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.
How common are sexual difficulties for men and women with MS and what problems occur the most?
Denise says: It's difficult to know exactly how many people with MS experience sexual problems. Research indicates sexual problems may affect 50–90% of men with MS and 40–80% of women. It's important to remember that people in the general population also experience sexual difficulties and that's quite common too: around 43% for men and 31% for women. Nearly three quarters of people who experience sexual difficulties with MS also report relationship difficulties.
The most common problems for men with MS are difficulty achieving or maintaining an erection, sensation difficulties and fatigue. For women, reduced desire for sex, loss of sensation, reduced orgasm, less lubrication and, for some women, loss of orgasm can happen as a result of MS.
How can I stop fatigue ruining mine and my partner's sex life?
Denise says: 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!
MS has left me with some numbness in my genital area making it difficult for me to become aroused and reach orgasm. Do you have any tips to help with this?
Lesley says: Sometimes people can get bogged down worrying about achieving an orgasm. It's rare in general for partners to achieve an orgasm at the same time. Intimacy is just as important; things like touching, holding hands, spending time together.
To help arousal you might plan a date night, setting the scene with candles, soft music, mood lighting, and using fragrance massage oils. There is a technique called body mapping which can help with finding out which parts of the body become more sensitive during intimacy. When you have MS those areas might change because of pain or muscle stiffness so it's good to communicate with your partner and just explore each other's bodies and find out which bits help you get turned on.
There are lots of websites you can look at for sex toys now, and there are also intimate massagers which have been designed specifically to help women who have difficulties with sensation. Masturbation can help because you can feel more in control and decide on the rhythm and speed, and that can help in achieving an orgasm.
Spasticity in both my legs is making sex a real challenge. Is there anything me and my partner can try to make sex a bit easier for us?
Denise says: Firstly, it's important to understand the triggers that can cause your spasticity or spasms to worsen. Those triggers can be things like constipation, bladder problems or an infection. If these things are addressed with your MS nurse and managed appropriately that can be a real help.
It's good to experiment with positions because positioning is key. For some people, the missionary position is a real no-no because it can set off extensor spasms, where the legs go straight out and become locked solid. That can be quite painful for both partners. Some people find spooning better because the legs are flexed towards the body. Pillows under the knees or under the bottom, or positioning a rolled-up towel to support your lower back can be useful too.
If you take medication for your muscle stiffness and spasms, it can help to take some before you have sex. Massage, relaxation techniques and stretching before sex can help too.
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 says: Firstly, if you're experiencing any bladder or bowel problems 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 that 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. If you have a suprapubic catheter fitted, this shouldn't get in the way at all during sex.
If your MS has caused bowel problems, make sure you go to the toilet before you have intercourse. If constipation is an issue, speak to your MS nurse about medications that can make emptying your bowel a little bit easier. 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 says: When you're diagnosed with MS it can really knock your self-esteem and change the way you feel about yourself. Some people feel less confident and start thinking negatively about themselves.
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.
Raising your self-esteem can take time, but there are a range of steps you can take to build up your self-esteem and start thinking more positively about yourself.
You might find it helpful to write down a list of the positive qualities that you like about yourself. You could also think about the good things that family members and friends say about you. Write them all down and keep the list somewhere you can see it.
For more strategies on raising your self-esteem, you can find further information from the NHS and Mind:
Lesley Catterall and Denise Middleton both work for the Central and North West London NHS Foundation Trust. Denise is an occupational therapist with expertise in MS and Lesley is an MS specialist nurse.