Sexuality & MS: a guide for womenSection 2: MS and sexual response
- Introduction
- Sexual problems and practical solutions
- Loss of libido (desire)
- Vaginal dryness
- Loss of sensation and difficulty reaching orgasm
- Fatigue
- Hypersensitivity (dysaesthesia)
- Spasticity
- Bladder and bowel problems
- General advice on finding the best sexual position
- Medication and sexual response
Not all women with MS will experience changes to the way in which they respond sexually.
There is no sure way to predict who will experience changes, but studies suggest up to 80% of women with MS report some problems at some point in their lives. Some may be caused by other health related issues not connected to MS.
Sexual problems may be caused directly by MS lesions in the brain and spinal cord or relate to MS symptoms that affect sexual response. Some may arise from the psychological, emotional and cultural consequences of living with MS. Problems can also occur as a side effect of prescribed medications; there are over 100 medications that can affect sexual responses.
Sexual problems can occur at any time during the course of MS and can come and go, may persist and may have been present before diagnosis.
Sexual problems may, or may not, be related to the length of time you have had MS or the physical limitations it brings. However we do know they are more common in those women who have changes in their spinal cord and experience walking and/or bladder difficulties. Nerves that control walking and bladder control are located close to those that link to the sexual organs.
How does MS affect sexual response?
There are three key areas of difficulty in terms of sexual response for women with MS:
- loss of libido (desire)
- vaginal dryness
- loss of sensation and difficulty achieving orgasm
Specific symptoms of MS can also affect the sexual response. These include:
- fatigue
- hypersensitivity
- pain
- spasticity
- bladder and bowel problems
- mental health
The physical process of sexual arousal begins in the nervous system (the brain and spinal cord). The brain processes and relays messages to the sexual organs via the nerve pathways in the spinal cord. Many different areas of the nervous system need to be involved to produce a sexual response.
MS lesions (areas of scarring) tend to form randomly throughout the nervous system and can damage nerve pathways that affect sexual response in a number of different ways. For example, lesions in the spinal cord can reduce sensation in the clitoris and the vagina, while lesions in the brain can affect libido.
Sexual problems and practical solutions
Loss of libido
Loss of desire is a problem for many women - not just those with MS. It is estimated that at any one time, several hundred thousand women in Britain are affected by low levels of desire. MS can affect your libido either directly – as a result of lesions in the brain, for example – or indirectly – for example as a result of anxiety, fatigue, loss of self-esteem or the side effects of medication.
If your desire for sex is diminished or lost you may be reluctant to engage in sexual activity and unlikely to make the first move. However, many women who experience loss of desire are physically capable of becoming aroused and having an orgasm when they do have sex. Like many things in life, sexual activity benefits from effort and commitment even if it seems rather forced or lacking in spontaneity at first. The following suggestions can help:
Make time for foreplay:
sex is so much more enjoyable when you are fully engaged in the activity. The more you focus on your senses, the greater the satisfaction you will experience. This will apply to partners too. Many women can be 'slow to warm up' and expressions of affection and foreplay are very important for creating the right mood. Allowing time for this to be enjoyed can be a rewarding aspect of sexual activity and enough in itself for some women. See Games to play in Section 6 for some fun ideas.I have very little sensation in my genital area and only get aroused if my partner takes time. Sexual intercourse is more pleasurable for my husband. But I still enjoy the intimacy.
Ruth
It was worth the embarrassment of telling my partner what I really enjoyed. Now he really knows what turns me on!"
Mary
Set the scene: consider what will 'turn you on' mentally and relax you physically. Create a warm, sensuous environment by lighting scented candles, playing soothing music and using aromatherapy oils in the bath. Try to make sure you won't be rushed or disturbed.
I allow more time and peaceful privacy to help me and my husband.
Maz
Relax:
stress and tension can have a very negative impact on desire – it is easier said than done, but try to clear your mind of worries and anxieties when you are planning to have sex. Simple measures such as a warm bath or a glass of wine may be enough to help you relax but if stress is an on-going problem, it might be worth investing in a relaxation CD which can teach self-help techniques such as breathing exercises or self-hypnosis.
