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Lymphoedema is a long-term (chronic) condition that causes swelling in the body's tissues. It can affect any part of the body, but usually develops in the arms or legs.

It develops when the lymphatic system does not work properly. The lymphatic system is a network of channels and glands throughout the body that helps fight infection and remove excess fluid.

It's important that lymphoedema is identified and treated as soon as possible. If it is not treated, it can get worse.

Symptoms of lymphoedema

The main symptom of lymphoedema is swelling in all or part of a limb or another part of the body. It can be difficult to fit into clothes, and jewellery and watches can feel tight.

At first, the swelling may be soft and easy to push in, leaving a dent, and may come and go. It may get worse during the day and go down overnight. Without treatment, it will usually become more severe and persistent.

Other symptoms in an affected body part can include:

• an aching, heavy feeling
• difficulty with movement
• repeated skin infections
• developing hard, tight or thickened skin
• folds developing in the skin
• wart-like growths developing on the skin
• fluid leaking through the skin

Signs of lymphoedema in the head and neck may include swelling or heaviness in the face, mouth or throat, and problems with swallowing and speech.

What causes lymphoedema?

Lymphoedema is caused by a problem with the lymphatic system, a network of vessels and glands spread throughout the body. The main functions of the lymphatic system are helping fight infection and draining excess fluid from tissues.

There are 2 main types of lymphoedema:

• primary lymphoedema – caused by faulty genes that affect the development of the lymphatic system; it can develop at any age, but usually starts during infancy, adolescence, or early adulthood
• secondary lymphoedema – caused by damage to the lymphatic system or problems with the movement and drainage of fluid in the lymphatic system; it can be the result of a cancer treatment, an infection, injury, inflammation of the limb, or a lack of limb movement

Read more about the causes of lymphoedema

Who's affected

Lymphoedema is thought to affect more than 200,000 people in the UK. Primary lymphoedema is rare and secondary lymphoedema is much more common.

Secondary lymphoedema often affects people with cancers that involve the lymph system or who've had treatment to the lymph nodes, such as breast cancer, vulval cancer, penile cancer, and head and neck cancer.

People who have treatment for skin cancer (melanoma) in the lymph nodes in the groin can also get lymphoedema.

Your treatment team will let you know if you're at risk of getting lymphoedema from your cancer or cancer treatment. Any planned treatment you have will try to avoid causing damage to your lymph nodes.

Diagnosing lymphoedema

See a GP if you experience the typical symptoms of lymphoedema, such as swelling in your arms and legs. They may refer you to a specialist lymphoedema treatment centre for further assessment.

In many cases, lymphoedema can be diagnosed from your symptoms and medical history, and by examining the affected body part and measuring the distance around it to see if it's enlarged.

Occasionally, further tests may be necessary to assess and monitor your condition.

If you're being treated for cancer and are at risk of developing lymphoedema, you'll be monitored for it afterwards.

Read more about diagnosing lymphoedema

Treating lymphoedema

There's no cure for lymphoedema, but it's usually possible to control the main symptoms using techniques to minimise fluid build-up and stimulate the flow of fluid through the lymphatic system.

These include wearing compression garments, taking good care of your skin, moving and exercising regularly, having a healthy diet and lifestyle, and using specialised massage techniques.

Read more about treating lymphoedema and preventing lymphoedema.

Complications

Cellulitis is the most common complication of lymphoedema. It can also have a significant psychological impact. It can be serious if it's not treated quickly.

Cellulitis

If you have lymphoedema, the build-up of fluid in your tissues makes you more vulnerable to infection.

Cellulitis is a bacterial infection of the deep layer of skin (dermis) that often affects people with lymphoedema. Cellulitis can also sometimes cause lymphoedema.

Symptoms of cellulitis can include:

• redness and a feeling of heat in the skin – this may be harder to see on brown and black skin
• pain and increased swelling in the affected area
• a high temperature
• chills

Antibiotics taken by mouth (orally) can usually be used to treat cellulitis, although severe cases may need to be treated in hospital with antibiotics given directly into a vein (intravenously).

