Some people find it easy to talk about their feelings. Others may never feel comfortable. You need to decide when you are ready to talk. It’s OK to tell people you’re not ready to talk and that you’d rather wait for another time. Try not to put it off for too long. Talking about your feelings to a good listener is helpful.

Your family and friends may try to support you by putting on a happy face or by being overly caring. They may deny your illness, or play down your anxiety or symptoms. Let your family and friends know when their behaviour upsets you. They will probably appreciate some direction on how to act.

Sometimes talking to family and friends isn’t enough. You may want to talk to other people, such as:

• nurses: support and assist you through all stages of your treatment
• social worker, physiotherapist and occupational therapist: link you to support services and help you to resume normal activities
• psychologist and psychiatrist: talk with you and your family about your worries. They can help you figure out what upsets you and teach you ways to cope with these feelings. Psychiatrists can prescribe drugs if you are depressed
• support group: offers support and information to people with cancer. Tele-counselling refers to support group meetings that take place by telephone
• pastoral care worker: helps you explore spiritual concerns.

You may not want to talk about your fears and concerns with family and friends. This may be because you think you don’t have the words to describe how you feel, or you fear breaking down if you talk. You may also want to avoid being a burden to family and friends or fear appearing as if you are not coping.

Research has found that support helps people adjust to the diagnosis. The longer you avoid communicating, the harder it will be. If you feel your family won’t understand, join a support group or talk to a health professional.

How you might feel after diagnosis

Cancer treatment can change the way you feel about yourself (your self-esteem). You may feel less confident about who you are and what you can do. This is more common if your body has changed physically, but even if it has not.

Dealing with the cancer diagnosis and the treatment can make you feel like you’re on an emotional rollercoaster. You may not be able to imagine yourself being in a sexual situation after what has happened to your body. If you are single, you may feel anxious about initiating a new relationship. You may feel angry if you are now unable to have children.

These feelings are common, and can affect your self-esteem and your attitude towards intimacy. It will help to talk about how you feel with your partner or other women who have had cancer.

Some people find that physical activities – sports, dancing classes, exercise – improve their body image. Creative activities such as painting, playing music and craft can also increase your self-confidence.

Coping with changes in appearance

Changes in your appearance after cancer treatment can affect how you see yourself (body image). Body image may not depend on how you look but how you think you look. A change in body image may not affect your ability to have sex but it may make you feel less sexual.

Tips:

• Give yourself time to adapt to what you’ve been through.
• Draw attention to your good points with clothing, make-up or accessories.
• Consider wearing a scarf or wig if your hair has fallen out from chemotherapy.
• Try to stay active and exercise as regularly as you can.

Impact of diagnosis on family and friends

Cancer is difficult for everyone it affects. Your family needs to adjust to the diagnosis too. They may feel uncomfortable because they don’t know what to say, but feel they should say something. They may be worried about how you will react and wonder what to do if you cry.

How your family communicates now may depend on how they have always communicated. Families who frequently share their feelings may be better able to talk about the disease and the changes it brings. Families in which each member solves problems alone, or one person has played the major role in making decisions, may have more difficulty communicating.

As you express your own feelings, remember that others may need to do the same. They may experience similar fears and anxieties, and need as much information and advice as you do. Family members may feel angry too. They may express their own hurt at your outbursts, at the possibility of losing you, and at their inability to do anything about the disease. They may also fear how the illness will change their lives.

Often, family members are ready to talk at different times. Give them the space to talk when the time feels right.

If your family members have difficulty talking about cancer to one another, it may help if they speak to a counsellor or the hospital social worker. If family members deny the reality of cancer or refuse to discuss it, encourage them to come with you to the doctor or the hospital when you are having treatment. This may help them accept your illness.

Easing the way for friends

Helping friends feel at ease can be difficult. At a time when the focus should be on you, you may resent having to do some groundwork to get the support you need.

Often, friends need direction on how to behave with you. They might not be sure that you want company. They might call to ‘see how things are going’, then add as they hang up the phone, ‘Let me know if there’s anything I can do to help’. Take the opportunity to let them know how they can help. Tell your friends exactly what you need from them – be specific. If you can think of something they can do, you’ll be doing both of you a favour.

Cancer can change friendships. Some friends handle it well; others cut off all contact. Friends stay away for different reasons. They may not be able to cope with their feelings or know how to respond to a change in your appearance. Your friends may still care for you, even if they stay away.

