Life after treatment for vulval cancer

You have follow up appointments to check your recovery and sort out any problems. They‘re also your opportunity to raise any concerns you have about your progress.

Your feelings after treatment for vulval cancer

People react very differently to vulval cancer treatment. The vulval and genital areas are private parts of your body and you may find it very difficult to talk about how you are feeling. It can affect your self confidence and you may need time to come to terms with the changes that treatment brings.

Feelings may be mixed with relief that you've had treatment. Your initial feelings of fear, shock or anger should improve, particularly with support from family or friends.

If these negative feelings don't go, you may be becoming depressed. Talk to your doctor or specialist nurse if you are worried about this. Counselling may help or your doctor might suggest a course of anti depressants. This isn't unusual after cancer treatment. It won't be forever and will help you over a difficult period.

It is common for women to feel less feminine after this type of treatment. Contact your specialist nurse or one of the organisations if you feel like this. It may help you to realise that other women who've been through the same thing feel the same way.

Coping with changes to how your vulval area looks

Immediately after surgery, your genital area will be swollen and bruised. This will heal but there will be changes in how your genital area will look. The inner and outer lips of your vagina may have been removed which will make this area look very different. This may come as quite a shock when you first see it.

Radiotherapy to the vulva can also change the way the vulva looks. For example, the skin may look darker.

It can be very hard to accept sudden changes in your body that you are not happy with. It is not unusual for people who have had treatment to their genital area to feel angry, confused and upset.

You may not feel as physically attractive to your partner if you have one. Even though people may not be able to see the changes, you may worry that you do somehow look different.

The important thing to remember is that those closest to you will not view you any differently as a person. They will want to support you as much as they can. Shutting them out will only make you feel more isolated and less able to cope with things.

Who can help?

Different people can help you cope with life after treatment for vulval cancer. They include:

• your treatment team including your doctor and clinical nurse specialist
• people who have had similar experiences
• people close to you
• support organisations
• Cancer Research UK information nurses 

Talking to your doctor and clinical nurse specialist

This is one of the most important things you can do. Talking to your doctor or clinical nurse specialist before your operation can help you deal with things later on.

Ask them exactly how treatment will change how you look. You are likely to be very swollen and sore immediately after your surgery, but this is temporary and not how you will look forever. Do not be afraid to ask your surgeon questions. They will be sensitive to how worried you are about changes in your body and will want to reassure you.

Talking to people who have had similar experiences

This may not help everyone but some people find it very helpful and reassuring to speak with someone else who has had the same treatment as them. Your doctor or clinical nurse specialist may be able to put you in touch with someone who has had a similar experience.

Talking to the people close to you

The best support you are likely to get is from your close family and friends. Some people may choose not to share too much with these people because they do not want to upset them, or feel too shy about their treatment. Often sharing your feelings can bring people together.

If you are having problems with your intimate and sexual relationships because you feel that you are no longer attractive, try letting your partner know how you are feeling. Explaining how you feel can help them understand, and help you.

Vulval cancer organisations and support groups

There are lots of organisations and support groups that can help you cope with vulval cancer and its treatment. 

Cancer Research UK information nurses

Sexual relationships after vulval cancer treatment

Vulval surgery and radiotherapy can affect your physical ability to have sex. It can take several months for the vulval area to heal after treatment and for the sensation in the area to improve. Your emotions may also change your sexual feelings.

Surgery and radiotherapy can also cause scarring. This can cause your vagina to shrink or lose its ability to stretch (elasticity) and be much tighter. You may also have vaginal dryness. Both can cause sex to be uncomfortable or even painful. 

Vaginal dilators

Using vaginal dilators to improve the stretchiness of the vaginal opening can help. 

Dilators are smooth cone shaped objects that you put into your vagina to stretch it. They come in sets of different sizes.

Your doctor or nurse will give you a set and explain how to use them. You use dilators with a water soluble lubricating gel. Starting with a small dilator you gently insert it into the vagina and leave for a few minutes before removing it. You usually do this once or twice a day. When you are comfortable doing this, you can start using larger ones until your vagina is stretched enough for you to have sex comfortably.

Usually, you can use the dilator less after about 3 months, but you may always need to use it from time to time.

You may have slight bleeding or spotting when you start to use your dilator, this is normal. Do not continue if you have heavy bleeding or pain and let your nurse or doctor know.

Using dilators and having sex

You might be able to stop using the dilator if you are having regular sex. But don't worry if you don't feel ready for sex for a while after your treatment. Everyone is different. Some women use dilators as well as having sexual intercourse.

How you may feel about having sex

If you have had your clitoris removed, it will feel different when you have sex. You may find it more difficult to reach a sexual climax (orgasm). 

You may not feel like having sexual intercourse for some time. But you can still enjoy intimacy with touch and talking to your partner. Women who've had this type of treatment tell us that orgasm is possible, even if you've had your clitoris removed, but may take longer.

You may worry about the first time you let your partner see or touch your body again. Some women need time to be alone and come to terms with what has happened. This is very natural, and some women want to build up their courage to face someone else. Others need almost instant comfort and find loving touch will relieve their fear of being rejected.

You may find it difficult to relax during sex. There are books and tapes available that explain relaxation techniques. Your local cancer support group may have these available, or they may have classes at their group. Your specialist nurse or library may have relaxation tapes or books you can borrow.

If you are not in a relationship you may feel worried about starting a new one after your operation. Talk to your gynaecology nurse specialist. You may also find it helpful to get in touch with someone who has been through this type of surgery.

Fertility

Surgery does not affect your ability to become pregnant. But other treatments such as radiotherapy or chemotherapy may affect your fertility. Your doctor can tell you whether the treatment you are having can affect your fertility. 

Swelling in your groin and legs

After surgery, your groin and genital area will be swollen. This should go down within a few weeks. If you have had lymph nodes removed, or have had radiotherapy to your lymph nodes, there is a risk of developing swelling later on. This swelling is called lymphoedema (limf-o-dee-ma).

If you think you are developing lymphoedema, it is important to tell your doctor right away. Your doctor will examine you and then refer you to a lymphoedema specialist. The earlier you get this problem diagnosed, the more likely it is that the lymphoedema specialist will be able to get it under control.