What is lymphoedema?

Lymphoedema is a type of chronic (ongoing) swelling that affects the soft tissues in your body.

It occurs when your lymph nodes or vessels, which make up your lymphatic system, become blocked or damaged. This damage or blockage causes a build-up of fluid in your body's soft tissues.

Lymphoedema most commonly occurs in your arms or legs, but it can also be seen in the genital area, chest, head or neck.

What is the lymphatic system?

The lymphatic system is part of your body's immune system. It helps to fight infections and protect your body from disease.

The lymphatic system is made up of a network of vessels throughout your body that carry fluid called lymph. The lymph fluid passes through your lymph nodes, which filter out harmful substances.

What are the symptoms of lymphoedema?

The main signs and symptoms of lymphoedema are:

• swelling in your arm, leg or other affected area — clothes, shoes or jewellery may seem tighter than usual
• a feeling of heaviness or tightness in the affected area
• aching and discomfort in the affected area
• not being able to fully move your affected limb
• pitting of the skin (gently pushing on your skin leaves an indent)
• a toughening or thickening of the skin

Many people find that the swelling gets worse:

• through the day — then gets better overnight
• in the heat
• with overuse of the limb
• with prolonged inactivity

What causes lymphoedema?

The 2 main types of lymphoedema are:

1. primary lymphoedema
2. secondary lymphoedema

Each type of lymphoedema has a different cause.

Primary lymphoedema is rare, while secondary lymphoedema is more common.

Lymphoedema can also be a mix of the primary and secondary types.

Primary lymphoedema

Primary lymphoedema can be due to a genetic condition. People affected by this form of lymphoedema are born with a problem with their lymphatic system.

While it can occur at any age, primary lymphoedema usually develops in early childhood, adolescence or early adulthood.

Secondary lymphoedema

Secondary lymphoedema is caused by damage to, or blockage of, your lymphatic system due to:

• surgery for another condition
• radiotherapy
• trauma or tissue damage
• infection (filariasis)
• cancer
• obesity

Lymphoedema from cancer treatment

Lymphoedema can sometimes develop as a side effect of cancer treatment.

Surgery or radiotherapy for breast cancer can cause secondary lymphoedema in your arm and chest.

Surgery or radiotherapy for bowel cancer, prostate cancer or cancer of the reproductive system can cause secondary lymphoedema in the legs or groin area.

Lymphoedema can also occur in people with melanoma if lymph nodes have been removed as part of the treatment.

Lymphoedema may occur immediately after your lymphatic system has been damaged or blocked, or it may develop years later.

When should I see my doctor?

If you notice any symptoms of lymphoedema, you should make an appointment to see your doctor.

If you have been diagnosed with lymphoedema and notice signs of infection (such as pain, redness, swelling) or if your symptoms suddenly get worse, see your doctor as soon as possible.

How is lymphoedema diagnosed?

Your doctor will ask about your symptoms and general health. They will examine any parts of your body that are affected, including:

• comparing them with the opposite side (left and right)
• measuring them to see if there is any swelling
• checking your skin for any pitting, swelling or skin damage

You might also need to have some tests to:

• confirm the diagnosis
• assess the extent of the lymphoedema
• work out the cause

Lymphoedema may be:

• mild — where no swelling is noticeable
• moderate — where pitting of the skin is seen
• severe — where the skin becomes hard or thick and fatty

How is lymphoedema treated?

If a diagnosis of lymphoedema is made, your doctor may refer you to a specialist lymphoedema centre or clinic for treatment.

While lymphoedema cannot be cured, it may be possible to keep it under control using complex decongestive therapy (CDT). This treatment involves several steps:

• Manual lymphatic drainage — having specialised massage treatment, such as lymphatic drainage massage.
• Compression bandaging — graded multilayer compression bandaging is applied to the affected area.
• Tailored compression garments — wearing these can help with swelling.
• Exercise — moving about regularly and doing special exercises, such as walking or resistance training.
• Skin care — keeping your skin in good condition and reducing the chance of infection.

The sooner treatment for lymphoedema starts, the more successful it's likely to be in keeping the condition under control. Surgery may be an option if the lymphoedema cannot be managed with this therapy.

Living with lymphoedema

Lymphoedema can affect more than just your body — it may impact your confidence, mood and daily life. Visible swelling or reduced movement can cause frustration or changes in self-image, and managing the condition often means adjusting routines and social activities.

Support from healthcare professionals, counselling or peer groups can help you cope and stay connected. With the right strategies, many people adapt well and continue to live active, fulfilling lives.

What are the complications of lymphoedema?

Cellulitis (a bacterial skin infection) is a common complication of lymphoedema.

Lymphangitis (infection of the lymph vessels) can also occur.

These steps can help reduce your risk of skin infections:

• Keep your skin clean by washing with pH-neutral soap.
• Avoid scented soaps and washes.
• Use a moisturiser every day to keep your skin soft and hydrated.
• Avoid sunburn by applying sunscreen and wearing protective clothing.
• Use insect repellent to protect against insect bites and stings.

Reduce your risk of infection from cuts and scrapes:

• Wear gloves while gardening, washing up and doing housework.
• Avoid walking barefoot.
• Use antiseptic on any cuts.
• See your doctor urgently if a cut looks infected.
• Cut your nails with clippers, not scissors.
• If you shave, use an electric razor.

If a skin infection develops, it's important to visit your doctor as soon as possible to see if you need treatment with antibiotics or antifungals.

Anxiety and depression are also common in people with lymphoedema. See your doctor if you are feeling down — support and treatment are available.

Can lymphoedema be prevented?

If you have had surgery, radiotherapy or an injury, there are a few things you can do to reduce your risk of developing lymphoedema.

• Move your affected arm or leg normally if you can (unless your doctor has advised you not to).
• Avoid putting pressure on the affected area, such as a tight bra strap or underwear with tight elastic.
• Look after your skin to help prevent skin infections.
• Keep active, start any exercise slowly and build up gradually.
• Maintain a healthy weight and eat a healthy diet.

Resources and support

The Australian Lymphology Association provides information about lymphoedema. The association can also put you in touch with a local support group.

Cancer Council Australia and Cancer Australia have information about secondary lymphoedema.

Beyond Blue has mental health information and support — you can call a counsellor on 1300 22 4636 or chat to a counsellor online.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with you 24 hours a day, 7 days a week.