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Life after vulval cancer surgery

Women discussing vulval cancer

This page tells you a bit about how things will be when you've had surgery to your vulva. You can find information about

 

A quick guide to what's on this page

Life after vulval cancer surgery

It is not unusual to feel very angry and upset for some time after surgery to your genital area. These are very private parts of your body and you may find it very difficult to talk to others about how you are feeling. Many women need time to come to terms with the changes surgery may bring. In time, your initial feelings of fear, shock, or anger will almost certainly improve, particularly if you have 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.

Getting help and support

Not everyone feels comfortable asking for outside help and support, but many people find it very useful. There are organisations and support groups that help people who have been through vulval surgery.

Sex and sexuality

Vulval surgery will affect your physical ability to have sex. And your emotions may change your sexual feelings for a while. One recovered patient said to us that it was certainly possible to have a very satisfying sex life after radical vulvectomy, but not until you've accepted the new you.

Swelling in your groin or legs

The swelling from your operation should go down within a few weeks. If you have had surgery or radiotherapy on your lymph nodes, there is a risk of developing swelling later. This is called lymphoedema. If you think you are developing swelling, it is very important to tell your specialist right away.

 

CR PDF Icon You can view and print the quick guides for all the pages in the Living with vulval cancer section.

 

 

Your feelings after vulval surgery

As with most things in life, people react very differently to vulval cancer surgery. Some people manage. But others may feel very upset afterwards, particularly if they have had a big operation on the vulval and genital area. These are very private parts of your body and you may find it very difficult to talk to others about how you are feeling. Your vulva may be very important to your image of yourself as a woman, and your self confidence may be affected. Many women need time to come to terms with the changes surgery may bring.

The first months may be very upsetting. Many women have conflicting feelings, including

  • Grief
  • Fear
  • Shock
  • Anger and resentment

These feelings may be mixed with relief that your doctor has found the cancer and you've had treatment. In time, your initial feelings of fear, shock, or anger will almost certainly improve, particularly if you have 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. They may recommend some counselling. This will help you to sort out your feelings and get them into perspective. Or your doctor might suggest a course of anti depressants. This isn't unusual after cancer treatment. It won't be for ever and will help you over a difficult period.

It is common for women to feel less feminine while they come to terms with this type of treatment. Some have feelings so strong that they describe them as feeling assaulted after their operation. Do contact one of the self help organisations if you feel like this. It may really help you to realise that other women who've been through the same thing feel the same way. And it will get better in time.

There is a section called your feelings. It describes the different emotions women may have, and how friends, family and others can help.

 

How you may look after surgery

Immediately after your surgery, your genital area will be very swollen and bruised. This will heal but depending on which type of operation you had, there will be changes in how your genital area looks. 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.

Women find different ways of dealing with the changes to their bodies. How you look is an important part of your self esteem. 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 surgery to their genital area to feel very angry, confused and upset for some time after their surgery.

You may think that you are no longer as physically attractive to your partner. Going back to work and meeting new people can all be more of a struggle if you are trying to cope with changes to your body image. Even though people may not be able to see the changes, you may worry that you do somehow look different.

It is quite normal to worry about these things. 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, so let them know how you are feeling. Shutting them out will only make you feel more isolated and less able to cope with things.

 

Who can help you cope

There are several things that may help you cope with changes in the way your genital area may look after surgery. They may not take away all the emotional pain but they can make things easier. They include

Talking to your surgeon before your surgery

This is probably one of the most important things you can do, even if you feel at the time that you are not ready to know how surgery may change your genital area. But talking to your surgeon before your operation really will help you deal with things later on. Ask your surgeon to be very honest with you and find out exactly what they are going to do and how you will 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 doctor questions. Your surgeon will be sensitive to how worried you are about changes in your body and will want to reassure you where possible.

Talking to a woman who has had a similar experience

This may not help everyone so do not feel you have to do this. But some people find it very helpful and reassuring to speak with someone else who has had to cope with this type of surgery. Your surgeon may be able to put you in touch with someone who has had a similar operation to yours. Or have a look at the vulval cancer organisations page.

