Sex and Palliative Illness by Douglas Macmillan Hospice

Sex and Palliative Illness

INTRODUCTION An illness may change how couples usually like to have sex and some couples might also put their sexual needs to one side, or stop altogether during the illness. For some of you sex may play an important part of your relationship. There are many methods and techniques available to help you express your love and affection to your partner. This leaflet aims to support the biggest sex organ in men and women—the brain—by providing support and suggestions for questions and concerns.

EFFECTS OF AN ILLNESS ON SEXUALITY An illness may affect a couple’s sexual relationship and sexual satisfaction. An illness or medication may…  reduce sexual desire and/or the ability to have intercourse, or change the intensity of an orgasm or your ability to orgasm  cause fatigue, pain, nausea and reduced organ function, which can limit sexual activity  alter your appearance and bodily function  change the ways you feel about sex  change the role of partners, who become caregivers as well as or instead of lovers 2

BENEFITS OF SEX You may be aware that sex can bring both satisfaction and a sense of release. For both partners coping with palliative illness, a sexual relationship may be a way to feel "like yourself" or it can bring you close to each other after the changes of an illness. Benefits of sex include...  a natural high after orgasm  improved sleep after orgasm  increased relationship satisfaction and stability  symptoms can be eased or your mood lifted after sex  a source of comfort, pleasure and an affirmation of one's self  sharing a sexual experience can help you to feel close to someone you love and care for

TALKING ABOUT SEX WITH YOUR PARTNER Talking or planning with your partner beforehand may help you to return to, or initiate sex. Together you might consider…  Ways to make sexual activity special by making alterations and accommodations for physical needs, for example using pillows or towels to support joints or positioning  Ways to be honest and open with your partner, for example the things you like and do not like and what is helpful for you during sex  Your partner's likes and dislikes  How you might communicate during sexual activity, for example communicating enjoyment or discomfort  Your sexual desires and boundaries, for example domination, role play or reversal  Creative ways to adapt how you had sex before, for example having sex in the shower  If using lubricants, penis rings, a sex wedge, dildos and other toys may enhance sex Use your imagination, be creative and playful: explore each other 4

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PREPARE FOR SEX Some of these suggestions may be useful  Plan sexual activity for the time of day when you notice you have the most energy and for the ill partner, when health problems are least intrusive  Practice positioning before sexual activity and experiment with different sexual positions that minimise weight bearing or tiring movements  Notice ways the body reacts to medication or environment  Give pain medication enough time to be effective before sexual activity  Be sure you are rested and relaxed, for example take a warm bath or an invigorating shower  Attend to and care for sore areas, for example apply medical creams, massage or stretch any achy areas – your partner could do this for you

BEFORE SEX The following points are some things you may wish to consider before having sex;  Support joints and be comfortable, for example ensure correct room temperature  Use sight, sounds and smells to make sexual activity more enjoyable, e.g. incense, scented candles, lower lights, pleasant lubricant  Increase mental arousal, for example play music, look at erotic material, meditate, visualise sexual activity  Increase genital stimulation, for example by masturbating and then transfer to a partner

THE SEXUAL RESPONSE CYCLE The Sexual Response Cycle explains different physical phases of sexual activity and intercourse. The following table outlines features and responses during sexual intercourse and possible differences with an illness. Understanding the Sexual Response Cycle is important, as it helps you to understand the impact that a palliative illness can have on sexual functioning. You may experience one or more of the differences outlined in the table. In all cases, seeking support from a healthcare professional is useful and may help you find an appropriate solution.

Resolution

Orgasm

Plateau

Arousal

Desire

Features of male and female responses Differences with an illness This section outlines the typical sexual responses of men This section outlines how sexual responses may change for and women men and women following an illness For both men and women sexual arousal begins with the presence of different types of sexual stimulation or interactions, for example physical closeness, talking, or non verbal communication, such as a look you give your partner. Partners then become aroused.

Both: There may be a reduced desire for sexual intercourse or intimacy for various reasons, for example your feelings about sex may have changed or your body may have changed. There may be a loss of sensation in, or loss of, erogenous zones, or other physical difficulties. You may no longer desire sex or dislike parts of your body.

During this phase, breathing becomes heavier, your heart rate and blood pressure increase. At this point partners may be touching, having oral sex or intercourse. For women:  Natural vaginal lubrication is produced  The clitoris swells and becomes larger Men:  Lubricating liquid is produced from the penis Penile erection

Both men and women may find reaching arousal difficult, this may be due not feeling any pleasure, or could be due to physical difficulties such as damage to nerve supply. For women:  Vaginal narrowing, dryness, vaginismus, stenosis or fibrosis  Lack of natural lubrication, dryness and discomfort For men:  Decreased testosterone Erectile dysfunction

As sexual activity or intercourse continues, both people hyperventilate and experience muscle spasms and tension. For women:  Peak vaginal lubrication For men:  Peak erection of penis  Testes withdraw into scrotum Orgasm may not occur at the same time for both partners. During orgasm, there is a peak of pleasure and a release of sexual tension, which varies between each person. There are also involuntary muscle spasms. For women:  Contraction of uterus and vagina muscles For men:  Contractions of penis muscles  Ejaculation