Indulge your fantasies:
fantasising can be helpful for some women. First, you need to consider what exactly it is that you find stimulating. Is it imagining you are on a deserted beach having sex, is it watching erotic movies, or is it imagining yourself in a 'dangerous' situation such as having illicit sex or having sex with someone you would not normally have sex with? Having a fantasy is not 'dirty' or 'abnormal' - most women have their own personal fantasies. You may want to share them or you may prefer to keep them private. Some people find that certain novels or films can be sexually stimulating. You can either buy or rent these or you may find that one of your friends has something suitable that they could lend to you. See Publications in Section 6 for more suggestions.We share more fantasy as we get older and more comfortable with each other. We have started to enjoy oral sex more now.
Ruth
Get in touch:
touch can be very therapeutic and an effective way to restore or maintain intimacy even when full sexual activity is not possible. But for some women touch is too painful and this is considered later in this book. Massage using fragrant oils on the skin (try almond oil if you have sensitive skin) - you might want to buy a book about massage or borrow one from the library. Touching and stroking each other can bring you closer together and can enhance feelings of tenderness. Gently touch where there is feeling – try stroking behind the ears, massaging the hair and scalp or nibbling the neck.Having my partner massage me gently beforehand helps me get in the mood more, either using a scented or plain oil.
Karen
Explore your body:
body mapping is a simple technique that can help an individual or couple rediscover sexual pleasure. It is a way of exploring your own, or your partner's, body and identifying exactly where you feel pleasant, decreased or altered sensations. Find a comfortable room where you will be undisturbed for 15-20 minutes. Take off your clothes, lie down and systematically touch each other's body from head to toe (or all the places you are able to reach). You can also carry out this mapping on your own; you do not need a partner.Really concentrate on what you feel and where you are being touched. Consider which areas give you sensual pleasure, and those that cause discomfort or sensory change and, if you are with a partner, describe what you are feeling. A leading expert recommends that you 'map' your entire body and not only the areas that are commonly associated with sexual pleasure. You may find you have 'erogenous' zones that you were previously unaware of, such as the back of your neck, your ears or your toes. It is recommended that you do not attempt to reach orgasm for at least ten body mapping sessions, as this will defeat the purpose of the exercise.
Psychological problems:
for some women, feelings of guilt or shame may impact on sexual identity, responses and activities. Some women may not be able to identify what they are feeling and may need support in exploring their thoughts. In these instances psychotherapy or relationship counselling may be beneficial. For further information on how to access services such as these, see Section 6.Vaginal dryness
Some women with MS produce less vaginal lubrication and this can make penetrative sex painful; even touch can be uncomfortable. Dryness can be caused by a number of factors, many of them unrelated to MS, including hormonal changes and certain types of medication.
Vaginal lubricants can be extremely effective at treating dryness and using them may have the additional benefit of increasing sensation in your genital area. It is recommended that you choose a water-based lubricant rather than oil-based products; oil-based products can damage condoms and do not flush out of your body as easily as water-based lubricants and this can increase the risk of an infection. They are available either as liquid or jelly preparations.
Examples of water-based lubricants are KY liquid, Sensilube and Astroglide. Lubricants can be bought from chemists or supermarkets or online.
Top tips:
- when using lubricant, apply it liberally.
- once you have applied the lubricant, you can reinvigorate it with water or saliva.
- try out different types of lubricant to see which works best for you.
Several of the companies listed in Section 6 sell a wide range of lubricants, some of which are specially formulated to produce 'warming' or 'tingling' sensations.
Loss of sensation and difficulty reaching orgasm
Some women with MS experience loss of sensation in their genital area and will require more intense stimulation in order to achieve orgasm.
Thankfully my husband is extremely understanding but I have never told him, even to this day, that I had no sensual feeling from the waist down for 6 months following the first relapse.
