Symptoms and diagnosis of lymphoedema

Diagnosing lymphoedema early will help to manage symptoms and control swelling more easily. The symptoms of early lymphoedema include:

  • swelling of the limb affected
  • change in sensation (the limb or area may feel heavy, tight, full or stiff)
  • skin changes
  • aching

Symptoms vary depending on whether lymphoedema is mild, moderate or severe. In early lymphoedema, the swelling may not be very noticeable, but pressure might leave a mark or indentation on the skin. In later stages, the skin often hardens and there may be more complex skin problems. Severe lymphoedema may interfere with your ability to do everyday things.

Treatment can improve lymphoedema and the earlier it’s started the more likely it is to be successful. If you notice any swelling or feeling of tightness in a limb, tell your doctor or specialist nurse. They’ll be able to examine the area and do tests to check for lymphoedema.

If you are diagnosed with lymphoedema, you’ll be referred to a lymphoedema specialist. They will examine the affected area and assess whether your lymphoedema is mild, moderate or severe.

In some areas of the UK, there are specialist lymphoedema centres where you can get advice and treatment.

Signs and symptoms of lymphoedema

The signs and symptoms of early lymphoedema include:

  • Swelling – your clothing, shoes or jewellery (rings or watches) may feel tighter than usual. This may be the first thing you notice before you even see any swelling. 
  • Change in sensation – the limb or area may feel heavy, tight, full or stiff. 
  • Skin changes – the skin in the area may feel tight or stretched and sometimes the texture can feel thicker. Skin may also be dry, flaky, rough or scaly. 
  • Aching in the affected area.


Other symptoms of lymphoedema

The symptoms  vary depending on whether the lymphoedema is mild, moderate or severe. At first, the swelling may not be very noticeable. There may be swelling in the tissue, and soft and gentle pressure might leave a mark or indentation on the skin (pitting oedema).

In later stages, the skin tissue often hardens and there may be more complex skin problems. Occasionally, the skin stretches and breaks, and lymph fluid leaks out onto the surface. This is called lymphorroea and is due to fluid building up in the tissues or damage to the skin.

More severe lymphoedema may interfere with your ability to move about and do everyday things, or it may change the normal shape of your limb.


Diagnosing lymphoedema

Your doctor, specialist nurse or physiotherapist will know which cancer and treatments you’ve had in the past, and will assess whether your symptoms are due to lymphoedema. You’ll be asked about any other signs or symptoms you’ve had, and the swollen limb or area will be examined. Not all swelling is lymphoedema and sometimes tests are needed to rule out other possible causes, such as a blood clot. Some people may need to have scans to find out if the lymphoedema is caused by a cancer affecting the lymph nodes.

If you have any signs or symptoms of lymphoedema, contact your hospital doctor, specialist nurse, physiotherapist or GP for advice. Treatment can improve lymphoedema and the earlier it’s started the more straightforward and successful it’s likely to be.

Lymphoedema specialist

If lymphoedema is diagnosed, you’ll be referred for specialist assessment. Health professionals with specialist knowledge in treating lymphoedema may include:

  • specialist lymphoedema nurses
  • breast care nurses
  • doctors
  • physiotherapists.

Here, the term lymphoedema specialist refers to any one of these health professionals.

Assessment

This is carried out by a lymphoedema specialist who will assess whether your lymphoedema is mild, moderate or severe.

The specialist will ask you about your medical history, look for any changes in your skin and check its condition. They will also assess the size and shape of the limb and how the tissue under the skin feels. The size of the limb may be measured with a tape measure and compared to the unaffected limb. The specialist will also check whether your movement and ability to do everyday things are affected.

Occasionally, other special tests may be used when it’s difficult to diagnose lymphoedema.

Specialist lymphoedema centres

In some areas of the UK, there are specialist lymphoedema centres where treatment and advice are given. Your doctor or nurse should be able to tell you if there’s one in your area, or you can contact the British Lymphology Society, which produces a directory of centres. If you don’t live close to a centre, there are other organisations that can offer advice and support.