS has caused bowel problems, make sure you go to the toilet before you have intercourse. You could use suppositories or an enema to help the process if constipation is an issue. If you’re worried about your bowels emptying unexpectedly, there are things called anal plugs that are discreet and can be inserted into your rectum to prevent any accidents happening.
I’m single and feel as though no one will be attracted to me now that I have MS. How can I build up my self-esteem so I have the confidence to start dating again?
Lesley: When you’re diagnosed with MS it can really knock your self-esteem and confidence. The important thing to remember is that even though you’ve been diagnosed with MS, it doesn’t change who you are as a person and you’ve still got lots of positive qualities. You might find it helpful to write these qualities down to try and reinforce them. You could also ask your friends and family whether they could list your positive qualities and then you could reread those to help build your self-esteem.
It’s also important to focus on the things you enjoy and maybe even try something new, like joining a new club. Sometimes when you’re feeling a little bit low or when your self-esteem and confidence have been knocked, you might become more withdrawn and not want to go out as much. Try not to let that happen. Go out, meet people and enjoy the things that you always did enjoy doing. Practise smiling and engaging with people and hopefully your confidence will be restored.
How can I stop fatigue ruining mine and my partner’s sex life?
Denise: Fatigue is a hidden symptom which is reported by up to 97% of people with MS. 60% of people report it as their worst symptom so it can have a major impact on people’s quality of life generally but also on their relationships and certainly on their sex life. It’s important to discuss fatigue with your MS nurse. They may run a fatigue management course or be able to refer you to an occupational therapist so you can learn how to manage your fatigue in everyday life.
If fatigue is affecting your intimate relationships, there are three key areas you can work on: pacing, rest and activity. It’s important to look at what you’re doing during the day, and maybe what you’ve been doing the previous day, if you’re thinking of planning a date night. By pacing yourself throughout the day and building in rest periods, you’ll have more energy to use on the things you really enjoy rather than wasting it on unimportant things like doing the washing or the ironing. Having sex is much more important than that! Here are some other things to consider:
- Timing – pick a time of day when you’re most awake.
- Environment – choose a setting that makes you feel relaxed and comfortable. Make sure the room isn’t too hot.
- Positions – think about finding positions that use the least energy, such as spooning. You could also try the stop-start method to save some energy or maybe a “quickie” if that works for you!
- Body temperature – if your core body temperature increases by even half a degree when you have MS, you may feel weaker and more fatigued so it’s important to try and stay cool. You could have a cold shower beforehand to reduce your body temperature. It can be invigorating!
How can I bring up the subject of sexual problems with my MS nurse?
Lesley: Try not to be embarrassed about speaking to your MS nurse about sexual difficulties – they’re just as important to mention as any other MS symptoms you experience. As MS nurses, we’re used to discussing sexual difficulties with our patients and it may well be that your MS nurse will ask you directly about them during your appointment. If they don’t, you could take a list with you of the problems you’re experiencing and include sexual difficulties on that list. You could open the conversation by saying: “I’ve been experiencing some sexual difficulties, is this common for people with MS?” Opening up the conversation and talking about sex in this way can help alleviate some of the anxieties caused by sexual problems. I think the key is not to be embarrassed about bringing up the subject and to recognise that sex is important.
About Denise and Lesley
Lesley Catterall and Denise Middleton both work for the Central and North West London NHS Foundation Trust. Denise is an MS clinical specialist in Milton Keynes and is an occupational therapist by profession. She’s been supporting people with MS for 18 years. Lesley is an MS specialist nurse covering Milton Keynes and has worked in this role for just over six years.