Suzanne
There are many misconceptions surrounding orgasm and these can often cause conflict within relationships. A common expectation is that partners will also orgasm and that this will happen at the same time. In fact, this is relatively rare. It is also worth remembering that sex does not have to result in an orgasm every time; sex without an orgasm can still be stimulating, intimate and very pleasurable.
Less than one third of women in the general population achieve orgasm through penetrative sex – the majority require clitoral stimulation. Some women never experience an orgasm and cannot achieve climax despite the nature or skill of sexual activity.
The following may help women with MS:
Use a vibrator:
nowadays people are far more open about using vibrators – they can be purchased on the high street and in some supermarkets. However, if you prefer a more discreet approach, there are plenty of reputable online suppliers that offer a wide range of products (see Section 6).Many women find it much easier to orgasm when they use a vibrator. They can be used on the clitoris, vagina or anal area. Using a vibrator can often compensate for loss of sensation and intensify feelings that are still present. If you have always achieved orgasm through clitoral stimulation you may want to consider a vibrator that does not penetrate vaginally.
You may need to use the vibrator vigorously. A mains operated vibrator is more powerful than a battery-powered vibrator. A vibrator frequency of 80 hertz may be suitable for younger women, women aged 40+ may respond better to 120 and 150 hertz. Vibrators with variable tones and speeds are available.
In order to reach orgasm, I have to use a vibrator. It was actually a partner who suggested that, and I was very embarrassed at first, but it brought an added dimension and creativity to sex! I would urge anyone having difficulty reaching orgasm to invest in a vibrator! Don't be embarrassed about it – they sell zillions of them worldwide, so it's not exactly being weird or subversive any more. Partners would find this very erotic and often want to take charge.
Karen
Oral sex:
not everyone feels comfortable about oral sex, but if you have not explored this before, why not start with kissing in the genital area to see how it feels. More women can achieve orgasm through oral rather than penetrative sex.Fantasise:
use of fantasy may make it easier for you to orgasm. You may prefer to keep these fantasies to yourself, or you may want to share them. The mind is one of the most important sexual organs, especially for women, so make the most of it!Explore pleasure:
every woman needs to be aware of exactly what gives her sexual pleasure and this is particularly important if you have altered sensation in your genital area. If you do not know what turns you on, then it is doubly difficult for partners! Masturbation is an excellent means of self-discovery. It can allow you to establish exactly what gives you the most pleasure and enjoyment. You can either use your fingers (it's a good idea to use some lubricant if you can) or a vibrator. If you have not done this before, you may feel shy, guilty or embarrassed at first so make sure you are not going to be disturbed. Start by exploring your nipples before you move on to your genital area. Find out where you like to be touched most and what intensity of touch gives you the greatest pleasure. Vary the pressure and rhythm of your touch. You might like to try using a variety of textures, such as a piece of silk, a furry fabric or rough gloves. Once you have worked out what works best for you, you can have fun relaying this information to a partner!You may want to consider experimenting with a finger vibrator when exploring your genital area. These are worn on your finger like a ring or thimble and are aimed at intensifying sexual stimulation. They can be obtained from chemists, supermarkets or through the internet (see Section 6).
Body mapping (see Loss of libido in Section 2) can be an excellent way of finding alternatives to penetrative sex.
General tips for achieving orgasm:
- hormonal changes can affect your ability to orgasm: experiment to discover your most orgasmic time of the month.
- try panting for a short while when having sex (not too long as this can make you light headed!).
- exercise pelvic floor muscles to improve decreased vaginal tone – this may enhance orgasmic response.
- raise your pelvis during sex by placing a pillow under your hips – some websites sell specially designed pillows or wedges (see Section 6).
- hang your head over the end of the bed when having sex.
- lie across the bed with your legs hanging over the bed, this allows easier access.
It may sound simple, but now we always make love with the lights on. I can watch my partner as he touches me, watching him makes me feel really sexy and I like this.
Mary
If the suggestions outlined above fail to help, you can obtain lots of other help and practical tips from sexual or relationship counselling. Do not regard this as a failure - it is a positive management strategy that can be really helpful for many couples.
Is there a female equivalent to Viagra?
