Managing side effects

Wednesday 1 October, 2014

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On this page: Shortening and narrowing of the vagina | Changes to your body | Tiredness | Kayleen's story | Bowel and bladder problems | Skin redness and soreness | Lymphoedema | Menopause | Infertility | Osteoporosis | 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. 

Shortening and narrowing of the vagina

Treatments for vaginal cancer can affect the vagina.

  • Radiotherapy
    This can make the pelvic area tender during the course of radiotherapy and for a few weeks after it ends. In the long term this irritation can leave scarring, which makes the vagina narrower and less flexible.
  • Surgery
    This may cause scar tissue to form around the outside of the vulva, narrowing the entrance to the vagina. This can make intercourse painful.

You may be advised to use a vaginal dilator to help keep the vaginal walls open and supple. A dilator is shaped like a tampon and is made from plastic or rubber. Used with a lubricant, it is usually inserted into the vagina for up to five minutes daily or every second day. 

Using the dilator may keep the vagina from closing over, and allow your doctor to do a vaginal examination at follow-up visits to check for a recurrence of cancer. Regular use of the dilator can also make vaginal sex more comfortable. Your nurse or doctor can give you more detailed instructions about how to use it.

Ask your doctor if applying a hormone cream to your vagina will help. Creams are available on prescription.

Although shortening and narrowing of the vagina can make sexual intercourse uncomfortable or difficult, having intercourse regularly – if you are able to – may help prevent the vagina from narrowing. Using a water 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, you should talk to your doctor about ways to keep your vagina open.

Changes to your body

Women who have had surgery to their genital region have different feelings about looking at changes to their genital area.

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 when they look for the first time. A nurse can explain the changes to the vulvar area and can offer professional support and advice. Whoever you choose, make sure it is someone you trust and you can talk to openly about your feelings.

"I asked my husband to take pictures of my vulva so we could see it and talk about what happened. This helped him understand what I’d been through." – Trudy

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.

Tiredness

It is common to feel tired or fatigued during and after treatment. This is not only a side effect of the treatments. Travelling to treatment and dealing with your emotions can also cause fatigue.

Your tiredness may continue for a while after treatment has finished. Some women find it takes them a few years to feel well again. You may need to plan your activities so you can rest regularly. It can also be a good idea to ask family and friends for help and support. 

For free printed information on life after cancer, call Cancer Council 13 11 20 and ask for a copy of Living Well After Cancer.

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 sex. 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 a sensitive issue for me.

"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 didn’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."

Click here to tell your cancer story.

Bowel and bladder problems

Radiotherapy can cause bladder and bowel problems. Most side effects are temporary, but for some women, the changes are permanent. Talk to your doctor for more information.

Cystitis

Inflammation to the lining of the bladder can make you feel like you want to pass urine frequently or give you a burning sensation when you pass urine. This is called cystitis. Try to drink plenty of water to make your urine less concentrated. Your doctor may be able to prescribe medication to help make you more comfortable.

Bleeding

The blood vessels in the bowel and bladder can become more fragile after radiotherapy treatment and this can cause blood to appear in the urine or stools. 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 the appropriate treatment can be given.

Changed bowel movements

Some women have constipation or diarrhoea after treatment. You may also feel some pain in your abdomen. Your doctor may be able to prescribe medication to ease your side effects. Drinking more water may also help. Ask the hospital dietitian or nurse for advice.

Incontinence

Accidental or involuntary loss of urine is called incontinence. After treatment, 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, or call the Continence Foundation of Australia on 1800 33 00 66 or visit www.continence.org.au.

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. You can also buy a reusable silicone funnel to direct the urine. Over time, the urine stream should flow in a more manageable way.

"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

Skin redness and soreness

Radiotherapy may make your skin dry and itchy in the treatment area. Your skin may temporarily look red, tanned or sunburnt.

Use lukewarm water to wash your genital area and gently pat it dry with a towel. Avoid using any soaps, creams, talcum powder or perfumes on the treatment area without your doctor’s approval.

Your radiotherapy nurse can give you more advice about looking after your sensitive skin. 

Lymphoedema

Lymphoedema is a swelling of part of the body, usually a limb such as the leg. It can occur if your lymph nodes have been removed or damaged by radiotherapy. Lymph fluid may be unable to drain properly, which can cause swelling. Sometimes the swelling can take months or years to develop, while some people who are at risk never develop lymphoedema. 

