Managing side effects


It will take some time to recover from the physical and emotional changes caused by treatment for vulvar or vaginal cancer. Treatment side effects can vary - some women experience many side effects, while others have few. Side effects may last from a few weeks to a few months or, in some cases, years or permanently. This section includes ways to reduce or manage the discomfort that side effects may cause.

Fatigue

It is common to feel very tired and lack energy during and after cancer treatment. 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

  • Plan your day. Set small manageable goals and rest before you get too tired.
  • Keep your schedule as regular as possible, e.g. avoid sleeping in, go to bed at your usual time, and take a short nap if you get tired throughout the day.
  • Ask for and accept offers of help from family and friends, e.g. with shopping, errands and childcare.
  • Aim to eat a healthy, well-balanced diet.
  • Regular light to moderate exercise has been shown to reduce fatigue. Even a walk around the block can help. Talk to your doctor about the amount and type of exercise suitable for you. A physiotherapist or exercise physiologist can develop a program that is right for you.
  • Don't expect to be able to instantly do everything you used to do. Gradually build up the amount of activity you do each day.

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 radiation therapy, 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."

Tell your cancer story.

Changes to the vulva

Whether you have vulvar or vaginal cancer, the treatments may 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.

Radiation therapy 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 radiation therapy, 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.

Changes to the vagina

Treatments for vulvar or vaginal cancer can also affect the vagina. Radiation therapy 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 drier, 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. Whether intercourse is still possible after vaginal surgery depends on the extent of the operation.

Changes to your body can affect the way you feel about yourself (your self-esteem) and make you feel self-conscious. You may feel less confident about who you are and what you can do. Try to see yourself as a whole person (body, mind and personality) instead of focusing on the parts that have changed.

Tips for managing changes to the vagina

  • Keeping the vagina open and supple can make vaginal sex more comfortable, but it is important even if you don't 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 cervical screening 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 tube-shaped devices made from plastic or rubber. They come in different sizes. Begin with the smallest dilator and progress to larger ones as each size becomes more comfortable.
  • Find a quiet, private place. Using a water-based lubricant, slowly insert a dilator into the vagina. Leave it there for 5-10 minutes. You will need to do this 3-5 times a week, usually for many months.
  • Your nurse, doctor or physiotherapist will provide the dilators or let you know where to buy them, and 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 will help with vaginal discomfort and dryness. Hormone creams are available on prescription, while vaginal moisturisers are available overthe-counter from pharmacies.
  • Some women 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. See more tips on managing sexual changes.
  • 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're in this situation, talk to your doctor about using dilators to keep your vagina open.

Bladder and bowel problems

Radiation therapy 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.

Cystitis

Radiation therapy 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. Over-thecounter urinary alkalinisers (e.g. Ural) can help by making the urine less acidic. Your doctor may also prescribe medicine to treat cystitis.

Urinary incontinence

Incontinence is when urine leaks from your bladder without your control. Bladder control may change after surgery or radiation therapy to the vulva or vagina. Some women find they need to pass urine more often or feel that they need to go in a hurry. Others may leak 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. They may suggest exercises to strengthen your pelvic floor muscles. For more information, visit bladderbowel.gov.au, or contact the Continence Foundation of Australia on 1800 33 00 66 or at continence.org.au.

"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

If you're having trouble sleeping, talk to your doctor. Cognitive behaviour therapy has been shown to be effective in addressing sleep problems. Or you can listen to our podcast on " Sleep and Cancer" to hear why cancer affects sleep and how to get the sleep you need.

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.

Changed bowel movements

After surgery or radiation therapy, some women notice bowel problems. You may experience diarrhoea, constipation or stomach cramps. In rare cases, the bowel may become blocked (bowel obstruction). Your doctor may be able to prescribe medicines to help prevent or relieve these side effects. They can also refer you to a dietitian who can suggest changes to your diet.

Blood in urine or bowel movements

The blood vessels in the bowel and bladder can become more fragile after radiation therapy. This can cause blood to appear in your urine or bowel movements, even months or years after treatment. Always seek advice from your specialist or GP if you notice new or unusual bleeding. Keep in mind that it may not be related to your treatment.

Lymphoedema

Lymphoedema is a swelling of part of the body. In the case of vulvar or vaginal cancer, lymphoedema usually affects a leg or, less commonly, the genitals. Sometimes the swelling can take months or years to develop, and some women who are at risk never develop lymphoedema.

Although lymphoedema may be permanent, it can usually be managed. Gentle exercise, compression stockings, and a type of massage known as lymphatic drainage can all help to reduce the swelling. Talk to a lymphoedema professional about tailoring a treatment plan for you. See Understanding Lymphoedema.

