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L-W-O Community

Primary, Secondary & Paediatric Lymphoedema Online & in the Community

What is Lymphoedema?

The lymphatic system is made up of groups of lymph nodes throughout the body which are connected by a network of lymph vessels.

It works in the following way:

  • Acts as a one way drainage system transporting fluid from the body tissue into the blood circulation
  • Contains white blood-cells called lymphocytes, which fight infection
  • Removes waste products

For more information visit our page on the lymphatic system.

Primary & Secondary

There are two types of lymphoedema, Primary and Secondary.

  • Primary lymphoedema develops as a result of a fault within the lymphatic system usually as a result of genetic underdevelopment or weakness of the lymph conducting pathways.  It can affect men, women and children at any age.
  • Secondary lymphoedema is a failure of the lymphatic system because of damage to a normally functioning lymphatic system. For example, injury, trauma, or cancer treatment.

Other reasons

Lymphoedema can occur because of infection, severe injury, burns or any other trauma that can damage the lymphatic nodes, vessels.  It can also arise because of the venous system not working efficiently i.e. those who have a deep vein thrombosis (DVT), varicose veins or ulcers.  Those patients suffering from lack of muscle movement i.e. those suffering from a stroke or Multiple Sclerosis may also be at risk. 

In the case of Lymphatic Malformations as a family we were told that our Great Granddaughter's  Cystic Hygroma was because the lymphatic vessels did not developing properly in the womb.

No one can explain why one person gets lymphoedema and another doesn't.  Thankfully, we are seeing more research then ever in the UK and Globally which is giving those of us who live with this condition hope.

Signs and symptoms

Signs and symptoms can vary in each person so those at risk should look out for

  • Swelling in the 'at risk' limb/area of the body (even if it goes down at night)
  • Heavy feeling or ache in the limb/area of the body
  • Increasing tightness of jewellery
  • Red hot area/rash or flu like symptoms that may indicate cellulitis
  • Skin Changes, thickening or peau d'orange changes (Orange peel skin - dimpled in texture) particularly in the breast or abdominal area

With me it is always a heavy dull ache, sometimes a warm sensation and some of my friends experience pins and needles. 

Living with lymphoedema

Lymphoedema takes a while to come to terms with, as you do, the more positive you can be about your condition then the easier it becomes to live with.  Please remember that lymphoedema is manageable with the right treatment.

As far as I am aware there is very little psychological help for those of us living with lymphoedema.   A support group like L-W-O is invaluable to those of us living with this condition.



The UK spelling is - Lymphoedema

The USA spelling is - Lymphedema

Pronounced limf-o-dee-ma

According to Lymphoedema Ireland there are now more searches through Google for the spelling Lymphedema.

Lymphoedema is often shortened to 'LE'.

Condition or Disease?

Is Lymphoedema a condition or disease?  Our friends in America, Canada and large parts Europe call Lymphoedema a disease.  For some very quirky reasons in the UK it is called a Condition.  Not only does this annoy me intensely it annoys many of our members, because I and they both believe this downgrades the seriousness of lymphoedema.  While lymphoedema is lifelong and incurable it still must not take away that with active treatment and after, self-care is important and that lymphoedema can be managed and treated.


Sources used for this page come from The British Lymphology Society

The Lymphoedema Support Network

Self-Care Forum

Questions posed by L-W-O support group members

This page was first published in September 2013 as part of our Home Page

It was republished independently 15/07/2019

Last updated 24/07/2019