Side effects of surgery for vulval cancer
This page tells you about side effects of vulval cancer surgery. You can find information about
Side effects of surgery for vulval cancer
You are very unlikely to get all the side effects we've covered here. Generally speaking, the smaller the operation, the fewer the side effects. Possible side effects after surgery for vulval cancer include
- Scarring – scar tissue may narrow the entrance to your vagina and make it painful to have penetrative sex. You may be able to stretch your vaginal opening using dilators. Your doctor or nurse will explain how to use them
- Numbness, tingling and pins and needles – these are caused by nerve damage during surgery. They will slowly get better with time, but may not disappear completely
- Your sex life – some women who have had a vulvectomy have a reduction in sexual desire or pleasure and may also have problems reaching orgasm. This is most likely if you've had to have your clitoris removed. We have more information about sexuality after vulval cancer
- Swelling – if lymph nodes in your groin are removed, you may develop swelling in the genital area or legs. This is called lymphoedema. It can be painful and tiring. If you do notice any redness, pain or swelling, it is important to tell your doctor straight away. Lymphoedema is easiest to control if it is caught early.
You can view and print the quick guides for all the pages in the Treating vulval cancer section.
You are very unlikely to get all the side effects we've covered here. We have to include all possible side effects to cover everyone's need for information. Which side effects you have will depend on the type of operation you have had. Generally speaking, the smaller the operation, the fewer the side effects.
All surgery can cause immediate side effects, such as pain. Other common side effects are infection and blood clots.
Read more about the possible complications of surgery.
It is likely to take some time for you to come to terms with your surgery and any side effects. But don't feel that you are abnormal if you are having trouble accepting things. Many women will feel the same as you do. You have had surgery to a very intimate part of your body. It can make you feel less womanly or sexual. You may feel embarrassed about how your genital area looks now.
Read about how to cope with these side effects in the section on living with vulval cancer.
Sometimes sadness or trouble coping can tip over into depression. There is no shame in this, of course. Depression is a clinical condition, just like physical illness, and you don't choose to have it any more than you chose to have vulval cancer. If you are concerned that you may not be coping as well as you might, do talk to your GP, specialist or nurse. A short course of anti-depressants may help you to cope. You may also benefit from some counselling. Talking to friends and family often helps. But talking to someone who isn't closely involved and will give you the listening time you need can be very helpful.
Any of these operations can cause scar tissue to form. Scar tissue is more fibrous than healthy tissue. This means it is stiffer and less stretchy. If scar tissue forms around the outside of your vagina, it may narrow the entrance. You may then find penetrative sex can be painful. Scar tissue may change the shape and size of your remaining vulval tissue, which will take a bit of getting used to.
If you need to, you may be able to stretch your vaginal opening with vaginal dilators. These are shaped like a tampon, but bigger. You put the dilator into your vagina to stretch it. They come in sets of different sizes - the first size is a bit bigger than a tampon. You use them with a water soluble lubricating gel. You begin with one of a comfortable size and use larger ones until your vagina is stretched enough for you to have sex comfortably. Your doctor or nurse will explain how to use them, and how often.
This may not be something you feel you can cope with straight after your surgery. Give yourself a bit of time. Once your wounds heal and you have time to come to terms with all that has happened to you, you will be more likely to feel able to do it. Some people like to involve their partner with this, but this is entirely up to you. Only you know how you will cope best.
Your doctor should be able to get you a set of dilators from the radiotherapy department, as women use them after internal radiotherapy for other gynaecological cancers.
This method of stretching the vaginal opening doesn't always work if scarring is severe. If you feel it is not making much difference to you, then let your doctor or nurse specialist know. Your surgeon may be able to do an operation using skin grafts to widen the vaginal opening.