If you think that uneasiness rather than fear is keeping a friend from visiting, call them to help ease the way. Remember that you can’t always deal with all the reasons why people avoid you; some still believe that cancer is contagious.

Sometimes you have to be honest with yourself – are friends staying away, or have you withdrawn from them to avoid talking about your fears and anxieties? You may find that talking about your illness helps you cope with it better.

Going it alone

Some people live alone or have no family. This may make them feel lonely or that they have no one to live for.

If you would like company, support groups provide some comfort or offer the encouragement you need to stay positive.

Impact of diagnosis on partners

What you as a partner can do

Cancer treatment or surgery can change your partner’s body. Areas where touch used to feel good may now be numb or painful. Some of these changes will go away. Some will stay. For now, you can figure out together what kinds of touch feel good, such as holding, hugging and cuddling. Your partner needs to know that you still love her and find her attractive. Remind yourself of her other qualities: sense of humour, intelligence or personality.

Talk to your partner. Ask her to tell you or show you what feels good or what areas are sensitive to touch. You might feel awkward about sexual contact because you think your partner is not ready for sex or that physical contact may hurt her. These feelings may affect your libido or your ability to maintain an erection (impotency). These effects are temporary and will improve with time.

Make dates. Many couples find that it helps to plan special occasions. Some days may end up being better than others for these dates, depending on how your partner feels. So you may need to be OK with last-minute changes.

You don’t have to be fancy. It’s about spending time together. That can mean watching a video, going out to eat, or looking through old photos. It can be whatever you both like to do. You can also plan these dates to include other people, if you miss being around others.

A counsellor can help you find ways to help each other. There are many who deal with intimacy and sexuality issues with cancer patients.

Call the Cancer Council Helpline on 13 11 20 for more information, or talk to your treatment team.

Women in a same-sex relationship

You may feel that your sexuality isn’t mentioned when discussing the effects of treatment on sexuality. Many of the issues are the same for you as for other women. You may also feel distressed by the impact on your body image, sexual functioning and fertility.

The different nature of your sexuality may help you cope with changes in sexual functioning after cancer treatment. Receiving pleasure from different forms of sexual stimulation and not always having to rely on penetrative sex may help you continue your sex life, if penetrative sex is too painful or just not possible for a while.

Tips:

• Try to be open with your doctor about your sexuality. This will help them understand your needs. This will be easier if you find someone you can trust.
• Take your partner along to doctors’ visits. This will show your doctors who’s important to you, and your partner can be included in discussions and treatment plans.
• Talk to someone who has a good understanding of same-sex lifestyles. Call the Cancer Council Helpline on 13 11 20 for suggestions.

What if I don’t have a partner?

Finding a new partner can seem daunting after cancer treatment. You may be worried about how a new partner will react to your cancer, even if your body appears unchanged.

Deciding when to tell a new partner can be difficult. You may want to wait until you’ve been out a few times and feel it could develop into a relationship before sharing the information. It may help to show them any body changes before any sexual activity so that you can both get used to how that makes you feel. Ultimately, you need to rely on your own judgment about what to say and when.

If a new relationship doesn’t work out, don’t automatically blame the cancer. Remember that not every relationship worked before you had cancer. Sharing your concerns with someone who has been in a similar situation can help.

Sexuality, intimacy and cancer

Having cancer doesn’t mean you are no longer a sexual person. However, treatment such as surgery, chemotherapy and radiotherapy can affect your sexuality. This includes your interest in sex, your ability to give or receive sexual pleasure, how you see yourself and how you think others see you. Some of these effects are temporary, whereas others are permanent. All can be managed or controlled.

As individuals, people have different ways of expressing and defining sexuality and intimacy, and they also place their own importance on these needs.

Some people may feel an increased need for sexual and intimate contact for reassurance. Some may be less interested in intimacy and sex, or feel that these things are temporarily less important. Others may feel too tired or sick to want sex, or feel they are less sexually attractive to their partner because of changes that cancer and its treatment have caused to their body.

If you are concerned about changes to your sex life, it is important to talk to your partner. He or she may feel that, if they raise the topic, they might place too great a demand on you or make you feel guilty.

You can also talk to your health-care team about the potential challenges you may face having vulval cancer. Knowing what changes may occur, and addressing them if they affect you personally, will help you overcome or adjust to the changes.

After surgery

Most women feel shocked and upset by the idea of having treatment to one of the most intimate and private parts of their body. You may experience a wide variety of emotions, including anger, fear and resentment, all of which are normal.

