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Managing side effects of treatment for vulvar cancer
It will take some time to recover from the physical and emotional changes caused by treatment for vulvar cancer. Treatment side effects can vary – some people 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 page includes ways to reduce or manage the discomfort that side effects may cause.
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 people 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.
- Eat a healthy, well-balanced diet to keep energy levels up.
- 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 right away. Gradually increase the amount of activity you do each day.
Whether you have been diagnosed with vulvar or vaginal cancer, the treatments may affect the vulva.
People who have had surgery to 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 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.
Treatments for vulvar or vaginal cancer can affect the vagina. Radiation therapy can make the area tender during treatment and for a few weeks afterwards. Over time 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 penetration during sex painful. Surgery for vaginal cancer may also make the vagina shorter or narrower. Whether sexual 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
- It is important to keep the vagina open and supple, even if you don’t plan to be sexually active. As well as making sexual intercourse more comfortable, it makes it easier for your doctor to do regular cervical screening tests as well as vaginal examinations to check whether the cancer has come back.
- If cancer treatment has narrowed or shortened the vagina, you may be advised to use vaginal dilators to help keep the vagina open and prevent it from closing over.
- Vaginal dilators are tube-shaped devices made from plastic or silicone. They come in different sizes. Begin with the smallest and move to larger ones as each size becomes more comfortable.
- Make sure any soreness or inflammation has settled before you start using the first dilator. This is usually 2–6 weeks after treatment ends. Find a quiet, private place. Using a water-based lubricant, insert a dilator into the vagina and leave it there for 5–10 minutes. You will need to do this 3–5 times a week, usually for many months.
- Using dilators can be challenging. Your nurse, doctor or pelvic floor physiotherapist will give you more detailed instructions about when and how to start using them. They will also provide the dilators or let you know where to buy 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 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.
- Although dryness, shortening and narrowing of the vagina can make sexual intercourse uncomfortable or difficult, having sex regularly – if you are able to and want to – may help keep the vagina open.
- Extra lubrication may make sexual intercourse more comfortable. Choose a water-based or silicone-based gel without perfumes or colouring. If you don’t have a sexual partner or don’t feel emotionally or physically ready to have sexual intercourse, talk to your doctor about using dilators to keep your vagina open.
Radiation therapy and surgery to the vagina can cause bladder and bowel problems. Most are temporary, but sometimes 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 often or have a burning sensation when you pass urine. This is called cystitis. Try to drink plenty of water to make your urine less concentrated. Over-the-counter urinary alkalinisers (e.g. Ural) can help by making the urine less acidic. Your doctor may also prescribe medicine to treat cystitis.
Difficulty urinating – After surgery to the genital area, your urine may spray in different directions or off to one side. This can be messy and frustrating. It may help to sit down towards the back of the toilet seat or adjust your position to direct the flow of urine. 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.
Urinary incontinence – Incontinence is when urine leaks from your bladder without your control. Bladder control may change after surgery or radiation therapy to the vagina. Some people 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 the Continence Foundation of Australia or call them on 1800 33 00 66.
Changed bowel movements – After surgery or radiation therapy, some people 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. Try using a footstool when opening your bowels. This mimics a squat position, which is the natural position for going to the toilet as it lengthens and loosens the pelvic floor muscles. Avoid straining to empty your bowels as this weakens the pelvic floor muscles.
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 is a swelling of part of the body. After treatment for vulvar cancer, lymphoedema usually affects a leg or the genitals. Sometimes, the swelling can take months or years to develop. The risk of damage to the lymph nodes or vessels increases for people who have both radiation therapy and surgery, but some people who are at risk never develop lymphoedema. Although it may be permanent, lymphoedema can usually be managed. Talk to a lymphoedema professional about tailoring a treatment plan for you.
Tips for managing lymphoedema
- Look for signs of lymphoedema and see a lymphoedema practitioner as soon as they appear. Early treatment avoids 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.
- Keep your skin clean and moisturised. Clip and care for your toenails.
- 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 or genitals are red, swollen or hot, let your doctor or nurse know as soon as possible.
If you have not yet been through menopause, some treatments for vulvar cancer can cause early 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 the hormone 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 symptoms
- Talk to your doctor about the benefits and risks of menopause hormone therapy (MHT, previously called hormone replacement therapy or HRT). MHT may increase the risk of some diseases. If you were already on MHT when cancer was diagnosed, there should be no need to stop taking it as vaginal cancer is not caused or affected by hormones.
- Ask your doctor about having a bone density test or taking medicine to prevent your bones from becoming weak.
- Regular weight-bearing exercise will help keep your bones strong. Osteoporosis Australia has more information or call them on 1800 242 141.
- Meditation and relaxation techniques can help reduce stress and lessen symptoms. Call Cancer Council 13 11 20 for free relaxation and meditation recordings.
- Cognitive behaviour therapy has been shown to help people manage menopause symptoms such as anxiety, stress and insomnia. Ask your GP for more information.
Vulvar cancer can affect your sexuality in physical and emotional ways. Sometimes radiation therapy or surgery to the pelvic area can affect nerves and tissue in this area, causing scarring, narrowing of the vagina, swelling and soreness. The experience of having cancer can also reduce your desire for sex (libido).
Take time to explore and touch your body to find out what feels good. Many people are able to have sexual intercourse after treatment and some can still experience an orgasm even if their clitoris has been removed. Others may have to try different sexual positions or activities. 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. A sex therapist or psychologist can help you adjust to changes and help you find new ways to express intimacy and enjoy sex.
Tips for managing sexual changes
- Give yourself time to get used to any physical changes.
- Talk about your feelings with your sexual partner, if you have one. Let them know if you don’t feel like having sex, or if you find intercourse uncomfortable.
- Talk to your doctor about ways to manage side effects that change your sex life.
- Explore other ways to climax, such as caressing the breasts, inner thighs, feet or buttocks.
- See ‘Intimacy and sexuality for women with gynaecological cancer – starting a conversation’ for more tips.
This information is reviewed by
This information was last reviewed October 2020 by the following expert content reviewers: A/Prof Alison Brand, Director, Gynaecological Oncology, Westmead Hospital, NSW; Ellen Barlow, Clinical Nurse Consultant, Royal Hospital for Women, NSW; Jane Conroy-Wright, Consumer; Rebecca James, 13 11 20 Consultant, Cancer Council SA; Suparna Karpe, Clinical Psychologist, Gynaecological Oncology, Westmead Hospital, NSW; Dr Pearly Khaw, Consultant Radiation Oncologist, Peter MacCallum Cancer Centre, VIC; Sally McCoull, Consumer; A/Prof Orla McNally, Gynaecological Oncologist and Director, Oncology/Dysplasia, The Royal Women’s Hospital, and Director, Gynaecology Tumour Stream, Victorian Comprehensive Cancer Centre, VIC; Haley McNamara, Social Worker and Project Manager, Care at End of Life Project, Queensland Health, QLD; Tamara Wraith, Senior Clinician – Physiotherapy, The Royal Women’s Hospital, VIC.