Lymphoedema

What is Lymphoedema?

Lymphoedema is a long-term condition that causes swelling in the body's tissues, most often in an arm or leg. It happens when the lymphatic system, which normally drains excess fluid away, isn't working properly.

Symptoms of lymphoedema

The main symptom is swelling in all or part of a limb, or another part of the body. Clothing, shoes or jewellery may start to feel tighter than usual, even before you notice any obvious swelling.

At first, the swelling may be soft, come and go, and get worse during the day before easing overnight. Without treatment, it usually becomes more severe and permanent over time.

Other symptoms in the affected area can include:

• an aching or heavy feeling
• difficulty moving the affected limb
• skin that feels tight, thickened or hard
• dry, flaky or rough skin
• repeated skin infections
• folds developing in the skin, or wart-like growths
• fluid leaking through the skin (lymphorrhoea) in more severe cases

If it affects your head or neck, you may notice swelling or heaviness in your face, mouth or throat, and problems with swallowing or speech.

Causes of lymphoedema and who is at risk

Lymphoedema happens when the lymphatic system, a network of vessels and glands that helps fight infection and drain excess fluid, can't keep up with the fluid in an area of your body.

There are two main types, based on what's causing it:

• primary lymphoedema, caused by faulty genes affecting how the lymphatic system develops, which can appear at any age but often starts in infancy, adolescence or early adulthood
• secondary lymphoedema, caused by damage to an otherwise normal lymphatic system, which is much more common.

Secondary lymphoedema can be caused by:

• surgery to remove lymph nodes, particularly as part of cancer treatment such as breast, prostate, gynaecological, head and neck, or skin cancer
• radiotherapy to the lymph nodes, which can cause scarring that blocks lymph flow
• a cancer that spreads to, or presses on, the lymph nodes or vessels
• injury, infection or inflammation affecting the limb
• reduced mobility, as muscle movement normally helps lymph fluid drain
• problems with your veins, such as varicose veins or a previous deep vein thrombosis
• being overweight

Your risk is higher if you've had a large group of lymph nodes removed or had both surgery and radiotherapy to the same area.

Are there different types of lymphoedema?

As well as being primary or secondary, lymphoedema tends to progress through stages if it isn't treated. Early on, the swelling is often soft and may reduce if you raise the affected limb. Over time, without treatment, the tissue becomes firmer and more fixed and swelling no longer goes down with rest or elevation.

Lymphoedema is thought to affect somewhere between 200,000 and 450,000 people in the UK, depending on which study you look at. Primary lymphoedema is rare, secondary lymphoedema is much more common.

How lymphoedema is diagnosed?

See a GP if you have typical symptoms of lymphoedema such as swelling in an arm or leg. In many cases, it can be diagnosed from your symptoms and medical history, along with an examination of the affected area and measurements to check whether it's enlarged compared with the other side.

You may be referred to a lymphoedema specialist, such as a specialist nurse, physiotherapist or doctor, for a fuller assessment. They'll ask about your medical history, check your skin, assess the size and texture of the swelling, and check your movement and everyday function. Occasionally, further tests are needed, either to confirm the diagnosis or to rule out other causes of swelling, such as a blood clot.

How lymphoedema is treated?

There's no cure for lymphoedema, but treatment can control the swelling and reduce the risk of complications. The main approach is called decongestive lymphatic therapy (DLT), which combines several elements:

• skin care, to keep the skin healthy and reduce the risk of infection
• compression, using bandages or fitted garments such as sleeves or stockings
• exercise and movement, since muscle activity helps lymph fluid drain
• specialised massage techniques, known as manual lymphatic drainage (MLD), which you may later be taught to do yourself (self lymphatic drainage)

Treatment often starts with an intensive phase, sometimes involving daily therapy for a few weeks, followed by a maintenance phase where you take over much of your own care, with regular reviews to check progress.

Surgery is only used in a small number of cases, usually at specialist centres. Options include liposuction, to remove excess fat from the affected limb, or a procedure that reconnects the lymphatic system to nearby blood vessels to help fluid drain (lymphaticovenular anastomosis). If you have liposuction, you'll usually need to wear a compression garment on the limb for life to help keep the swelling down.

When to see a doctor

See a GP if you have swelling in an arm, leg or elsewhere that doesn't go away, especially if it's getting worse.

Get medical advice urgently if:

• your affected limb becomes red, hot, sore or suddenly more swollen, as this can be a sign of a skin infection called cellulitis
• you have sudden swelling in one leg that's noticeably worse than the other, as this needs to be checked for a possible blood clot (deep vein thrombosis)
• fluid starts leaking through your skin (lymphorrhoea)