Tips for managing lymphoedema

  • Treat lymphoedema early so that you can deal with the problem quickly and avoid symptoms becoming worse.
  • Visit lymphoedema.org.au to find a lymphoedema practitioner or ask your doctor for a referral. Ask your GP if you are eligible for a Medicare rebate for sessions with a lymphoedema practitioner.
  • Maintain a healthy body weight.
  • Reduce the risk of infection by keeping your skin moisturised and caring for your nails.
  • Avoid cuts, scratches, burns, insect bites, sunburn and injections in your legs.
  • Wear a professionally fitted compression garment, if advised by your lymphoedema practitioner. For details about compression garment schemes visit lymphoedema.org.au.
  • Do leg exercises to move fluid out of the affected area and into other lymph channels.
  • If your legs are swollen or hot, 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, insomnia, dry or itchy skin, mood swings, or loss of interest in sex (low 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. See Understanding Fertility.

Tips for managing menopause symptoms

  • Talk to your doctor about the benefits and risks of hormone replacement therapy (HRT). If taken after natural menopause, HRT containing oestrogen may increase the risk of some diseases. If you were already on HRT when the cancer was diagnosed, you will need to weigh up whether to continue.
  • See tips on managing vaginal dryness.
  • Ask your doctor about having a bone density test or taking medicine to prevent your bones from becoming weak. Regular exercise will help keep your bones strong. Osteoporosis Australia has more information - call 1800 242 141 or visit osteoporosis.org.au.
  • Meditation and relaxation techniques may help reduce stress and lessen symptoms. Call 13 11 20 for a free copy of our relaxation and meditation CDs. You can also download various apps to your phone.
  • Cognitive behaviour therapy has been shown to help women manage their symptoms. Ask your GP for more information.

Impact on sexuality

Vulvar or vaginal cancer can affect your sexuality in physical and emotional ways. Treatment can cause physical side effects such as tiredness, scarring, narrowing of the vagina, swelling and soreness (see above). The experience of having cancer can also reduce your desire for sex (libido).

Many women are able to have sexual intercourse after treatment. Others may have to explore new ways to enjoy sex, but remember that for most people, sex is more than just intercourse. It involves feelings of intimacy, as well as being able to give and receive pleasure and love. See Sexuality, Intimacy and Cancer or listen to our podcast on " Sex and Cancer".

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.
  • Extra lubrication may make intercourse more comfortable. Choose a water-based or silicone-based gel without perfumes or colouring.
  • Talk to your doctor about ways to manage side effects that change your sex life. This may include using vaginal dilators and creams.
  • Explore other 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 for a referral to a sexual therapist or psychologist.
  • See Intimacy and sexuality for women with gynaecological cancer - starting a conversation at canceraustralia.gov.au.

Key points about managing side effects

Common side effects

Some women experience few side effects from treatment, while others have many. Common side effects include fatigue, changes to the vulva and vagina, bladder and bowel problems, lymphoedema, menopause and sexual changes.

Managing side effects

Talk to your treatment team about any symptoms or side effects you have. They may be able to suggest ways to reduce or manage discomfort caused by side effects.

Changes to the vulva and vagina

Treatment can change the way the vulva and vagina look and feel. You may be advised to use creams to soothe and protect the skin or a vaginal dilator to help keep the vaginal walls open and supple. It's natural to feel anxious and upset about any changes to your body.

Menopause

Treatment may cause menopause. This means your periods stop, you may have symptoms such as hot flushes and mood swings, and you will not be able to become pregnant. If you are concerned about your fertility, talk to your medical team as soon as possible.

Sexuality

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.

Expert content reviewers:

Prof Jonathan Carter, Director, Gynaecological Oncology, Chris O'Brien Lifehouse, and Professor of Gynaecological Oncology, The University of Sydney, NSW; Ellen Barlow, Clinical Nurse Consultant, Gynaecological Cancer Centre, The Royal Hospital for Women, NSW; Dr Dani Bullen, Clinical Psychologist, Peter MacCallum Cancer Centre, VIC; Wendy Cram, Consumer; Dr Tiffany Daly, Senior Radiation Oncologist, Radiation Oncology Princess Alexandra Raymond Terrace (ROPART), South Brisbane, QLD; Kim Hobbs, Clinical Specialist Social Worker, Westmead Centre for Gynaecological Cancer, Westmead Hospital, NSW; Anya Traill, Head of Occupational Therapy and Physiotherapy, Peter MacCallum Cancer Centre, VIC.

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