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Coping with lymphoedema

Lymphoedema can affect you emotionally, physically and practically. There are ways that you can help yourself to cope. You can also get support with this. 

How to cope

Most people have a mix of feelings when they find they have lymphoedema. After treatment, people are often glad that they have got through it. But it can also feel very unfair to have to cope with a treatment side effect.

Living with any chronic (long-term) condition isn’t easy. It’s important to give yourself time to come to terms with it.

Getting support

Do ask for help if you need it. There’s a lot of support available. Your doctors or nurses can refer you to a lymphoedema specialist.

There are lymphoedema services in most areas. What they offer may vary. You might need to ask your doctor for a referral.

Learning about your condition can help you to manage it. You might be able to make decisions and cope with what happens if you are well informed about your illness and treatment.

Remember that although lymphoedema usually can’t be cured, it can be well controlled. And there are ways of managing it so that it becomes part of your daily routine.

The impact of any changes to your appearance will depend on where you have lymphoedema.

But even if other people can’t see your lymphoedema, the swelling can affect how you feel about yourself. Some people feel less attractive or find it harder to go out and socialise.

Over time, things get easier. But it doesn’t always help to hear this at first.

You might find meeting new people difficult. Think beforehand about what you want to say if someone asks you about your lymphoedema. Remember that it’s up to you how much you explain.

Talking to others with lymphoedema

Some people find it helpful to talk to other people with similar experiences. Not everyone wants to do this. But there are organisations that can help.

The Lymphoedema Support Network (LSN) is a national charity offering information and support. You can also share experiences with people who have been through cancer treatment. You can do it on our online forum Cancer Chat.

A healthy well balanced diet helps to keep you well and maintain a normal weight. This can make it easier to manage your lymphoedema.

But maintaining a healthy weight can be difficult for some people. Having lymphoedema can make it hard for you to move around. Your lymphoedema specialist or cancer specialist can give you advice on losing weight. Or they can refer you to a dietician.

Exercise can help with your weight and is also an important part of managing lymphoedema.

Your lymphoedema specialist may have suggested an exercise routine. If they haven’t and you don’t usually take regular exercise, talk to your doctor before you start.

It's best to start exercising gently and build up slowly. Walking is often a good way to begin. You can gradually increase the distance and pace.

Things to look out for

Be careful with any sports that involve repetitive movements. Also, activities where you stay in the same position. These could make the lymphoedema worse. So could sports that need a lot of muscle strength, unless you build up gradually.

You might be doing too much if you develop any pain, aching or swelling. Go back to your lymphoedema specialist if you have any concerns.  

 

Your confidence

Changes in your appearance might make you feel less confident about sex. The swelling can affect the way you feel about yourself and how you think others see you.

Try talking to your partner. It can be hard for them to understand unless you explain how you feel.

Talking about sex is an awkward conversation for many people. But if you can talk about your worries, it can help you both to get used to your new situation. Then things might feel less awkward. A caring and loving partner can help to ease your concerns.

Talk to your nurse or physiotherapist about how your partner can help. Your partner can learn to help with self-massaging (simple lymphatic drainage). Using touch can be part of the intimacy you share.

Sexual activity

Sexual activity will be more difficult if you have genital lymphoedema. You might need to think about other ways of gaining pleasure while you have swelling in that area.

It should still be possible to have sexual intercourse. But to avoid any pain or tissue damage, you might need to be very gentle and take things more slowly. Use a good amount of lubricant.

You might feel too embarrassed to talk about sex with your lymphoedema specialist. Keep in mind that they see many other people with the same concerns and had specialised training to deal with it. Speak to them if you feel worried about sex or have any difficulties. They can listen and offer emotional support and practical advice. 

How lymphoedema will affect your work, depends on your job. The part of your body that has swelling will also play a role.

You might need to change your job if it involves doing repetitive things. Standing for long periods might also affect your swelling. Often employers can make physical or practical changes to help you carry on working. Talk to your employer and your lymphoedema specialist to work out what might help.

You may need to claim benefits if you’re unable to work.

There is no reason why you can’t go on holiday when you have lymphoedema. But getting there and back might mean sitting still for long periods of time.

Try to move around as much as possible. You may need to stop more often if you are travelling by car.

On a plane, try to do leg and arm exercises and get up every hour. You will need to wear a compression garment if you have lymphoedema. Put it on before you get on the plane and try to keep it on for 2 hours after you get off.

Things that might help
  • Talk to your doctor about taking antibiotics with you, in case you get an infection (especially if you've had an infection in the past or if you're going to a country where it is difficult to access healthcare).
  • Be careful with carrying heavy luggage.
  • Wear a well fitting elastic (compression) sleeve or stocking when travelling if you have lymphoedema.
  • Wear loose clothing.
  • Exercise during your holiday.
  • Avoid extremes of temperature – if possible, keep cool.
  • Avoid sunburn.
  • Look after your skin – keep it clean and moisturised.
  • Avoid insect bites – use an insect repellent.
  • Clean cuts and grazes with antiseptic and cover them.
  • Drink plenty of water.
  • Try not to overdo it when you are away – do the same amount of exercise as you would normally do.
Last reviewed: 
21 Jun 2017
  • Lymphoedema Care
    Woods, M
    Blackwell Publishing Ltd, 2007

  • The Royal Marsden Hospital Manual of Clinical Nursing Procedures (9th Edition)
    Editors: Lisa Dougherty and Sara Lister
    Wiley-Blackwell, 2015

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