Published in InterAction 73, Autumn 2010
We thought that we handled last year’s sex and M.E. article sensitively – but apparently we didn’t go far enough!
“I was so pleased to see that someone was finally addressing the important issue of sex in the autumn edition (InterAction 69, p 24),” said one reader.
“But what about some recognition of the physical constraints? What about intense hip pain, acute skin sensitivity so that having any part of the body stroked can be painful, pain in arms that won’t support your weight, pain in hands and arms when performing repetitive motions to provide pleasure to one’s partner, not to mention muscle spasms in very awkward places!
“If only the writer had included more acknowledgement of just how darned difficult it can be on a physical level, the article could have been shown to much-loved partners to help them to understand that they are in no way rejects if sexual pleasure is a less frequent occurrence than they would like.”
Warning: this article contains explicit sexual language.
M.E. affects our bodies
The problem is that not much is known or written about sex and M.E.
Dr Libby Nugent wrote in our last feature: “As CFS/M.E. affects our bodies, relationships and sometimes the way we feel about ourselves, it may also affect our intimate relationships. There is not much literature about sex and CFS/M.E. and as such no explicit links between the two.
“The lived experience of CFS/M.E. is that of fatigue, pain, sleep disruption, ‘brain fog’… all of which one would anticipate might impact on physical strength, stamina, ‘libido’ or how interested in sex we may feel.”
So how do people with other debilitating illnesses deal with these problems?
Arthritis Care recommends various positions for people suffering from joint pain in their booklet Relationships, intimacy and arthritis, including spooning and crossways.
Spooning is a very gentle position, where the man lies behind the woman on his side and enters her from this position, making him ideally placed to give clitoral stimulation during sex.
In the crossways position, the man lies on his side and the woman lies crosswise against him, her bottom touching his lower thigh, her vagina meeting his penis side on. Her legs can bend over his body, resting behind his bottom, or can be supported by a cushion to keep them straight. One or both partners will need to roll forward and back during sex and some amount of flexibility is needed in the woman’s hips.
Positions that involve arching the back, straightening the legs or twisting the spine are unrealistic if you suffer from painful joints and limbs. Instead, try side-lying or sitting positions, lying on the back with knees bent, or positions where the back is supported. Using pillows and cushions to lift and support the body can help.
Pain Concern publishes an information leaflet on sex and chronic pain that people with M.E. may find helpful. It’s free to download from their website, or can be posted out for a small donation.
The charity also sells The illustrated guide to better sex for people with chronic pain by Robert W Rothrock and Gabriella D’Amore for £12.90.
Outsiders, a charity and self-help group, offers a refreshingly frank forum for discussing sex and disability. It has a wealth of advice on its website and runs a sex and disability helpline (see overleaf).
The MS Society recommends trying body mapping as a way of helping you feel more aware of your body and to work out what feels good. Body mapping with your partner can also increase intimacy.
On its website, the charity says: “Body mapping is 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. Allow approximately 15 to 20 minutes each time you do this, and vary the rate, rhythm and pressure of your touch. Ensure you ‘map’ your entire body, not just the areas that are commonly associated with sexual pleasure. Do not attempt to reach orgasm for at least the first 10 sessions as this will defeat the purpose of the exercise.
“Knowledge gained from body mapping can help you find out what is enjoyable and what causes you discomfort.
“If you are in a relationship, you may find it helpful and enjoyable to then move on to body mapping with your partner. This can enhance sharing, listening, and overall sensual pleasure, as well as helping to deepen intimate and sexual experiences.”
Sex toys may help when you have limited energy. You can buy them in sex shops or online. Remember, though, that people with multiple chemical sensitivities may be allergic to materials used to make some sex toys, particularly latex. Silicone and acrylic can be suitable alternatives.
A water-based lubricant can also make sex easier and more comfortable. Lubricants are not expensive and you can buy them in chemists, supermarkets, sex-shops or online.
Spokz is a specialist disability retailer that offers a range of sex aids from button-free vibrators and wedge shaped cushions to a specially designed chair.
Common sexual problems
Research suggests that sexual dysfunction is common in people of all ages. About 40% of women and about 30% of men report some degree of difficulty.
With or without M.E., you or your partner might experience lack of desire, arousal disorders, delayed or premature orgasm or pain during intercourse.
Dr Nugent, who works at Barts Hospital, London, says: “It is important to remember that there is not only a wide range in severity of these symptoms, but that also for each individual their response to these problems will vary. For some it might be experienced as mildly bothersome, for others extremely distressing.”
Treatment strategies for men may include medications such as Viagra or Levitra, which can help improve sexual function in men by increasing blood flow to the penis, testosterone replacement therapy or mechanical aids such as vacuum devices and penile implants which may help men with erectile dysfunction.
For women experiencing difficulties with painful vaginal tightness (vaginismus), the use of dilators may be of benefit. Women who suffer from vaginal dryness may also be recommended to use lubricants during intercourse.
One reader told us: “My M.E. comes with a range of problems on both skin and mucous membranes. A few years ago that also spread to the vagina, making it feel inflamed and sore, and so preventing any sex that involves penetration.
“A test for Candida infection was negative. I was (later) referred to a gynaecologist at the local Well Woman Clinic. She was very helpful, and had a whole load of ideas to try: pelvic exercises, aqueous cream to keep the skin in good condition, Amitriptyline tablets in case the pain was located in the nerve ends, corticosteroid cream against inflammations, oestrogen cream and Lidocaine, an anaesthetic ointment for short term treatment against pain.
“What did work very well, although only as a symptom treatment, is the 5% Lidocaine ointment. It needs to be applied shortly before sex, and offers a rather short window of opportunity, but it does take away the pain of penetration, making sex possible again for the first time in years.”
Intimacy = sharing
Whatever the physical limitations of your M.E., love and trust are still yours to share with your partner, as are the fantasies which arouse you.
American website Cure Autoimmunity includes an article on intimacy and sexuality issues in women with multiple sclerosis, which advises them to be open to fantasy.
The author, Michelle, makes another important point. “Intimacy, she says, “is not equal to sex. Intimacy is a part of closeness. It’s about relationships, commitment. It’s about touching and feeling… sharing what feels good, sharingfeelings and fears.
“You know,” she continues, “there is a lot to be said for cuddling and foreplay and kissing and those loving gestures that led us to the intimate relationship in the beginning. That’s important, too.”
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