You may experience some physical and psychological side effects after surgery for vulval cancer.
There is a risk of problems or complications after any operation. Many problems are minor but some are more serious. Treating them as soon as possible is important.
You are very unlikely to get all the side effects or problems we cover here. We 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.
It may take time for you to come to terms with surgery and any side effects. Many women feel different emotions. How you feel can change daily, this is a natural part of coming to terms with your cancer treatment. It is difficult to say how you will feel and how quickly you will recover, everyone is different.
Some women may choose to look at the vulval area soon after surgery others prefer to wait. There is no right or wrong way. It is important that you are ready and not to rush into this. Your nurse can be with you the first time you do this.
As you have had surgery to a very intimate part of your body you may feel less attractive or sexual, or you may feel embarrassed about how your genital area looks now.
Sometimes sadness or trouble coping can tip over into depression. Depression is a clinical condition, just like physical illness, and you don't choose to have it.
If you think 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 counselling. Talking to someone who isn't closely involved can be very helpful and give you the listening time you need.
Also talking to friends and family often helps.
Possible problems or complications
Any operation to the vulva can cause scar tissue to form. Scar tissue is stiffer and less stretchy. If scar tissue forms around the outside of your vagina, it may narrow the entrance.
You may find penetrative sex can be painful. Scar tissue may change the shape and size of your remaining vulval tissue.
Stretching your vaginal opening with vaginal dilators can help. These are inserted into the vagina for a few minutes each time you use them.
They come in sets of different sizes - the smallest 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 give you a set of dilators with written information. They will explain how to use them, and how often.
This may not be something you feel you can cope with straight after your surgery. Some people like to involve their partner with this, but this is entirely up to you.
This method of stretching the vaginal opening doesn't always work if scarring is severe. Let your doctor or specialist nurse know if you feel it is not making much difference to you.
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 after surgery for vulval cancer when the wound has healed. This can take about 6 to 8 weeks. Your emotions may also change your sexual feelings and it could take months or longer before you are ready for sex after surgery.
It may help to talk to your doctor or nurse who can support you and your partner. They may refer you to a counsellor who specialises in sexual problems.
After a vulvectomy, some women find sex less pleasurable or 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 due to 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.
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.
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.
It is important to remember that nerves do heal, although very slowly. It may take months or even years for them to fully heal. 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.
It is usual to have some swelling around the genital area after surgery for a couple of weeks. If this continues or you notice some swelling in your legs or feet you may be developing lymphoedema. This means a build up of lymph fluid that causes swelling in a part of the body.
This is a possible risk with vulval surgery if the surgeon removes lymph nodes in your groin. It may affect one or both legs depending on whether you had surgery to one of both groins.
Tell your doctor straight away if you notice any redness, pain or swelling. These could be signs of infection and you may need prompt treatment with antibiotics.
Lymphoedema is easier to control if treated early. It is important that you are referred to a lymphoedema specialist if you have signs of swelling. This is usually a nurse or physiotherapist.
Specially fitted support type stockings may help.
For more advanced swelling, your lymphoedema nurse or physiotherapist might 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 other ways to treat lymphoedema:
- manual lymphatic drainage (MLD)
- inflatable sleeves to gently squeeze fluid up towards the top of your legs
These both drain fluid 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 months or years after your treatment. To help prevent it, you should try 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.
It is difficult to give specific information as these situations are so uncommon and can vary so much. Check with your doctors about what they are going to do and how it will affect you.
In the first few weeks after surgery it is important to eat well and drink plenty of fluids to avoid constipation. This can delay wound healing if you have to strain when having a poo.
Drinking plenty of fluids also helps reduce the risk of developing an infection in your wee (urinary infection). Your specialist nurse or doctor can give you specific advice about this.
Advanced vulval cancer
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. This operation is called a pelvic exenteration.
Women who have a pelvic exenteration need support to manage and come to terms with the changes to their body. You will have support from a specialist nurse and may also find counselling helpful.
This operation is rare for vulval cancer. Your surgeon will only consider this if you are fit enough to make a good recovery. But for some women it is worth doing, because it may cure even an advanced cancer.
This type of surgery is more often done for advanced cervical cancer. If you go to the page below, please remember to use your back button to get back to this section. The other information about cervical cancer will not apply to you if you have vulval cancer.
Coping and getting support
Surgery to your vulva can be very difficult to cope with getting the information and support you need is important.