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 surgery to talk very openly. But you will be surprised how much it can help just to share your feelings.

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. There is more about sexuality after vulval cancer surgery further down this page.

Getting help and support

Not everyone feels comfortable asking for outside help and support, but many people find it very useful. You don't need to deal with your experience alone, unless you prefer to. Although this is a rare type of cancer there are a number of organisations and support groups that help people cope with their feelings after vulval surgery. Here is a list of possible sources of help

  • Many hospitals have specialist nurses (called gynaecology nurses, or gynae oncology specialist nurses) to support you
  • Your hospital doctor or GP can help
  • A caring partner or close friend can give you support
  • The RV club – run by an ex-patient who has had a radical vulvectomy and is happy to talk to other women going through it, as well as to their friends and families
  • Vulval Awareness Campaign Organisation (VACO) – a UK organisation set up by someone who has had vulval cancer, this group offers a support network and one to one telephone support

There is more information about these organisations on our vulval cancer organisations page.

 

Sexuality after vulval surgery

Vulval surgery will affect your physical ability to have sex. And your emotions may change your sexual feelings for a while. Women generally need to feel happy with their bodies to have a satisfying sex life. One recovered patient said to us that it was certainly possible to have a very satisfying sex life after radical vulvectomy, but not until you've accepted the new you.

This type of surgery does not affect your ability to become pregnant. But discuss this with your doctor if you are having any other type of treatments such as radiotherapy or chemotherapy. These treatments may affect your fertility.

After surgery, it can take several months for the vulval area to heal and for sensation in the area to improve. If surgery has caused scarring, your vagina may be much tighter than it was before surgery. You may need to use a vaginal dilator to help stretch it again. 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). So do not feel you have to rush things. You may not feel like having sexual intercourse for some time but you can still enjoy intimacy with touch and through talking to your partner. Encouragingly, 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 – even a deeply loved partner. Others need almost instant comfort and find loving touch will relieve their fear of being rejected.

If you find it difficult to relax during sex, you may find it helpful to learn how to relax. There are books and tapes that explain relaxation techniques. Contact your local cancer support group – they may have books and tapes they can lend you, or they may have classes at their group. Your specialist nurse or library may have relaxation tapes or books you can borrow.

Be aware this can be a difficult time for your partner as well. They may not know how to give you the love and support you need so try to involve them in discussions with your doctor about your surgery and how it may affect your relationships. This can have a positive effect on your recovery.

If you are not in a relationship at the moment, you may feel worried about starting a new one after your operation. Talk to your gynaecological nurse specialist about how you are feeling. You may find it helpful to get in touch with someone who has been through this type of surgery. There are organisations in the vulval cancer organisations section who will be able to put you in touch with someone who has been through a similar experience.

If you would like to talk to someone outside your own friends and family, look in our page about counselling organisations that can help put in touch with someone. To find out more about counselling look in What is Counselling?

Arriving home from hospital after surgery can be an anxious time. Coming to terms with all you have experienced and the changes to your body can be a lot to deal with. You may find it helpful to take your partner on your clinic visits before the operation. That way they will be prepared for how you may feel and look when you come home. They may be more able to help support you emotionally if they understand what is planned.

 

Swelling in your groin or legs

Obviously the area where you've had surgery will be swollen afterwards. But 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).

The lymph nodes are part of your body's drainage system. So if you've had lymph nodes removed from your groin, this can affect the natural circulation and drainage of tissue fluid from the leg on that side. If it isn't checked, your leg could become very swollen and painful. If you think you are developing swelling, it is very important to let your specialist know right away. To start with, your shoe may feel tighter than normal, for example.

The doctor will probably want to see and examine you. Then you will get a referral 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.

There is information on how to help prevent lymphoedema in the vulval surgery side effects section.

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Updated: 11 December 2013