Overview

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 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
• hard, tight skin
• folds developing in the skin
• wart-like growths developing on the skin
• fluid leaking through the skin

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 an infection, injury, cancer treatment, inflammation of the limb, or a lack of limb movement

Who's affected

Lymphoedema is thought to affect more than 200,000 people in the UK. Primary lymphoedema is rare and is thought to affect around 1 in every 6,000 people. Secondary lymphoedema is much more common.

Secondary lymphoedema affects around 2 in 10 people with breast cancer, and 5 in 10 women with vulval cancer. About 3 in every 10 people with penile cancer get lymphoedema.

People who have treatment for 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.

Cancer Research UK has more information about lymphoedema and cancer.

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.

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.

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
• pain and increased swelling in the affected area
• a high temperature (fever)
• 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.

The Lymphoedema Support Network provides information and advice, and can put you in touch with a support group in your area.

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

Who can get it

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. Some of the most common causes are explained below.

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 isn't 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
• melanoma skin cancer
• gynaecological cancers – such as cervical cancer and vulval cancer
• genitourinary cancers – such as prostate cancer or penile cancer

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 is another infectious cause of 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 it isn't 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:

• rheumatoid arthritis
• 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:

• deep vein thrombosis (DVT) – a blood clot in one 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 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

Treatment

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.

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.

Skin care

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

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 limb exercises, as well as gentle activities that involve the whole body, such as swimming, cycling and walking.

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 three main types of surgery that may be useful for the condition:

• removal of sections of excess skin and underlying tissue (debulking)
• 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.

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 day and night for at least a year to help keep the swelling down.

Prevention