Getting a Diagnosis of Lymphoedema

Being diagnosed with lymphoedema may be challenging and frustrating. Many of you may have struggled to get a diagnosis and some of you may still be struggling to get a diagnosis. Unfortunately, not all healthcare professionals (HCP’s) understand this long-term condition, and as there is no single official diagnostic tool for determining lymphoedema, the process can become complicated. Especially if you have secondary lymphoedema associated with a number of other co-morbidities (such as high blood pressure, immobility or obesity), or primary lymphoedema where the symptoms may have been present since birth (or just after), gradually worsening over time.

 

Who can diagnose lymphoedema?

Generally, it will be your GP that will initiate the steps to diagnose lymphoedema. Although they are not experts in managing the condition, they will be crucial in ruling out any significant, acute medical conditions (such as cellulitis) that can cause the swelling, contribute to your symptoms or make them worse.

Appropriate blood tests (which may include thyroid, renal and/or heart function, full blood count etc), and other investigations (see section on imaging, below) may then be implemented (if necessary) to help this process.

Once any acute cause of the swelling has been ruled out, it will generally be assumed that you have lymphoedema and you will hopefully be referred to a healthcare professional who specialises in this long-term condition (such as a lymphoedema specialist). A specific assessment and treatment plan for lymphoedema can then be initiated to help you successfully manage the swelling.

In some instances, it may not be your GP who refers you to a healthcare professional that specialises in lymphoedema, as you may already be under the care of another healthcare professional. For example, it may be a clinical nurse specialist (such as a breast-care nurse) who has the knowledge and information about your medical condition and as such refers you to a lymphoedema clinic or lymphoedema specialist. 

 

How is lymphoedema specifically diagnosed?

Having ensured there is no underlying acute medical cause, the lymphoedema clinic or specialist will generally perform a thorough clinical assessment (based on your medical history and a physical examination). This is important to help find the underlying cause of the swelling. Successful treatment depends upon this.

You will likely be asked many questions about when your symptoms first started (whether it was a sudden or gradual onset), how the swelling progressed and what other medical conditions or surgeries you may have had. 

The specialist will likely ask about pain, whether there is a family history of swelling and whether the swelling goes down overnight or not. It is important to share with the specialist if you have ever had infections in the area of the body that is affected - how often they have occurred, what caused them (if known) and whether or not you required hospital admission. The specialist may also want to see a list of your current medications if you take any (some types of medication can make the swelling worse).

The specialist will take a thorough examination of the affected area – looking at the condition of your skin (whether it is intact or damaged in anyway), the tissues (how hard or soft they are) and the lymph nodes (whether they are enlarged or painful). They will also check where the swelling is (i.e. whether it affects just the limb itself, or whether it extends beyond the limb and into the trunk of the body). 

The specialist may carry out tests to check the venous/arterial system in more detail and may take detailed circumferential measurements of both the affected and unaffected limb. Such measurements are one way to determine the overall size and severity of the swelling. 

Imaging

Imaging technologies are sometimes (but not always) instigated. Lymphoedema is more often diagnosed by taking a history and clinical examination alone. However, sometimes healthcare professionals need more detailed information to get a better understanding of the underlying cause of the swelling. Such investigations may include:

  • MRI (magnetic resonance imaging) scans
  • CT (computerised tomography) scans 
  • Doppler ultrasound scans
  • Lymphoscintigraphy - a type of imaging that uses nuclear medicine to see lymph vessels and lymph nodes
  • Fluoroscopy - another newer imaging technique to ascertain detailed lymphatic mapping in the area. However, not usually available on the NHS
  • Bio-impedance testing – can measure fluid in areas where it cannot be seen and may be used to detect early stages of lymphoedema

It is recommended that you visit your GP as soon as you think you may have a swelling that may be lymphoedema – or experience the typical symptoms of lymphoedema (e.g. limb heaviness/tightness, swelling of gradual onset that usually reduces overnight). Many of us are acutely aware of our own bodies and can recognise quite quickly when something is not quite right. The sooner lymphoedema treatment starts, the more successful it is.

lymphedema CT imaging scan