Many women are able to return to having sex and sexual feelings after surgery for vulval cancer. But vulval surgery can affect your physical ability to have sex. And your emotions may change your sexual feelings for a while
After vulvectomy, some women find they have less sexual desire or find sex less pleasurable. Some may also have problems reaching orgasm. This is most likely to happen if you've had to have your clitoris removed. Encouragingly, women who've had surgery tell us that orgasm is possible, even if you've had your clitoris removed, but may take longer.
You may also notice numbness in your genital area after a radical vulvectomy. This is caused by nerve damage, which is unavoidable during surgery. Nerves do heal, but very slowly. So the feeling may only start to come back months after your surgery.
Finding ways to cope with these changes can be hard, but not impossible. You can still enjoy a good sex life, but it may just take more time for you to relax and enjoy intimate touch and sex again.
Read more about this in the living with vulval cancer section.
Surgery can cause some nerve damage. The side effects from nerve damage will depend on what type of operation you have. Many women do not have any noticeable effects.
But some women can have strange sensations such as
- Pins and needles
- Unexplained hot or cold areas
- Feelings similar to mild electric shocks
- Complete numbness in some areas of skin
Where you get these feelings depends on which nerves were damaged. You may have these odd feelings between your legs, in your groin or down one or both legs. These are genuine, recognised side effects of surgery. The good news is that nerves do heal, although very slowly. It may take months or even years for them to fully heal. But slowly, the problems should lessen. Unfortunately some women may have permanent nerve damage, which won't completely go away, but should still improve over time.
If the surgeon removes lymph nodes in your groin, you may develop some swelling in the genital area or in your legs. This condition is called lymphoedema. It can be painful and tiring. It may affect one or both legs.
If you do notice any redness, pain or swelling, it is important to tell your doctor about this straight away. These could be signs of infection and you need prompt treatment with antibiotics. Lymphoedema is easiest to control if it is caught early. It is important for you to be referred to a lymphoedema specialist if you have signs of swelling. This is usually a nurse or physiotherapist.
Look at the British Lymphology Society for a register of UK lymphoedema practitioners.
Specially fitted support type stockings may help. If the swelling is more advanced, your lymphoedema nurse or physiotherapist may suggest compression bandaging to try to reduce it. This means putting layers of bandage fairly tightly around the leg. The bandages will press on the swelling and gradually push fluid out of the tissues and back into the lymph circulation.
There are also some types of massage that can help, particularly manual lymphatic drainage (MLD). Some specialists use inflatable sleeves to gently squeeze fluid up towards the top of your legs so that it can drain away through the lymphatic vessels. The lymphatics are tiny tubes that carry tissue fluid around the body and empty it back into the bloodstream.
Lymphoedema can come on years after your treatment. To help prevent it, you should do all you can to avoid infections in your legs. Having an infection leads to local swelling. This can start lymphoedema off if you've already had surgery or radiotherapy to your lymph nodes. It is a good idea to
- Try to protect your legs and feet from sharp objects - don't walk around in bare feet and wear long trousers for gardening
- Wear insect repellent so that you won't get bitten
- Take care of all cuts, scratches or bites without delay, by cleaning with antiseptic and covering with a dressing
- Avoid sunburn
- Take extra care when cutting your toenails - you should not cut or tear the cuticles
- Use an electric razor carefully if you must shave your legs
Most women who have surgery for vulval cancer will not have any problems with their bladder or bowel. It depends on the type of surgery you have had. It is difficult to give specific information as these situations are so uncommon and can vary so much. So you will need to check with your doctors exactly what they are going to do and how it will affect you.
Sometimes, an area of VIN or vulval cancer grows very near to the opening of the back passage. So this area has to be included in the surgery.
Advanced vulval cancer can sometimes spread to the wall between the vagina and the rectum, or up into the tube that carries urine out of the bladder (the urethra). In these situations, your surgeon may suggest a very large operation that involves rectal or bladder surgery. These operations are called pelvic exenteration.
Women who have a pelvic exenteration generally need support to manage and come to terms with the changes to their body. You will have support from a specialist nurse. You may also find counselling helpful.
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