Sexuality & kidney disease

Many people with renal failure experience changes and difficulties in their emotional and sexual lives. People with kidney disease are not unique in this. Living with dialysis or having a transplant adds complexities to life that may cause problems for both themselves and a partner. Whatever their nature, be they physical changes in body function or adjustments in lifestyle to adapt to kidney disease, for each individual the effect of any change is different. For some the changes do not cause a problem, for others, they may create severe difficulties in the way they see themselves and in their relationships with their partner or with other people close to them.

This leaflet is about the kinds of sexual and emotional difficulties people experience and the sort of help that is available. Whatever problems you may be experiencing, there will always be someone on your renal unit who will be either willing to listen and discuss these with you or knows somebody who can. Sometimes, the reassurance gained by talking about it may be all that is required.

The demands of dialysis

· The effect of stress

The demands of a life on dialysis may be stressful. Regular dialysis, taking tablets and keeping to a diet and fluid restriction, can cause people to feel anxious and depressed. Equally, the impact that dialysis can have on work, income and plans that have been made for life ahead, can lead to emotional difficulties that affect not just the person on dialysis but their partner and family also. Some people have emotions that develop as a result of losing their old way of life and self, suffering a sort of grief. This can be expressed by a variety of emotional states. If you feel this way it is important to take the opportunity to talk to somebody. Your nurse or doctor can help you to get in touch with somebody who is qualified to help with these kinds of difficulties.

One thing that some people on dialysis experience is moodiness. This can be the consequence of the dialysis and the drugs used in treating kidney failure. If you do get moody, it is important that your partner understands that it is not them but the way you feel that causes your mood swings.

· Changes in sexual function

There are physical difficulties relating to sex that people experience on dialysis which may affect their relationships.

¨ People often report a lack of interest in sex. Men may not be able to have or sustain an erection or reach orgasm. Women may find it difficult to become sexually aroused and reach orgasm. Many people feel tired and lethargic from the process of the dialysis. One major cause of this is anaemia, a lack of red blood cells in the blood stream that carries oxygen around the body. You may already be taking EPO and iron to combat this. But tiredness can also be caused by the dialysis itself.

It can take a little while to adjust to dialysis and some people then find that they recover their sex drive and have more energy.

¨ If you are having difficulty achieving or sustaining an erection, it may be appropriate to refer you, for specialist help, to an erectile dysfunction clinic. It may not be always be appropriate for renal patients to be prescribed Viagra because of side-effects and interactions with other drugs. There are other treatments available for impotency in men including the vacuum pump, GTN patches and injections. Some of these are quite successful.

¨ Drugs for treating high blood pressure can reduce sexual interest and, if you are a man, affect your ability to have an erection. Changing to another type of drug may help and your doctor will be happy to talk about this kind of problem.

Whatever the sexual difficulty you may be having, it is a good idea to check with your doctor to see if there is a medical cause.

· Peritoneal dialysis (PD)

There is some medical evidence that starting treatment with peritoneal dialysis may be better in terms of health and quality of life. People on PD, however, are still at risk of developing emotional and sexual difficulties which can affect their relationships. These difficulties do not necessarily have the same physical causes as those reported by haemodialysis patients. For instance, people on PD do not have the same degree of anaemia as people on haemodialysis. However, PD patients have to cope with a catheter in their abdomen. This can get in the way during lovemaking and can cause either partner to be concerned about the harm that might be suffered by the person with the catheter or damage to the tube itself as a result of love making. In practice, it is unlikely that any serious harm or damage will occur.

It is important to talk together about these sorts of worries, to find answers together that will avoid upset on either part and perhaps experiment during love making with different positions that suit you both.

If either partner is finding sex to be unpleasurable there is plenty that can be done to sustain a close relationship. The natural tenderness that partners show through touch and caress are invaluable ways of showing how you feel toward one another. Such expressions of closeness can provide their own satisfaction and are a larger part of a caring relationship, perhaps more vital than achieving an orgasm. Intercourse is not the only way of enjoying a sensual relationship.