Psychological impact

Living with a long-term condition that affects your appearance can cause a great deal of distress and lead to periods of depression.

You may be depressed if you've been feeling down for the past few months and no longer find pleasure in things you usually enjoy.

If this is the case, talk to a GP or a member of your lymphoedema treatment team. Effective treatments are available for depression.

Talking to other people with lymphoedema can be reassuring and decrease feelings of isolation, stress and anxiety.

If you continue with your treatment plan, your symptoms should eventually become less noticeable.

 Causes Lymphoedema 

There are 2 types of lymphoedema – primary and secondary lymphoedema – which have different causes.

Primary lymphoedema

Primary lymphoedema is caused by alterations (mutations) in genes responsible for the development of the lymphatic system.

The faulty genes cause the parts of the lymphatic system responsible for draining fluid to not develop properly or not work as they should.

Primary lymphoedema often runs in families, although not every child born to someone with the condition will develop it themselves.

Secondary lymphoedema

Secondary lymphoedema develops in people who previously had a normal lymphatic system that then becomes damaged.

It can have a number of different causes.

Surgery for cancer

Treatment for cancer can involve surgery to remove sections of the lymphatic system.

The surgeon will try to limit damage to your lymphatic system, although this is not always possible.

There's a particular risk of lymphoedema occurring after treatment for any cancer where lymph glands are removed.

Some of the more common cancers where this happens are:

• breast cancer
• head and neck cancer
• skin cancer (melanoma)
• gynaecological cancers – such as cervical cancer and vulval cancer
• genitourinary cancers – such as prostate cancer or penile cancer
• lymphoma
• advancer cancers

Radiotherapy

Radiotherapy uses controlled doses of high energy (radiation) to destroy cancerous tissue, but it can also damage healthy tissue.

If radiotherapy is needed to destroy cancerous cells in your lymphatic system, there's a risk that the lymphatic system could become permanently damaged and unable to drain fluid properly.

Infections

An infection, such as cellulitis, can sometimes cause lymphoedema. Severe cellulitis can damage the tissue around the lymphatic system, causing it to become scarred.

Filariasis can also cause lymphoedema. Lymphatic filariasis is a parasitic disease caused by microscopic, thread-like worms.

The adult worms only live in the human lymphatic system and block lymph drainage. It's a common cause of lymphoedema worldwide, but is not generally a risk in the UK.

Inflammation

Medical conditions that cause tissue to become red and swollen can also permanently damage the lymphatic system.

Conditions that can cause lymphoedema include:

• psoriasis
• atopic eczema

Venous diseases

Diseases that affect the flow of blood through the veins can cause lymphoedema in some people.

The abnormal or damaged veins can cause fluid to overflow from the veins into the tissue spaces.

This overwhelms and eventually exhausts the parts of the lymphatic system responsible for draining this fluid.

Some venous diseases that can lead to lymphoedema include:

• DVT (deep vein thrombosis) – a blood clot in 1 of the deep veins in the body
• swollen and enlarged veins (varicose veins) – where poor drainage of blood in the veins causes higher vein pressure and more fluid overflowing into the surrounding tissues

Obesity

Obesity is another possible cause of secondary lymphoedema.

People who are obese, particularly those who are severely obese, have an increased risk of developing swollen body parts.

It's not clear exactly why this is, but it's been suggested that the extra fatty tissue affects the lymphatic channels in some way, reducing the flow of fluid through them.

Check if you are obese on the BMI healthy weight calculator.

In these cases, weight loss is an important part of treatment and even just starting to lose weight can make a big difference to the swelling.

Trauma and injury

In a small number of cases, lymphoedema can be caused by an accidental injury to the lymphatic system.

For example, it can sometimes occur after a road traffic accident where there's extensive bruising or soft tissue loss.

