What is lymphoedema?

Lymphoedema (pronounced lim-fa-dee-mah) is estimated to affect more than 240,000 people in the UK. It is a chronic (long-term) condition in which excess fluid collects in the body’s tissues causing a swelling, known as oedema. It develops when the lymphatic system isn’t functioning properly. This may happen when there is an absence of lymph vessels in the lymphatic system, damage or obstruction to the lymphatic system or because it is overloaded due to other conditions such as venous disease. The lymphatic system is a network of vessels and glands that transport fluid, rid the body of toxins and waste to help fight infection, and absorb lipids (fats).  Lymphoedema can occur in any body part, most often the arms and legs, but also the breast or chest wall, head and neck or genitals.

What are the symptoms of lymphoedema?

Whether primary (from birth) or secondary (caused by another condition e.g. cancer), lymphoedema is progressive and develops in stages which are categorised according to the severity. Some symptoms include but are not limited to:

  • swelling of more than three months duration
  • swelling that may come and go initially, possibly reduce overnight, but is usually worse by the end of the day
  • feeling of discomfort, tightness, heaviness or ache in the affected body part
  • change in sensations in the body part such as, tingling or temperature changes
  • abnormal tightness of clothing or jewellery

Left untreated, the swelling over-time becomes more permanent. It doesn’t subside over-night and the area will begin to feel increasingly hard and solid.

If you have been advised that you may be at risk of developing lymphoedema, or experience some of the typical symptoms, you should monitor the area closely, note any changes and communicate these to your healthcare professional. Your healthcare professional will assess, diagnose and categorise the lymphoedema and stage to develop an appropriate treatment plan. Lymphoedema currently has no known cure but its symptoms can be managed to ensure it does not progress and to try to prevent further complication such as infection.

Living with lymphoedema

Lymphoedema is a chronic condition that never goes away as the lymphatic system cannot repair itself however, with the right diagnosis and prompt treatment it can be well managed. As this is a life-long condition, living with lymphoedema can be challenging, especially if you feel as though you’re going through it on your own. If you have lymphoedema, or you’re a parent, relative or carer to someone who is affected by the condition, you may feel the need to connect and share your experiences with others who can understand and empathise with you. LymphConnect is an online platform that enables people to find information about lymphoedema and form connections with others and share.

Join this online lymphoedema community

LymphConnect® allows those who are living with lymphoedema to connect with others, get support and share experiences in the open forum and learn how others have navigated through managing their lymphoedema. You can learn more about symptoms and treatment options and find out what it’s like to live with lymphoedema as time goes on. You can also listen to the experiences of others and how they cope with their condition like cancer survivor Lucinda who remains very active and Linval who manages his primary lymphoedema by focusing on his music.

Visit LymphConnect® to gain inspiration and encouragement – discover tips and tricks to integrate into your daily life to make managing lymphoedema that little bit easier. You’ll find information on a range of topics, including therapy solutions, from manual lymphatic drainage and skin care to compression therapy and exercise. There’s also a helpful FAQ section called ‘Ask Elvy’, where you can find the answers to popular questions, or ask your own question if you can’t find what you’re looking for!

Free and simple to join

Joining LymphConnect® is free and only takes a few minutes. Register now for LymphConnect® and start enjoying the benefits of this online platform or email [email protected] for more information. We all have busy lives and as LymphConnect® is online, it is an excellent way to get support from a lymphoedema community at a time when it is convenient to you.

To find out more, visit

Source: International Society of Lymphology. (2003). The diagnosis and treatment of peripheral lymphedema. Consensus document of the International Society of Lymphology; 36(2): 84-91.

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