Research has examined the effect of Viagra and similar drugs on women with MS who have sexual difficulties and it has been found that they do not help. This can probably be explained by the fact that these drugs help achieve an erection but they are not an aphrodisiac – they do not influence a woman's desire, arousal or orgasm. However, research is ongoing to investigate medication as a means of helping minimise a woman's sexual difficulties.
If you are referred to a sex therapist or counsellor they may be able to prescribe treatments or other ways of managing problems that are not routinely available (see Section 5).
Fatigue
Fatigue is one of the most common symptoms of MS and can be the most disabling. Often when you are tired, the last thing you want to do is have sexual intercourse and as a result, you may even shy away from any form of intimacy in case it leads to sex.
If fatigue is a particular problem for you, the following advice may help:
- establish the time of day when you are likely to have most energy (often in the morning).
- experiment with different sexual positions to see if you can find any that require less of your energy. One option to try is 'spooning' when the couple lie side by side with penetration from behind.
- if you are particularly tired, use foreplay or oral sex to achieve orgasm.
- it can be helpful to take a rest before sexual activity and some women like to take a cool, invigorating shower.
- use the 'stop and start' technique: this involves taking a break from sexual activity when you become tired, then starting again when your energy returns. This break may only last for a few minutes but can allow you to recover and can 'tease' your partner and actually add to the sexual excitement.
- remember that a 'quickie' can be great fun and still be sexually satisfying!
On nights when I know I am going to be spending time with my partner, I try to plan my days around this – logistical nightmare sometimes.
Karen
For further information, read the MS Trust booklet Living with Fatigue (see Section 6).
Hypersensitivity (dysaesthesia)
While lack of sensation can be a problem for some women with MS, others are affected by hypersensitivity. This can be an uncomfortable, abnormal sensation, such as pins and needles, burning or crawling feelings, numbness or tightness for which there is no external cause. Some women find that their skin can become so sensitive that even the gentlest touch can be unpleasant. There are a number of medications that might help so talk to your specialist about this.
I suffer from dysaesthesia and I often have to tell my partner that something isn't comfortable – even being hugged can hurt me sometimes. I need to explain that this is normal and to get him used to the idea that what I enjoy sexually changes from day to day.
Esther
The body mapping technique (see Loss of libido in Section 2) can be a good way of discovering areas of the body where you do like to be touched. Explain to your partner what you are experiencing and together you can discover what will work best for you. However, if being touched causes you pain, then body mapping may be too uncomfortable for you. You may have to experiment with this technique to see if it can be of any benefit to you.
Super sensitivity can be a major problem. Small delicate touches can cause pain, which makes you recoil. Trying to put this over to the other person is very difficult. 'It's not you as a person – it's me – but I do still like you – honest!
Michelle
Simply changing positions during sex to avoid areas which are sensitive coming into contact with sheets/skin can help.
Esther
For some, hypersensitivity means that penetrative sex or sexual touch is not an option. Some women find that the following alternatives can provide sexual pleasure:
- talking sexy or phone sex
- watching erotic films
- reading erotic stories
Spasticity
If you are prone to spasticity it can be difficult to find a sexual position that is comfortable. Because of the nature of spasticity, the legs are inclined to clamp together with the minimum of stimulus, which can certainly make sex something of a challenge!
Getting turned on sends me into full body extension, which is an embarrassing reaction to a snog. Having sex is complicated because of my adductor spasms and weakness.
Jan
I find lying on my back clutching a knee with each hand towards my shoulders works. My knees have to be bent right up to break spasticity. This position also means I can have lazy sex when I'm knackered!
Jan
Below are some tips for minimising the effects of spasticity:
- the right position is key. Spastic movements are often triggered by lying flat on your back with your legs stretched out, so try to avoid this position whenever possible.
- experiment with different positions to allow you to achieve penetration. Try standing whilst leaning against furniture, lying on your side or on top of your partner. You will need to find a position that is most comfortable for you and also identify movements that trigger spasms or other unwanted movement of your body so that they can be avoided.