Immobility

Movement and exercise help lymph drainage because muscle activity surrounding the lymphatic vessels massages fluid into and along them.

Reduced movement can therefore lead to lymphoedema because the fluid in the lymphatic system does not get moved along.

For example, people who have limited mobility for a long period of time as a result of an illness, nerve damage or arthritis may be at risk of lymphoedema.

 Diagnosis Lymphoedema 

See a GP if you have symptoms of lymphoedema. If you're being treated for cancer and are at risk of developing lymphoedema, you'll be monitored for the condition afterwards.

In many cases, it's possible to diagnose lymphoedema by:

• asking about your symptoms and medical history
• examining the affected limb and measuring the distance around it to see if it's enlarged

The GP may refer you to a specialist lymphoedema treatment centre for further assessment.

Early diagnosis and treatment can help prevent the condition from getting worse.

Further tests

In most cases, further tests are not necessary, but they may occasionally be used to assess and monitor your condition.

Measuring limb volume

In some cases, tests to calculate the volume of an affected limb may be carried out.

These may include:

• using a tape measure – to measure the circumference of the limb at certain intervals to calculate its volume
• water displacement – where the affected limb is placed in a tank of water and the amount of water that's displaced is measured to calculate the volume of the limb
• perometry – where infrared light is used to measure the outline of an affected limb and calculate its volume

Bioimpedance testing

During a bioimpedance test, small metallic discs called electrodes are placed on different parts of your body.

The electrodes release a small, painless electric charge that's measured using a handheld device. Changes in the strength of the current can indicate the presence of fluid in your tissue.

Imaging tests

Imaging tests may also be used if there's uncertainty around the diagnosis or to rule out other causes of swelling.

These include:

• a lymphoscintigram – where you're injected with a radioactive dye that can be tracked by a scanner; this shows how the dye moves through your lymphatic system and can check for any blockages
• a MRI scan – a strong magnetic field and radio waves are used to produce detailed images of the inside of your body
• an ultrasound scan – high-frequency sound waves are used to create an image of the inside of your body
• a CT scan – X-rays and a computer create detailed images of the lymph nodes

These scans can be used to create a clearer picture of the affected tissue.

 Treatment Lymphoedema 

The recommended treatment for lymphoedema is decongestive lymphatic therapy (DLT).

DLT is not a cure for lymphoedema, but it can help control the symptoms. Although it takes time and effort, the treatment can be used to bring lymphoedema under control.

Decongestive lymphatic therapy (DLT)

There are 4 components to DLT:

• compression bandages – to complement exercise by moving fluid out of the affected limb and minimise further build-up
• skin care – to keep the skin in good condition and reduce the chances of infection
• exercises – to use muscles in the affected limb to improve lymph drainage
• specialised massage techniques – known as manual lymphatic drainage (MLD); this stimulates the flow of fluid in the lymphatic system and reduces swelling

DLT is an intensive phase of therapy, during which you may receive daily treatment for several weeks to help reduce the volume of the affected body part.

This is followed by a second phase called the maintenance phase. You'll be encouraged to take over your care using simple self-massage techniques, wearing compression garments, and continuing to exercise and look after your skin.

This treatment phase aims to maintain the reduced size of the affected body part.

You'll have reviews every few months to check how your treatment is progressing.

Compression bandages and garments

Unlike blood circulation, the lymphatic system has no central pump, such as the heart, to move fluid to the lymph glands.

Instead, it uses the massaging effect of surrounding muscles to move the fluid. This is why exercise is important.

Compression bandages or garments, such as sleeves, gloves, stockings or tights, fitted over affected limbs act as a counterforce to muscles.

This stimulates more effective lymph drainage. The combination of exercise and compression encourages the fluid to move out of the affected limb.

Compression garments may also be applied after a massage session to prevent fluid accumulating in the limb again.

Velcro wraps may be used instead of bandages or compression garments. These are easier to apply yourself.

You'll be taught how to correctly apply compression garments or Velcro wraps so you can continue using them during the maintenance period.

