Lymphoedema (lymphedema): symptoms, causes and treatment

The NHS says the main symptom 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, hard, tight or thickened skin, folds developing in the skin, wart-like growths and fluid leaking through the skin. The NHS says signs in the head and neck may include swelling or heaviness in the face, mouth or throat and problems with swallowing and speech.

The NHS says lymphoedema 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 says it is important that lymphoedema is identified and treated as soon as possible because, if it is not treated, it can get worse.

The NHS says it is thought to affect more than 200,000 people in the UK. Secondary lymphoedema often affects people with cancers that involve the lymph system or who have had treatment to the lymph nodes, such as breast cancer, vulval cancer, penile cancer and head and neck cancer.

The NHS says there is no cure for lymphoedema, but it is usually possible to control the main symptoms with techniques to minimise fluid build-up and stimulate the flow of fluid through the lymphatic system. The recommended treatment is decongestive lymphatic therapy (DLT), which is not a cure but can help bring lymphoedema under control.

DLT is an intensive phase, during which you may receive daily treatment for several weeks to reduce the volume of the affected body part, followed by a maintenance phase, where you are encouraged to take over your care with self-massage, compression garments, exercise and skin care. You will have reviews every few months.

The NHS says that in a small number of cases surgery may be used. There are 2 main types: removal of fat from the affected limb (liposuction), and restoring the flow of fluid around the affected section of the lymphatic system, for example by connecting the lymphatic system to nearby blood vessels. They are only available in some specialist centres. After liposuction, you will need to wear a compression garment on the affected limb for the rest of your life.

The NHS says there are 2 types. Primary lymphoedema is caused by faulty genes that affect the development of the lymphatic system. It can develop at any age but usually starts in infancy, adolescence or early adulthood, and often runs in families. Secondary lymphoedema develops in people who previously had a normal lymphatic system that becomes damaged or has problems with fluid movement.

The NHS says that if you have lymphoedema, the build-up of fluid makes you more vulnerable to infection, and cellulitis, a bacterial infection of the deep layer of skin, often affects people with lymphoedema. Symptoms can include redness and a feeling of heat in the skin (which may be harder to see on brown and black skin), pain and increased swelling, and a high temperature or feeling hot, cold or shivery.

Antibiotics taken by mouth can usually treat cellulitis, though severe cases may need antibiotics through a vein in hospital. The NHS says to contact a GP as soon as possible if you develop symptoms of a possible skin infection. It also says living with a long-term condition that affects appearance can cause distress and periods of depression, and to talk to a GP or lymphoedema team if you have felt low for the past few months.

The NHS says it is not possible to completely prevent lymphoedema, but advice can reduce your chances and may stop it getting worse if you already have it. Healthy lifestyle measures it lists include eating a healthy, balanced diet, maintaining a healthy weight and exercising regularly. There is no special lymphoedema diet in the sources used here.

• Avoid injections or blood pressure readings in the affected area where possible.

• Treat cuts and scratches immediately with an antiseptic cream, and use insect repellent.

• Keep skin clean and dry and moisturise daily; a GP can prescribe a suitable cream.

• Avoid very hot baths and showers, saunas, steam rooms and sun beds, which may increase swelling.

• Use high-SPF sunscreen and wear gloves for gardening and household tasks if your arms are affected.

• Wear well-fitting supportive shoes and avoid going barefoot if your legs are affected.

• Use an electric razor, and avoid tight clothing or jewellery.

The NHS says to see a GP if you experience the typical symptoms of lymphoedema, such as swelling in your arms and legs. In many cases lymphoedema can be diagnosed from your symptoms and medical history, by examining the affected body part and measuring the distance around it. If you are being treated for cancer and are at risk, you will be monitored for it afterwards.

On the NHS, a GP may refer you to a specialist lymphoedema treatment centre for assessment and for decongestive lymphatic therapy. People who have had cancer treatment are monitored by their treatment team.

Private lymphoedema therapists and compression garment fitters also exist. If you use one, check that they are trained in lymphatic therapy and ask how your care will be coordinated with your NHS team.