Find out how you’ll feel after your treatment, and how to cope with possible problems.
Follow up after surgery
You’ll 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.
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 sometimes 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 the 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 self help 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.
How you might look
Immediately after surgery, your genital area will be swollen and bruised. This will heal but 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.
Radiotherapy to the vulva can also change the way the vulva looks, for example the skin colour may be 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
There are several things that may help you cope with changes in the way your genital area may look after treatment. They may not take away all the emotional pain but they can make things easier. They include:
- talking to your surgeon before your surgery
- talking to a woman who has had a similar experience
- talking to the people close to you
- getting help and support
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 tell you 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 surgeon questions. They will be sensitive to how worried you are about changes in your body and will want to reassure you.
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 the same treatment as them. Your specialist may be able to put you in touch with someone who has had a similar experience.
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 openly. 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.
Surgery does not affect your ability to become pregnant. 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.
Vulval surgery and radiotherapy can affect your physical ability to have sex. Your emotions may also change your sexual feelings.
It can take several months for the vulval area to heal after treatment and for sensation in the area to improve. Surgery and radiotherapy can 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.
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.
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.
Swelling in your groin, legs or genitals
After surgery, the 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).
The lymph nodes are part of your body's drainage system. 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.
Your leg could become swollen and sometimes this can be painful. Some people may have swelling in the groin and genital area. 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.
The doctor will probably want to see and examine you 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.
Exercises for lymphoedema
Your physiotherapist or nurse will show you some exercises you can do at home if you have lymphoedema.
Below are 2 videos that can help you with these exercises. Both are by a physiotherapist called Carla from the lymphoedema team at University College Hospital London. Speak to your doctor or lymphoedema specialist if you are unsure about doing any of them.
The first video shows you how to do breathing exercises. The second video shows you how to do leg exercises. It is important to do the breathing exercises before and after the leg exercises.
These exercises should not be painful, so you must stop them if you have any pain. If the pain doesn't get better contact your doctor. Do each exercise slowly and gently, and it may help to rest in between.
The video about deep breathing exercises is 1 minute long.
Hi I’m Carla, I’m going to show you how to do deep abdominal breathing. Remember to have a nice posture, relaxed shoulders. You can do them sitting down or standing up. Remember to breathe in by nose and breathe out by mouth.
So, when you breathe in, imagine you have a balloon in your tummy and you inflate this balloon and when you breathe out, imagine you’re deflating this balloon. You need to feel your hand going in so we’ll do it together now. We’ll breathe in…. and out.
Remember to do them a maximum five times and before and after you do your lymphoedema exercises.
Watch our videos for the exercises of the area where you have lymphoedema or you’re at risk of lymphoedema.
The video about leg exercises is just over 4 minutes long.
Leg exercises for lymphoedema
Hi, I’m Carla. I’m going to show you how to do leg exercises. Remember before you start to do your deep abdominal breathing exercises before and after. And repeat each exercise 5 to 10 times. Remember they need to be all pain free.
Upper leg exercises
We’ll start marching on the spot. Very gently. And then if possible go as high with your knees as you can. If you need help with your balance, hold on to a stable surface and again do some marching on the spot gently and as high as you can go.
Next one will be heels to bottom and again if you feel you need a bit of help with your balance, hold on to a stable surface.
Next one will be working with the hips, rotating. We’ll be bringing our foot forward and drawing a semi-circle. This knee needs to be bent slightly and if you can, you will lift your foot a bit from the ground. If you need a bit of help with your balance, we’ll do it holding on to a stable surface. We’ll do the same drawing a semi-circle on the floor and if possible, lifting the foot a bit.
Next exercise we’ll do touching the knee with the opposite hand and if you need help with your balance instead of alternating we’ll do first one side and then don’t forget to do the other leg.
For the knee we’ll need to sit down on a chair. We’ll do marching on the spot. You can use your arms, or you can have your arms on your lap.
We’ll be extending and bending the knees. If you have a bit of a problem with pain, you can do it a bit lower.
Next one we’ll be focusing on the ankle. We’ll do heel up and down as much as possible. Up and slowly going down to the floor.
Next one will be toes up.
And to finish, we’ll focus on the ankle. This one you can do sitting down on a recliner chair or on a bed. What you’ll do is go up and down as much as possible. And you’ll do one leg and then the other. Or if you’re on the bed or on the recliner chair, you can do it both at the same time.
And then we’ll do circles and as much as possible looking for all the positions of the foot. One direction and then the other.
Remember to do all the exercises once a day and if you have any concerns just speak to your doctor or your lymphoedema specialist.
And remember that you have more information about lymphoedema on the Cancer Research UK website.