Compression bandages or garments may not be suitable for some people, such as those with arterial problems in their legs.

Skin care

It's important to take good care of your skin to reduce your risk of developing an infection, such as cellulitis.

See preventing lymphoedema for more skin care advice.

Movement and exercises

Your lymphoedema care team will help devise an exercise and movement plan designed to strengthen and stimulate the muscles involved in lymph drainage.

They'll also help you lose weight if you're overweight. Your exercise plan will be tailored to your requirements and ability.

Your plan may involve specific exercises, depending on the body part affected, as well as gentle activities that involve the whole body, such as swimming, cycling and walking. You'll also usually be advised to elevate the affected body part whenever possible.

Massage

To begin with, you may receive specialised massages called manual lymphatic drainage (MLD) – usually carried out by a specialist therapist – to move fluid from the swollen areas into working lymph nodes, where it can be drained.

Your lymphoedema therapist will also teach you a range of simpler massage techniques that you or your carer can use during the maintenance phase of treatment to help keep the swelling down. These self massage techniques are known as simple lymphatic drainage (SLD).

Surgery

In a small number of cases, surgery may be used to treat lymphoedema. There are 2 main types of surgery that may be useful for the condition:

• removal of fat from the affected limb (liposuction)
• restoration of the flow of fluid around the affected section of the lymphatic system – for example, by connecting the lymphatic system to nearby blood vessels (lymphaticovenular anastomosis)

These treatments may help reduce the size of areas of the body affected by lymphoedema in some people. They're only available in some specialist centres.

Liposuction

The accumulation of fat is a significant feature of lymphoedema swelling. Liposuction is where a thin tube is inserted through small cuts (incisions) in the skin to suck fat out of tissue.

It can be used to remove excess fat from an affected limb to help reduce its size.

After surgery, you'll have to wear a compression garment on the affected limb for the rest of your life to help keep the swelling down.

 Prevention Lymphoedema 

It's not possible to completely prevent lymphoedema, but the following advice may help reduce your chances of developing it.

If you already have lymphoedema, this advice may stop it getting worse.

Skin care

The part of your body affected by lymphoedema is more vulnerable to infection of the build-up of fluid within the tissues.

Any cuts in your skin can allow bacteria to enter your body and may quickly develop into an infection.

Skin infections can also damage your lymphatic system and cause lymphoedema to develop.

You can reduce your chances of developing skin infections by:

• not having injections or blood pressure readings in the affected area whenever possible
• treating cuts and scratches immediately with an antiseptic cream
• using insect repellents to prevent insect bites
• keeping your skin clean and dry, and using an alternative to soap, such as an E45 wash
• moisturising the skin daily to keep it supple – a GP can prescribe a suitable cream
• avoiding very hot baths and showers – the heat from saunas, steam rooms and sun beds may increase the swelling
• using sunscreen with a high sun protection factor (SPF) to prevent sunburn
• wearing gloves for gardening and household tasks to avoid cuts if your upper limbs are affected
• using anti-fungal powder to prevent fungal infections in your skin or feet if your lower limbs are affected
• cutting your nails with nail clippers
• seeing a chiropodist for foot and nail care – make sure you tell them you have lymphoedema
• wearing shoes that fit correctly and provide support on the top of your feet and avoiding going barefoot if your lower limbs are affected
• using an electric razor if you need to shave to reduce the risk of cutting yourself
• not wearing tight fitting clothes or jewellery
• following careful mouth and dental hygiene if you have lymphoedema in your head and neck

Contact a GP as soon as possible if you develop symptoms of a possible skin infection. These symptoms may include redness or a feeling of heat in the skin.

Healthy lifestyle

Adopting a healthy lifestyle may help reduce your risk of developing lymphoedema, and may also help control the condition if you already have it.

This includes:

• eating a healthy, balanced diet
• maintaining a healthy weight – use the BMI healthy weight calculator to work out whether you're a healthy weight for your height
• exercising regularly