Getting a Diagnosis of Lymphoedema

Being diagnosed with lymphoedema can be challenging. Many of you may have struggled without a diagnosis for far too long. Unfortunately, there is no single official diagnostic criteria for determining if someone has lymphoedema. This becomes even more complicated if you have primary lymphoedema where the symptoms may have been present since birth, or have been around for a long period of time, and gradually worsened.

There are some diagnostic or imaging tests that can be performed to help with diagnosis. However, a thorough and full assessment including a physical examination and history of symptoms are key, and typically all that is used for a correct diagnosis. Your healthcare professional needs to make sure that there are no other significant medical conditions that can also cause swelling or contribute to your symptoms. You will be asked many questions about when your symptoms first started, how they progressed and what other medical conditions or surgeries you may have had. It is important to share with your healthcare professional if you have ever had infections in the area of the body that is affected. Your healthcare professional will likely examine your skin, soft tissues and lymph nodes, they may carry out some tests to observe the venous system in more detail and they may well take detailed measurements of both the affected and unaffected limb.

Limb measurements are the standard way of diagnosing lymphoedema and the severity. Accurate measurements determine the limb volume. The International Society of Lymphology (ISL) recommends that healthcare professionals use simple limb volume assessments to determine severity and assist with staging (mild <20% increase, moderate 20-40% increase, and severe >40% increase)1. Other factors considered are extensiveness of swelling, presence of infections and inflammation.

Imaging

Imaging technologies allow healthcare professionals to get a better view of the circulatory system, ensuring a more accurate diagnosis of the stage of lymphoedema. They may include: MRI (magnetic resonance imaging) scans, CT (computerised tomography) scans, Doppler ultrasound scans and lymphoscintigraphy. Lymphoscintigraphy is a type of imaging that uses nuclear medicine to see lymph vessels and lymph nodes. It can show if your lymphatic system has any abnormalities in lymph flow or structure. Bio-impedance testing can measure even small, clinically unperceivable amounts of fluid and can be used to detect early lymphoedema. However, these types of tests cannot detect the cause of the swelling, and not all clinics or services carry these investigations out.

Who can diagnose lymphoedema?

It is recommended you visit your GP if you experience the typical symptoms of lymphoedema and are concerned you may have the condition. Your GP may refer you to a specialist lymphoedema treatment centre for further assessment. There are a number of lymphoedema clinics throughout the UK with clinicians who specialise in lymphoedema treatment.

1 Source: International Society of Lymphoedema. (2013). The Diagnosis and Treatment of Peripheral Lymphedema: Consensus Document of the International Society of Lymphology. 46:1-11.

lymphedema CT imaging scan