Managing side effects

Saturday 1 October, 2016

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On this page: Fatigue | Changes to the vagina | Changes to the vulva | Bladder and bowel problems | Lymphoedema | Menopause | Impact on sexuality | Kayleen's story | Key points


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.

Fatigue

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.

Tips for managing fatigue
  • Work out your priorities, so you save your energy for the most important things.
  • Allow yourself enough rest so you can recover, but balance this with regular exercise, which can help reduce treatment-related fatigue.
  • Ask family and friends for practical support, such as help with shopping, errands and childcare.
  • For more information see Living Well After Cancer or call Cancer Council 13 11 20.

Changes to the vagina

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.

Tips for keeping the vagina open and supple
  • Keeping the vagina open and supple can make vaginal sex more comfortable, but it is important whether or not you plan to be sexually active. It will allow your doctor to do a vaginal examination at follow-up visits to check for a recurrence of cancer, as well as regular Pap tests.
  • If cancer treatment has narrowed or shortened the vagina, you may be advised to use a vaginal dilator to help keep the vagina open and prevent it from closing over.
  • Vaginal dilators are shaped like tampons and made from plastic or rubber. They come in different sizes, so you start with the smallest size and progress to larger ones as each size becomes more comfortable. Using a lubricant, you insert a dilator into the vagina and leave it there for up to five minutes. You will need to do this at least three times a week, usually for many months.
  • Your nurse or doctor will give you a set of dilators or let you know where to buy them, and can give you more detailed instructions about when and how to start using them.
  • Ask your doctor if applying a hormone cream or a vaginal moisturiser to your vagina will help. Hormone creams are available on prescription, while vaginal moisturisers are available over-the-counter from pharmacies.
  • Some people like to use vibrators (available from sex shops and online) to gradually widen the vagina. Talk to your treatment team if you would prefer to use vibrators instead of vaginal dilators.
  • Although dryness, shortening and narrowing of the vagina can make sexual intercourse uncomfortable or difficult, having intercourse regularly – if you are able to and want to – may help keep the vagina open. Using a water-based or silicone-based lubricant, such as Sylk, Pjur or Astroglide, and trying different sexual positions can help.
  • Some women do not have a sexual partner or do not feel emotionally or physically ready to have penetrative sex after cancer treatment. If you do not want to have sex, this is okay, but talk to your doctor about using dilators to keep your vagina open.

Changes to the vulva

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.

Tips for managing changes to the vulva
  • After vulvar surgery, some women don’t want to look at the area or prefer to do it alone or with a partner or close friend. Others want a nurse to be with them.
  • After radiotherapy, use lukewarm water to wash your genital area and gently pat it dry with a towel. Avoid using any perfumed products or talcum powder on the area.
  • Talk to your treatment team about creams to soothe and protect the skin, and also about pain relief if necessary.

Bladder and bowel problems

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.

Effects on the bladder
Cystitis

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.

Urinary incontinence

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.

Difficulty urinating

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.

Bleeding

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
Effects on the bowel
Changed bowel movements

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.

Bleeding

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

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.

Tips for managing lymphoedema
  • Make an appointment with a lymphoedema practitioner. Ask your doctor – there may be one at your hospital. Visit lymphoedema.org.au to find a practitioner and to learn more about lymphoedema.
  • Reduce the risk of infection by keeping your skin moisturised and caring for your nails.
  • Avoid cuts, burns, insect bites, sunburn and injections in your legs.
  • Talk to a lymphoedema practitioner or your nurse about wearing compression bandages, stockings or other garments to improve the circulation of lymphatic fluid.
  • Do leg exercises to move fluid out of the affected area and into other lymph channels.
  • Gently massage the swollen leg towards your heart to move the fluid out to other lymph channels.
  • If you see any swelling or feel any heat in your legs, let your doctor or nurse know as soon as possible.

Menopause

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.

Tips for managing menopause
  • Ask your doctor about using oestrogen, contained in creams or soluble blocks called pessaries, to relieve vaginal dryness. Vaginal moisturisers without oestrogen can also be used.
  • Hormone replacement therapy (HRT) may help to reduce symptoms. Talk to your gynaecological oncologist about the benefits and risks of HRT for you. If you were already on HRT when the cancer was diagnosed, weigh up the risks of continuing it.
  • Ask your doctor about having a bone density test or taking medicine to prevent your bones from becoming weak.
  • For more information about osteoporosis, visit Osteoporosis Australia or call 1800 242 141.
  • To find out more about the impact of treatment on fertility, see Fertility and Cancer or call Cancer Council 13 11 20.

Impact on sexuality

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.

Tips for managing sexual changes
  • Give yourself time to get used to any physical changes. Let your partner know if you don’t feel like having sex, or if you find penetration uncomfortable.
  • Talk to your doctor about ways to manage side effects that change your sex life. This may include using vaginal dilators and vaginal creams.
  • Extra lubrication may make intercourse more comfortable. Choose a water-based or silicone-based gel without perfumes or colouring. Explore different ways to climax, such as caressing the breasts, inner thighs, feet or buttocks.
  • Talk about your feelings with your sexual partner or doctor, or ask your treatment team for a referral to a sexual therapist or psychologist.
  • For more information see Sexuality, Intimacy and Cancer or call Cancer Council 13 11 20.

Kayleen’s story

"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."

Key points

  • There are ways to reduce or manage discomfort caused by side effects.
  • You might feel tired during and after treatment. Plan to rest regularly and get support from a community nurse, family and friends, if possible.
  • Radiotherapy to the pelvic area can make the vagina narrower and less flexible. You may be advised to use a vaginal dilator or have sex to help keep the vaginal walls open and supple.
  • It is a personal decision whether or not you would like to look at your vulva after surgery. It is natural to feel anxious and upset about any changes to your body.
  • Treatment can cause bladder and bowel problems such as bleeding, incontinence or cystitis. For some women, urine may spray in different directions or off to one side.
  • If your lymph nodes have been removed or damaged, you may get swelling in one or both legs. This is called lymphoedema. There are ways to prevent or reduce the swelling.
  • Treatment may cause you to go through menopause. This means your periods stop and you may have symptoms such as hot flushes and mood swings. Menopause will cause infertility. If you are concerned about your fertility, talk to your medical team as soon as possible.
  • Cancer and its treatment may affect sexuality in physical and emotional ways. A sexual therapist or psychologist may be able to help you find new strategies for expressing intimacy and enjoying sex.

Reviewed by: Professor Selvan Pather, Senior Staff Specialist, Chris O’Brien Lifehouse, NSW; Dr Tiffany Daly, Radiation Oncologist, Mater Cancer Care Centre, South Brisbane, QLD; Anne Mellon, Gynaecological Clinical Nurse Consultant, Gynaecological Oncology, Hunter New England Centre for Gynaecological Cancer, and Chair, Gynaecological Oncology Specialist Practice Network, Cancer Nurses Society of Australia, NSW; Deb Roffe, 13 11 20 Consultant, Cancer Council SA, SA; Juliane Samara, Gynaecological and Brain/Central Nervous System Tumour Cancer Specialist Nurse, Canberra Region Cancer Centre, ACT; Robyn Teuma, Consumer; Dr Charlotte Tottman, Clinical Psychologist, Allied Consultant Psychologists and Flinders University, SA; Dr Paige Tucker, Research Registrar and Gynaecological Oncology Clinical and Surgical Assistant, St John of God Subiaco Hospital, WA.