- try using pillows under your knees or your bottom. This can reduce spasm and may help achieve deeper penetration. If you are lying on your back, you can sometimes reduce the risk of spasms by putting a rolled up towel in the small of your back. Specially designed cushions and wedges can be purchased which may help you find the best position (see Section 6).
- ask your GP or MS specialist nurse whether you can increase your anti-spastic medication prior to sexual activity.
- using massage and relaxation techniques prior to intercourse can help relax the spastic movement.
- try exercising your limbs gently prior to having sex. If this is difficult for you, ask your partner to help. You may want to speak to your physiotherapist or MS specialist nurse about 'passive movements'.
- relax and trust your partner; this is essential and can be a major factor in terms of minimising spasms.
Having a couple of glasses of red wine can help calm the twitchiness and spasms, and help relax you too.
Karen
Bladder and bowel problems
Bladder and bowel disturbances can understandably cause great anxiety and can prevent some women from wanting to be sexually intimate. Many women fear they will lose control and be incontinent when they are having sex, they feel that it is not worth taking this risk as the embarrassment would be too great.
It may be helpful to know that lots of women in the general population leak urine when they orgasm - some partners even find it a turn on. It is important to discuss your worries with your partner – talking about your fears is often very therapeutic and can clear up misunderstandings.
I have had two episodes of losing control of my bowels, and the second incident occurred on holiday with my partner. I am now glad that I had no chance to hide what had happened. It made us both sad and worried, but it reassured me that for my partner, such symptoms are not tied up with the way he feels towards me either emotionally or sexually.
Esther
Below are some practical strategies for bladder and bowel problems:
- seek the advice of a continence specialist, who is trained in the management of bladder and bowel problems. They can carry out an assessment and may then be able to suggest helpful management strategies. Your GP or MS specialist nurse can refer you or you may be able to contact the continence advisor directly.
- consider whether you are experiencing repeated urine infections, which can cause incontinence. These are common in women with MS and can be aggravated by sexual activity.
- pass urine just prior to having sex, and also just after to minimise the risk of bladder infections.
- try limiting your fluid intake for a few hours prior to sexual activity, although this is not something you should do on a regular basis. This can reduce the amount of urine produced by your kidneys.
- place protection such as towels on the bed. This doesn't remove the problem of incontinence but may help you relax a little. Perhaps a racy red towel might make the situation sexier!
- self-catheterisation prior to sexual contact can be helpful. If your partner is willing, it can even be incorporated into foreplay.
- if you use an indwelling catheter, experiment with alternative sexual positions such as 'side spooning' to reduce the risk of dislodging it. You can also empty the bag and temporarily clamp off the tube before sexual activity. Taping the drainage tube to your abdomen can help to keep it out of the way. A pair of sexy crotchless pants over the top will help to hide it.
- if you are worried about incontinence of your bowels, a micro enema or anal plug may help; speak to a continence advisor for more information.
Some general advice on finding the best sexual position
For heterosexual couples, the 'missionary' position (man on top) can be difficult for women to achieve, especially those with disabilities. Experimenting with different sexual positions and varying your sexual routine can be invigorating. It's also usually a lot of fun experimenting!
If full intercourse is difficult, be adventurous – there are plenty of ways of achieving pleasure without penetration.
My stamina is a lot less now and I cannot sustain any actions for any length of time as bits of me tire out. I have to change positions a lot (although generally there are not a lot of complaints about this)!
Karen
Sex is harder for me now as I get tired quicker and find a lot of positions impossible. We have had to adapt and experiment with new ideas and positions. Kisses and cuddles have become an important part of our relationship and something I really enjoy.
Julie
Medication and sexual response
Some medications that are prescribed to control MS symptoms can cause sexual problems as a side effect. For example an orgasm requires muscular contractions to take place. Muscle relaxant drugs are commonly used to decrease muscular contractions and so can affect your ability to achieve a pleasurable orgasm. Antidepressants can reduce your libido and delay orgasm. Whilst it may be difficult to change your medication, it is certainly worth discussing the options with your GP or MS specialist nurse if you feel that your sex life is being affected.