Reducing the risk of lymphoedema
  • Make an appointment with a lymphoedema specialist. Visit the Australasian Lymphology Association website, www.lymphoedema.org.au, to find a practitioner and to learn more about lymphoedema.
  • Reduce the risk of infection by keeping your skin moist and caring for your nails.
  • Avoid cuts, burns, insect bites, sunburn and injections in your legs.
  • Talk to your nurse or lymphoedema specialist about wearing special bandages, stockings or a compression garment to help move fluid.
  • Do leg exercises to help 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. Your hospital may have a lymphoedema specialist who can help you.

Menopause

If you have cancer of the vagina and have radiotherapy to the pelvis, your ovaries may stop producing hormones and you may go through menopause. During menopause, your periods will stop and you may have symptoms such as hot flushes, dry or itchy skin, mood swings, or loss of libido (interest in sex).

Treatment for vulvar cancer does not usually cause menopause. However, if you have your ovaries surgically removed, hormone production will stop and you will go through menopause.

Managing menopause
  • You can use oestrogen, contained in creams or pessaries, to relieve vaginal dryness. Moisturisers without oestrogen can also be used.
  • Extra lubrication may make intercourse more comfortable. To reduce irritation, choose a water or silicone-based gel without perfumes or colouring (e.g. Sylk™, pjur®, Astroglide®).
  • 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, you will need to weigh up the risks of continuing it.
  • Eat a healthy diet with lots of fresh fruits and vegetables, and wholegrains. Try to do some regular light exercise, if you are able. Ask your doctor for advice if you want to try any herbal remedies or diet modifications.

Infertility

If treatment causes you to go through menopause, this will mean you are no longer able to become pregnant. If this is a concern for you, talk to your doctor about your fertility and any options available to you before you start treatment. There may be some ways to preserve your fertility. To find out more, call Cancer Council 13 11 20 for a free copy of Fertility and Cancer.

Osteoporosis

Loss of oestrogen at menopause may also cause bones to weaken and break more easily. This is called osteoporosis.

Preventing osteoporosis
  • Eat three serves of calciumrich food daily (e.g. glass of milk, tub of yoghurt, slice of hard cheese).
  • Do regular weight-bearing exercise.
  • Get vitamin D from limited sun exposure; aim for a few minutes in the sun on most days of the week during summer, and 2–3 hours per week during winter. If you are concerned about your vitamin D, your GP can take a blood sample to check if your levels are deficient.
  • Ask your doctor about having a bone density test or taking medication to prevent your bones from becoming weak.
  • Avoid smoking. 
To find out more contact Osteoporosis Australia at www.osteoporosis.org.au or call 1800 242 141.

Key points

  • There are ways to reduce or manage discomfort caused by side effects.
  • 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.
  • You might feel tired during and after treatment. Plan to rest regularly and get support from a community nurse, family and friends, if possible.
  • 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. The urine stream will usually become more normal over time, and there are some techniques or tools (such as reusable funnels) that can assist.
  • If your skin is red and sore due to radiotherapy, use lukewarm water to wash your genitals and avoid using creams, perfumes or talcum powder.
  • 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 about this as soon as possible. 

Reviewed by: Prof Jonathan Carter, Head Gynaecologic Oncology, Chris O’Brien Lifehouse, Professor of Gynaecological Oncology, University of Sydney, and Head Gynaecologic Oncology, Royal Prince Alfred Hospital, NSW; Ellen Barlow, Gynaecological Oncology Clinical Nurse Consultant, Gynaecological Cancer Centre, The Royal Hospital for Women, NSW; Jason Bonifacio, Practice Manager/ Chief Radiation Therapist, St Vincent’s Clinic, Radiation Oncology Associates and Genesis Cancer Care, NSW; Wendy Cram, Consumer; Kim Hobbs, Social Worker, Gynaecology Oncology, Westmead Hospital, and Chair COSA Social Work Group, NSW; Lyndal Moore, Consumer; Pauline Tanner, Cancer Nurse Coordinator, Gynaecological Cancer, WA Cancer and Palliative Care Network, WA.
Updated: 01 Oct, 2014