Your changing self

Individuals on dialysis, in addition to experiencing great changes to their lifestyle, will also experience changes in the appearance of their body. Loss of weight, scars and having a fistula or a catheter for dialysis access, may make some people feel less attractive. Not being able to pass water can make some men feel less masculine. People may also be affected by changes in their complexion, which can become pale and sallow, and notice changes in the way their breath smells. These changes can affect both the way you feel about yourself and, as a consequence the way you act toward your partner.

PD patients can be affected by the presence of the catheter or by weight gain (consequence of absorbing sugar from the dialysis fluid).

Experiencing any of these changes may prove difficult to accept. Try to remember that any mark or blemish we have concerns us far more than it will those who love us. Be positive about your appearance and look after yourself in any way that you can.

Feeling frightened

Being unwell and living with the treatment for kidney failure can be frightening. Hospital admission, tests, minor operations and the worries caused by the uncertainty of these things can cause upset. It is important to take the time to discuss these concerns with your partner. Some people find that knowing more about their condition and treatment by reading and asking questions allows them to feel more in control. Try to bring your concerns and fears to the nurse or doctor who cares for you.

Fertility and having children on dialysis

Many women on dialysis find that menstruation is either irregular or stops altogether. However ovulation may continue. For those who are irregular or have ceased their periods altogether, the opportunity to conceive a child remains, although it is an uncommon occurrence. The chances of any pregnancy reaching full term with a normal size baby are low. There is a high level of spontaneous abortion. Pregnancy also carries risks to the mother. Together, these things mean that women on dialysis are normally recommended to use a method of birth control. You can get advice on contraception from your doctor.

Men on haemodialysis may not be able to achieve an erection or reach orgasm and their sperm count will be lower. For men on PD where there are fewer physical causes of sexual difficulties, fertility is higher and the likelihood of conception greater. Contraceptive care and advice regarding conception is also available to men and their partners from the doctors on the renal unit.

Having a baby whilst living with dialysis is something that has to be thought through carefully whether you are a man or a woman on dialysis or PD. The pros and cons need to be discussed with your doctor. If you do not wish to have a baby, you should seek advice on contraception.

Having children after transplant

If you have a transplant the opportunities for having a baby are greatly increased. For both men and women fertility will usually return to normal once their health has stabilised. Many people postpone pregnancy until after they have had a transplant. If, on the other hand, you do not wish to start a family or have any more children, it is essential that you discuss contraception with your doctor or nurse to find the most suitable form for you.

Pregnancy is not recommended until you are stable on your medication after transplant, usually about a year after the transplant itself. It is very important that you discuss the possibility of pregnancy with your doctor or nurse before conception so that you can get the help and support you will need. For instance, it may be necessary to change a drug for blood pressure before conception to prevent a risk to the baby. You can read more about pregnancy after transplant in the leaflet in this library on ‘Successful Pregnancy after Transplant’.

Talking about problems – looking ahead

People with kidney disease can feel tired, worried, anxious, frightened and worried about themselves and how they look. Any of these things can reduce the energy you have available to display and demonstrate your affection to your partner. This can affect your relationship more than any loss of sexual contact. It can also mean that you have little energy to communicate how you feel about other things.

Talking about problems, sharing anxieties and fears will give you the opportunity to get help and to work through them. It is important to deal with emotions even about those things that may seem morbid, such as dying. Many people find that they actually feel better once they have done something, for example, ensuring that their affairs are in order in case of their death because it has allowed them to be positive and take some control back into their lives. It may be useful to set goals, no matter how small, in order to start to look to the future.

If you feel you need to talk to somebody, in confidence, about how you are coping your nurse or doctor are your first point of contact, but, if appropriate, they can also put you in touch with the clinical psychology service. You can read about the role of the clinical psychologist elsewhere within the library. For certain difficulties or concerns the social worker may also be able to provide appropriate assistance or a confidential listening ear.

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