Problems after vulval cancer surgery

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. Which side effects you have, depends on the type of operation you have had. Generally speaking, the smaller the operation, the fewer the side effects.

Your feelings

It takes time for you to come to terms with surgery and the possible 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, while others prefer to wait. There is no right or wrong way. It is important that you feel ready. Your nurse can be with you the first time you do this.

As you have had surgery on a very intimate part of your body, you may feel less attractive or sexual. You may feel embarrassed about how your genital area looks now.

Talk to your GP, doctor or specialist nurse if you think you may not be coping as well as you might. They can suggest different things to help you such as counselling. Talking to someone who isn't closely involved can be very helpful and give you the listening time you need. 

Leg and groin swelling

It is common to have some swelling around the genital area for a couple of weeks after surgery. If this continues or you notice some swelling in your legs or feet, you may be developing lymphoedema.

Lymphoedema is a build up of lymph fluid that causes swelling in a part of the body.  

You are more at risk of developing lymphoedema if the surgeon removes lymph nodes in your groin during surgery. This is a lymph node dissection or lymphadenectomy. It may affect one or both legs depending on the type of surgery you had. 

Treating lymphoedema

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. 

There are different treatments for lymphoedema. These include:

• specially fitted stockings
• manual lymphatic drainage (MLD)
• compression bandaging
• inflatable sleeves to gently squeeze fluid up towards the top of your legs

Tips

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.

Scarring

Scar tissue can form around the vulval area after surgery. 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 painful. Scar tissue may change the shape and size of your remaining vulval tissue.

Treatment for vaginal narrowing

Stretching your vaginal opening with vaginal dilators can help. These are inserted into the vagina for a few minutes each time you use them.

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

Contact your specialist nurse or doctor if you have any problems or questions. A surgeon can sometimes use skin grafts to widen the vaginal opening if dilators have not worked.

Your sex life

Many women are able to return to having sex after the wound has healed. This can take about 6 to 8 weeks. But for some, it can take months or longer before they are ready for sex after surgery.

It may help to talk to your doctor or nurse who can support you and your partner if you have one. They may refer you to a counsellor who specialises in sexual problems. 

After surgery for vulval cancer, you might find sex less pleasurable or have problems reaching orgasm. This is most likely to happen if you've had the clitoris removed. Some women still find sex pleasurable after surgery but may take some time.

You may also notice numbness in your genital area after a radical vulvectomy. This is due to nerve damage, which can happen 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.

Numbness or tingling sensations

Depending on the type of surgery you have had, you may have some nerve damage. This can cause different side effects such as:

• tingling
• pins and needles
• unexplained hot or cold areas
• feelings similar to mild electric shocks
• complete numbness in some areas of the skin

Where you get these feelings depends on which nerves were damaged. You may have these feelings between your legs, in your groin or down on your legs. 

It is important to remember that nerves heal with time. But it may take months or even years for them to fully heal. Slowly, the problems should lessen.

Rarely, some women may have permanent nerve damage. This means that these side effects won't go away completely, but they should still improve over time.

Bowel and bladder problems

Most women who have surgery for vulval cancer will not have any problems with their bladder or bowel.

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.

Pelvic exenteration

Vulval cancer can sometimes spread from the vulva to other parts of the body such as the bowel, bladder or womb. In these situations, your surgeon may suggest a very large operation that involves bowel or bladder surgery. This is a pelvic exenteration. 

This operation is rare for vulval cancer. Your surgeon will only consider this if you are fit enough to make a good recovery. 

Coping and support after treatment for vulval cancer

Surgery for vulval cancer can be very difficult to cope with. It is important for you to have access to emotional support and information.