It will take some time to recover from your treatment for vulvar or vaginal cancer. As well as physical changes, you will also have to cope with the emotional impact of treatment.
Treatment side effects can vary. Some women will have a few side effects; others will have more. Side effects may last from a few weeks to a few months or, in some cases, years or permanently. There are ways to reduce or manage the discomfort that physical side effects cause.
It is common to feel tired or fatigued during and after cancer treatment. This can be a side effect of treatment, but can also be caused by travelling to treatment and dealing with emotions. Your tiredness may continue for a while after treatment has finished. Some women find it takes them a few years to feel well again.
Whether you have vulvar or vaginal cancer, the treatments may affect the vagina.
Radiotherapy targeted to the vulva or vagina can make the area tender during treatment and for a few weeks afterwards. In the long term, this irritation can cause scarring, which may make the vagina dryer, narrower, shorter and less flexible (vaginal stenosis).
Surgery for vulvar cancer may cause scar tissue to form around the outside of the vulva, narrowing the entrance to the vagina. This can make intercourse painful.
Surgery for vaginal cancer may make the vagina shorter or narrower (vaginal stenosis). Whether intercourse is still possible after vaginal surgery depends on the extent of the operation. See information about managing the impact on sexuality.
Treatments for vulvar or vaginal cancer can also affect the vulva.
Women who have had surgery affecting their vulva have different feelings about looking at changes to their genital area. If you decide to look at your vulva, it is natural to feel shocked by any changes. If the labia have been removed, you will be able to see the opening to the vagina more clearly. If scar tissue has formed around the outside of the vagina, the entrance to the vagina will be narrower. If the clitoris has been removed, there will now be an area of flat skin without the usual folds of the vulva.
Radiotherapy may make your skin dry, itchy and tender in the treatment area. Your skin may temporarily look red, tanned or sunburnt, and then peel or blister. These skin reactions can be painful and may worsen in the two weeks after treatment finishes, but will gradually get better after that.
Radiotherapy and surgery to the vulva or vagina can cause bladder and bowel problems. Most side effects are temporary, but for some women, the changes are permanent. Talk to your treatment team for more information.
Radiotherapy can irritate the lining of the bladder. You may feel like you want to pass urine frequently or you might experience a burning sensation when you pass urine. This is called cystitis. Try to drink plenty of water to make your urine less concentrated. Cranberry juice or over-the-counter urinary alkalisers (e.g. Ural) can help by making the urine less acidic. Your doctor may also prescribe medicine to treat cystitis.
Accidental or involuntary loss of urine is called incontinence. After surgery or radiotherapy to the vulva or vagina, some women find that they lose a few drops of urine when they cough, sneeze, strain or lift. For ways to manage incontinence, talk to the hospital continence nurse or physiotherapist, visit the Australian Government’s bladder and bowel website at bladderbowel.gov.au, or contact the Continence Foundation of Australia at continence.org.au or on 1800 33 00 66.
After surgery to the genital area, your urine stream may spray in different directions or off to one side. This can be messy and frustrating. If you usually squat or crouch over the toilet seat, it may help to sit down towards the back of the toilet seat. Camping stores, some pharmacies and online retailers also sell reusable silicone funnels (often known as female urination devices) that you can use to direct the urine. Over time, the urine stream may flow in a more manageable way.
The blood vessels in the bladder can become more fragile after radiotherapy and this can cause blood to appear in the urine. It may occur many months or years after treatment. If you notice any bleeding, let your doctor know so that tests can be done and treatment can be given if required.
"My vulva is uneven, which makes peeing difficult. I used paper toilet seat covers as an instant fix and I purchased a female urination device called a GoGirl. It works like a funnel." – Nadine
Some women have constipation or diarrhoea after surgery or radiotherapy to the pelvic region. You may also feel some pain in your abdomen. To ease these side effects, your doctor can prescribe medicine and suggest changes to your diet. Drinking more water may also help. Ask the hospital dietitian or nurse for advice.
The blood vessels in the bowel can become more fragile after radiotherapy and this can cause blood to appear in the stools (faeces). It may occur many months or years after treatment. If you notice any bleeding, let your doctor know so that tests can be done and treatment can be given if required.
Lymphoedema is a swelling of part of the body. In the case of vulvar or vaginal cancer, lymphoedema usually affects a leg.
If lymph nodes in your pelvis or groin have been removed by surgery or damaged by radiotherapy, lymph fluid in the leg may be unable to drain properly, and this can cause the leg to swell up.
Sometimes the swelling can take months or years to develop, and some women who are at risk never develop lymphoedema.
In women who have not yet been through menopause, some treatments for vulvar or vaginal cancer can cause early (induced) menopause. Your periods will stop and you may have symptoms such as hot flushes, dry or itchy skin, mood swings, or loss of interest in sex (libido). Loss of oestrogen at menopause may also cause bones to weaken and break more easily (osteoporosis).
After menopause, you will not be able to become pregnant. If this is a concern for you, talk to your doctor before treatment begins.
Vulvar or vaginal cancer can affect your sexuality in both physical and emotional ways. Treatment can cause physical side effects such as tiredness, scarring, narrowing of the vagina, swelling and soreness. The experience of having cancer can also reduce your desire for sex (libido).
You may have to explore new ways to enjoy sex, but remember that for most people, sex is more than orgasms. It involves feelings of intimacy, as well as being able to give and receive love.
"I had a painful lump on my vulva for about two years, and I was diagnosed with cancer two weeks before my wedding.
"The cancer was advanced and had spread to my lymph nodes, so I had a vulvectomy to remove tissue all the way down to the bone. I also had six weeks of radiotherapy, which made the skin down there feel burnt and blistered. It took months to recover from treatment. There have been a lot of side effects. For instance, certain pants are still uncomfortable. And, although I can urinate, I’ve had a few bladder infections.
"In terms of sex, it would be possible to have penetrative intercourse, but it’s too painful. I’ve had four children, and I’d rather go through the pain of childbirth than have sex. I don’t want to be touched down there.
"My partner’s been fantastic and incredibly supportive – I couldn’t ask for anyone better. I’m part of a Facebook community and I know women whose partners haven’t coped with it, especially if the woman can’t have intercourse. My partner and I have found other ways to be intimate.
"I’ve struggled with shame and depression throughout treatment and recovery. Since surgery, I’ve looked at my vulva from above. I haven’t wanted to examine it closely with a mirror.
"It’s too bad that people don’t know more about this cancer. You hear about common types, like breast cancer. But even many GPs don’t know much about vulvar cancer – the GPs I saw thought I had genital warts.
"I’m over the embarrassment. If people ask, I tell them what type of cancer I had. If no-one talks about it, people won’t know. I didn’t know vulvar cancer existed before I was diagnosed."