This information has been produced and verified by accepted experts in their field and reflects current best practice. The information has been designed to assist you in managing your condition and is not intended to replace advice you may receive from your health care practitioner. If you or your healthcare practitioner would like further information, to ask any questions about this information, to provide us with any feedback or to find out what research underpins it, please contact the Lymphoedema Support Network on 020 7351 4480.

Introduction

Lymphoedema is a swelling that develops as a result of an impaired lymphatic system. This may be as a result of the lymphatic system not developing properly or through damage or trauma (see section on types of lymphoedema). It can affect any part of the body but is most commonly seen in an arm or a leg. Although thought to be relatively uncommon, recent research suggests that 6 in every 1,000 people in the UK may be affected by this condition. In order to understand how lymphoedema occurs, it is important to have an understanding of the lymphatic system in general – what it is and how it works.

The Lymphatic System

How Does Lymphoedema Occur?

If, for whatever reason, the lymphatic system is not working correctly, or the vessels are not draining adequately, the fluid and other materials in lymph build up in the tissues (as when a river is dammed and flooding occurs). Swelling occurs when the amount of fluid in an area is greater than the capacity of the lymphatic system to transport it away. Lymphoedema can be defined as ‘oedema (swelling) due to the accumulation of lymph in the tissues’.

Types of Lymphoedema

Lymphoedema can be described as primary or secondary.

Primary Lymphoedema is usually determined from birth and arises due to some failure of the lymphatic system itself – usually with the underdevelopment of the lymphatic system. It may occur without any obvious cause at different stages in life, but particularly at puberty.

Secondary Lymphoedema is the result of some influence from outside of the lymphatic system that prevents it working properly. Examples of causes of secondary lymphoedema are:

• Reduced mobility/paralysis – muscle contractions (during activity/exercise) are important to help the lymph to move
• Problems with veins not working efficiently (varicose veins/after deep vein thrombosis) – often known as venous insufficiency. This results in the lymph system becoming overloaded and unable to function effectively.
• Obesity – this can also cause lymphoedema or exacerbate the problem.
• Cancer itself – may also result in a blockage of the lymphatic system.

Unfortunately, most of the underlying causes of lymphoedema are irreversible and as such, there is currently no known cure – however, appropriate treatment can be implemented to reduce the swelling and keep it to a minimum. (See section on ‘What can be done to help?’). This medical (conservative) treatment can, in most cases, improve quality of life dramatically.

How Does Lymphoedema Progress?

Initially, lymphoedema may not be troublesome at all. It may be just a slight swelling that comes and goes (intermittent) – and it is quite common to notice worse swelling as the day goes on. For example, the swelling may be minimal on waking – but become larger as the day progresses – especially in warm weather. It is often possible to use simple measures to resolve the swelling at this stage so treatment should always be started as soon as possible.

If left untreated, the swelling over time becomes more permanent; it doesn’t subside overnight and the area will begin to feel increasingly hard and solid.

What Can Be Done To Help?

Firstly, it is essential that lymphoedema is correctly diagnosed and appropriately assessed. Unfortunately, there is still a major lack of medical knowledge and expertise and some people are still told ‘there is nothing that can be done to help’, which is simply not true. There are treatments which work well to reduce and control the swelling.

The LSN has a comprehensive directory of services, which will highlight the nearest lymphoedema clinic to you. The British Lymphology Society has also produced a document that sets out minimum standards of care. If you are experiencing difficulties obtaining help, ensure your GP is given a copy. Online learning modules for healthcare professionals are also available to improve GP knowledge – see the Healthcare Professionals section on our website for details or ask the LSN for the information to pass to him/her.

Assessment

Assessment (usually carried out by specially trained nurses or physiotherapists) will ascertain the actual cause of the swelling, as well as determining the overall size and extent of the swelling, which may alter the type of treatment you are offered.

Generally, there are four components of care that will be recommended for people with mild to moderate swelling of their limbs:

• Skin Care – to keep the skin and tissues in good condition and to prevent/reduce the risk of infection (Cellulitis). For more information see the LSN fact sheet ‘Skin Care For People With Lymphoedema’, which is free to members.
• External Support/Compression – in the form of elastic compression garments to help prevent the swelling from building up in the limb. For more information see the LSN fact sheet ‘The Use of Compression Garments in Lymphoedema Management’, which is free to members.
• A programme of exercise and movement – to try and maximise lymph drainage without over exertion (this would cause the swelling to worsen). For more information on exercise see the LSN’s ‘Recreational Exercise and Movement with Lymphoedema’ fact sheet, which is free to members.
• Self Lymphatic Drainage (SLD) – a gentle massage technique that is based on the principles of Manual Lymphatic Drainage (MLD) (see below). It involves the use of simple hand movements to try and move the swelling out of the affected area into one that may be more able to drain the fluid. It is designed to be carried out by patients themselves – or their relatives or carers. The LSN book ‘Your lymphoedema – taking back control’ features fully illustrated instructions for four sequences of SLD – one for arm, leg, head, face and neck and breast and chest wall. There are also accompanying videos on our YouTube channel which can be a useful tool.

Reassessment and monitoring of progress is essential to ensure good results. It is also vital that patients help themselves. Lymphoedema is a long term, chronic condition and one that requires a high level of motivation and compliance by the patients themselves.

For people with a more severe swelling, additional treatments may be recommended within a more intensive treatment programme called Decongestive Lymphatic Therapy (DLT) or Combined Decongestive Therapy (CDT). This intensive treatment may last for a period of 2 – 4 weeks and combines a package of treatments on a daily basis. These may include some of the above, plus one or more of the following:

• Kinesio Taping – Is commonly used in lymphoedema clinics to assist with fluid drainage (in both the intensive and self-care phase of treatment). This taping therapy was originally designed to help with sporting injuries, but can also help reduce swelling. For more information, see the LSN fact sheet ‘The Use of Kinesio Tape in Lymphoedema Management’, which is free to members.
• Drug Therapy – although research is still ongoing, drug therapy for pure lymphoedema is very limited. However, there are certain situations when some drugs will be of benefit – your therapist will be able to advise you.
• Surgery – traditional de-bulking operations rarely prove beneficial for lymphoedema, though there are certain situations where it may prove essential e.g. for eyelid or genital swelling. Liposuction is now more commonly used for debulking the fat component of the swelling. Surgery should only be performed by surgeons who have experience with lymphoedema and the lymphatic system. Advances are coming through however, and microsurgical techniques and Liposuction are being increasingly explored (though they are not as yet, widely available on the NHS).

Until relatively recently, there were limited options open to people who developed lymphoedema – many were told they would have to live with this often distressing condition. However, with the committed efforts of many Health Care Professionals (HCPs) – effective treatments have become much more widely available. With the continued dedication and enthusiasm of such HCPs, and the ceaseless campaigning, to raise awareness of the condition by the Lymphoedema Support Network, more and more people affected by lymphoedema will be able to access appropriate and successful treatments and the nihilistic attitude once held will become a thing of the past.

With appropriate information and the help and support of a lymphoedema practitioner, there is much that patients can do to help themselves in the management and control of their condition. Indeed, patient education, advice and support is now at the forefront of care, ensuring all patients diagnosed with lymphoedema, become an expert in managing their own condition.

To help you achieve this, the LSN has produced a self-management book called, Your Lymphoedema – taking back control. It is available from our online shop on our website or by contacting the LSN office on 0207 351 0990.

Denise Hardy, LSN Nurse Advisor

Last reviewed October 2022
Next planned review October 2025