Reaching and staying at this stage may be difficult for men and women. For women:  Penetration is extremely painful or impossible For men:  Difficulty maintaining an erection

Reaching orgasm may take a while or you may be unable to reach orgasm, or there may be a change in the intensity of your orgasm. For women:  Delayed orgasm  Vaginal muscles cramp For men:  Erectile dysfunction Loss of semen production

After sex there is usually a sense of well-being, For some, sex is a possibility, but the time following intimacy between partners and tiredness. sex might be problematic. You may experience pain, For men: nausea or fatigue.  Recovery time (the Refractory period) For women: Some women can return to the Orgasm stage and experience many orgasms

Treatments may affect sexual desire or function

Potential remedies This section offers suggestions to help sexual difficulties

 Surgery involving genital organs or structures near them  Mastectomy  Neurological or vascular damage

Partners may;  Talk about sexual needs or desires. Experiment with what feels enjoyable to find alternative sources of physical pleasure, which may increase feelings of sexual desire  Explore feelings about your own body, whether it is how you look, or feel  Talk to your doctor about reconstruction options (breast, vagina, penis) to improve feelings about body Prosthesis (breast, penile)  Radiotherapy to the Both  Use of lubricant may help with dryness pelvis Women: Neurological or  Vaginal dilators for helping with penetration vascular damage  (Topical) oestrogen Men:  Medication such as Viagra, Cialis, Levitra, (beware of contra-indications for drugs such as Viagra –medical advice is always important)  Testosterone therapy  Penile Implant  Vacuum Constriction Devices to improve erections  Chemotherapy

Women:  Local or general estrogens (if not contra-indicated) Men: Erection enhancing medication, injection, or aids such as a pump or constriction ring (see above)

 Hormone therapy

Both: Relaxation techniques to help both partners feel relaxed and comfortable enough to reach orgasm

 General treatment side-effects

Both:  Analgesia (pain relief)  Antiemetic therapy (to deal with nausea)  Energy conserving techniques and rescheduling activities

GUIDE FOR VARIOUS AFFECTED AREAS This guide aims to be inclusive of all couples and all sexual practices. This section focuses on penetrative sex (vaginal or anal). However positions can be adapted for oral sex. The penetrating partner is shown as red, the penetrated partner is blue.

AFFECTED AREAS: STOMACH, BLADDER, BOWEL  Decrease fluid intake two hours before sex  Empty the bladder or bowel before sex and shower if necessary  Sex whilst wearing a catheter is possible – reposition catheter to ensure proper function and secure by taping to leg or penis and covering with a condom, use lubrication  Lying side-to-side is especially effective for an individual wearing a catheter  Positions: the key is to reduce lower abdomen pressure

AFFECTED AREAS: LUNGS, CHEST, BREASTS  Feel rested to help breathing feel comfortable and use your oxygen or inhaler before starting sexual activity  Develop a signal to make your partner aware and ready to pause if you want to cough, take a deep breath or use your oxygen  Support any painful or strained areas  Positions: the key is to keep the chest free

AFFECTED AREAS: PAIN, JOINT PAINS, SPECIFIC PAIN, ACHES, FATIGUE  Support the painful area by experimenting with comfortable positions before sex, for example adapting pillows or a rolled up towel to support the painful area  The partner who has more strength and control may take the top position  Positions: the key is to avoid the painful area and moving excessively

AFFECTED AREAS: MOBILITY  Use a comfortable bed, adapted orthoses, lifts and positioning devices, pillows or rolled up towels to minimise joint pressure or for leg or back support  It can be useful to ask a third party to help with positioning  If you are in a wheelchair, consider a chair with removable arms

AFTER SEX ď&#x201A;ˇ You and your partner could relax and talk about what you enjoyed and what you might change next time ď&#x201A;ˇ You might notice enjoyable combinations of sex aids, for example using a combination of sex toys such as a penis vacuum, penis ring and lubrication or a vibrator and lubrication

OTHER ISSUES There may be various reasons why sexual activities or intercourse are problematic or difficult for you. Therefore, consider speaking to your medical consultant, GP or a healthcare professional as they can be useful for specific advice. Considering alternatives to sex might be a useful way to maintain intimacy and closeness with your partner. Alternative suggestions and details of other leaflets which may be useful are overleaf.

The suggestions in this leaflet are not exhaustive; there will be many more things you can try. All couples and sexual relationships are unique. You are the experts of your own sexual desires. Just relax and find the way together.

Other leaflets include; ď&#x201A;ˇIntimacy and palliative illness Please speak to a member of staff if you would like a copy. This leaflet has been produced by the Psychological Support Service. If you have further questions or require further support, please contact your health care professional or Palliative Care Nurse.

The Douglas Macmillan Hospice Tel: 01782 344300 Douglas Macmillan Hospice, Barlaston Road, Stoke on Trent, ST3 3NZ