When these feelings are combined with the physical effects of treatment, you may find that the closeness of your relationship with your partner is affected. It may also take time to feel interested in, and comfortable during, sexual intimacy.

Sharing your feelings can bring you and your partner closer together. You may also find it reassuring to talk to another woman who has been through the same experience.

Physical changes

Women who have had vulval surgery have different feelings about looking at the vulva afterwards. Some women don’t want to look at the area. Others want a nurse to be with them when they look for the first time. A nurse can explain what has happened to the area and can offer professional support and advice.

Some women prefer to look alone or with a partner, friend or relative. Whoever you choose, make sure it is someone you trust and can talk to openly about your feelings.

If you decide to look at the vulval area, it is natural to feel shocked by the changes. If the labia have been removed, you will be able to see the opening to the vagina much more clearly. If the clitoris has been removed, there will now be an area of flat skin without the usual folds of the vulva.

Taking your time

Although the area of the operation usually heals within about 6 weeks, the emotional effects will probably take much longer to deal with, and require gentleness and sensitivity from yourself and the people close to you.

It may be some months before you begin to enjoy sexual activity again. Don’t be surprised if you feel very unsure about it. Remember that you need to make yourself and your healing a priority. Allow yourself to say no to any kind of sexual contact that does not feel right.

Physical problems

People’s sex lives often change during and after cancer treatment. You may find that your interest in sex is diminished, and you may also experience some physical sexual problems.

Sometimes surgery causes scar tissue to form around the outside of the vagina, narrowing the entrance to it. Radiotherapy can cause scarring and narrowing of the vagina itself. Both situations may produce pain during intercourse, but using plenty of lubricant and trying different sexual positions can help. Water-based and nonperfumed lubricants are best.

Using a vaginal moisturiser 2 or 3 times a week may be beneficial. A hormone cream can also help keep vaginal tissue supple and lubricated. These creams are available on prescription from your doctor.

If you don’t feel like having sex, or you find penetration uncomfortable, let your partner know.

If pain is a problem for you, plan sexual activity for the time of day when your pain is lowest. If you are using pain medication, take it shortly before sex so it will be in full effect during lovemaking. Use positions that put minimal pressure on the painful areas of your body and allow you to control the depth of penetration. Learn relaxation techniques to help stop the muscles tensing up.

If it is still too painful, talk to your doctor. The Cancer Council Helpline (13 11 20) can also let you know where you can get help and support for this problem.

Effect on orgasms

You may worry that, if your clitoris has been removed, you won’t be able to have an orgasm. This is not necessarily the case, but you may need to take time to explore different ways to climax. There are many other parts of your body that, when caressed, can increase sexual excitement and lead to orgasm. The breasts, inner thighs, feet and buttocks are all very sensitive areas of the body.

You and your partner can still be intimate without trying to have intercourse or reaching an orgasm. Sharing your feelings for each other in intimate ways such as cuddling, kissing, stroking and massage can often be as satisfying as full penetration and climax.

Tips:

• Think about pleasurable sexual experiences, watch romantic or erotic DVDs, or read sexy literature to stimulate you.
• Guide your partner’s hands or fingers to areas that arouse you.
• Consider using an electric vibrator to give you extra stimulation to help you reach orgasm.
• Focus on your breathing to help you relax, and focus on the pleasure of the whole experience.
• Tighten and relax your vaginal muscles in time with your breathing during penetration or while your sensitive areas are being stroked.

Your doctor or nurse may be able to discuss this with you. You may also wish to speak to a sex therapist or counsellor experienced in this area.

Regaining sexual confidence

For most women sex is more than arousal, intercourse and orgasms. It involves feelings about intimacy and acceptance, as well as being able to give and receive love.

If we are not comfortable with the way we feel about our bodies, this may affect our confidence and desire for sex.

Some women worry about being rejected by their partner, or any new partner, because of changes to their body, whether these changes are visible or not.

It is sometimes difficult to communicate sexual needs, fears or worries with your partner in an intimate relationship. After treatment to the vulva, you may find it even more difficult, but you may be surprised and encouraged by the amount of tolerance, trust, tenderness and love that exists between you.

However, problems can arise because of misunderstandings, differing expectations, and different ways of adapting to changes to your sex life. If this happens, you may find counselling helpful, either with your partner or on your own. You may be able to work through these challenges towards a new closeness and understanding.