Living with lymphoedema

You'll have regular check-ups with your lymphoedema specialist, where they’ll look at the affected area. You should notice an improvement after a few weeks.

It’s important to eat healthily and keep to a healthy weight. Being overweight puts more stress on the lymphatic system and makes lymphoedema harder to manage and treat. Try to:

  • cut down on fat and sugar
  • eat a balanced diet
  • do more physical activity – only after getting advice from your lymphoedema specialist or doctor.

It’s also important to stick to sensible alcohol guidelines and avoid smoking.

Lymphoedema can affect your sex life and change the way you feel about your body. But there are ways to make sex more comfortable and enjoyable. You can also talk to your partner about your concerns and ask your lymphoedema specialist for advice.

If you’re travelling, you may worry your lymphoedema might become more troublesome. Planning ahead and being careful while you're away should mean you can manage any problems and enjoy your time away.

Coping with lymphoedema

Because lymphoedema is a chronic condition, it’s important to stay involved in your lymphoedema care. Keeping up with all the precautions and treatments advised by your specialist can take up a lot of time and you may need extra support from friends and family. Making contact with others through a support group or an online forum can also be a good way of keeping motivated.

This section explains some other things you can do to stay as healthy and as involved in your healthcare as possible.

Your follow-up

It’s important to go to your regular check-ups with your lymphoedema specialist or doctor. During these check-ups, the skin and tissues in your swollen area will be looked at. Your arm or leg will also be measured to monitor the effect of treatment. Some people find it helpful to keep their own progress chart where they can write down the measurements each time. Try to stick with the advice that you have been given about managing and treating the lymphoedema.

At first your progress may be slow, but you should notice an improvement in the affected area after a few weeks. If you have any concerns, talk them over with your lymphoedema specialist or doctor. You should be able to contact them between appointments if you have any problems.

‘I've been living with lymphoedema for 16 years and it doesn't really have a great impact on my life.’ Karen

Karen


Keeping to a healthy weight

It’s important to try to keep to a healthy weight if you have lymphoedema or are at risk of developing it. Being overweight puts more stress on the lymphatic system and makes lymphoedema harder to manage and treat. Compression garments can be more difficult to put on and may not fit as well.

It can be difficult to lose weight and to keep to a healthy weight. In some circumstances, such as after breast cancer treatment, some people find that they have gained weight because of the treatment.

If possible, try to keep your weight within the normal range for your height. Your GP can tell you what your ideal weight is. You may find it helpful to ask your GP or a dietitian for advice and support.

Tips for keeping to a healthy weight

  • Reduce your calorie intake by cutting down on fat and sugar in your diet. Only eat as much food as you need.
  • Eat a balanced diet with lots of fruit and vegetables to make sure you get all the nutrients you need to keep your body healthy.
  • Increase your physical activity. This will help you to burn calories. Always get advice from your lymphoedema specialist or doctor before you start.

If you need to lose weight it is best to avoid crash diets, which can make you lose weight very quickly. Losing weight slowly is healthier and you’re more likely to keep the weight off for good. We have more information about managing weight gain.

Healthy eating

There isn’t a special diet to prevent or control lymphoedema. However, eating healthily helps to improve your general health and well-being, which is important when coping with lymphoedema. It also helps you to keep to a healthy weight.

Try to eat:

  • five portions of fruit and vegetables a day
  • more high-fibre foods (wholegrain cereals, brown bread)
  • more chicken and fish, especially oily fish
  • less red and processed meat
  • less saturated fat (pastries, samosas, cheese)
  • less salt.

It’s also important to drink plenty of water.

We have more information about healthy eating.

Keeping a food diary

Some people with lymphoedema find that certain foods, such as spicy and salty foods, or alcohol (especially wine) can cause an increase in swelling. Keep a note of any foods you think make your lymphoedema worse as this will remind you to avoid them.

Alcohol

Too much alcohol is high in calories and can cause other health problems. It’s important to stick to sensible drinking guidelines. Current guidelines recommend that men drink no more than 3–4 units of alcohol per day, and women no more than 2–3 units per day.


Avoiding smoking

Smoking affects blood circulation and may affect the skin, which is already damaged by lymphoedema.

If you’re a smoker, you may want to stop. Stopping has many health benefits and reduces your risk of other diseases, such as heart disease, strokes, lung diseases, bone thinning (osteoporosis) and smoking-related cancers. You’ll also feel healthier and save money.

We have more information about giving up smoking. It includes the techniques, medications and organisations that can help you quit.


Your sex life

Lymphoedema can affect your sex life and change the way you see, and feel about, your body. You may worry that your partner no longer finds you attractive. If you don’t have a partner, you may worry about a physical relationship in the future.

Coping with lymphoedema may make you feel too tired to have sex, and in some situations, may make it physically difficult to have sex. Men who have genital swelling may have difficulty getting an erection. You can get advice about this from your doctor or lymphoedema specialist.

It may involve a period of adjustment for you and your partner. As the lymphoedema improves and you get used to managing it, you’ll probably find that your desire for sex improves.

To make sex more comfortable and enjoyable, you may want to:

  • find sexual positions that don’t put weight on the area affected by lymphoedema
  • have sex when you feel the swelling is better, for example many people find their swelling is less in the morning or after wearing a compression garment for a few hours
  • use extra lubricant if you have genital lymphoedema, to reduce friction to the skin
  • have sex while partly dressed or in dimmed light if you feel very self-conscious.

It may help to talk to your partner about your concerns if you feel very self-conscious. Talking can help you understand one another better. Sharing your feelings can help your confidence. Partners are often concerned about how to express their love physically and emotionally. Cuddles, kisses and massages are affectionate and sensual ways of showing how much you care for someone, even if you don’t feel like having sex.

Many people feel embarrassed or self-conscious when talking about sex. It’s important to remember that your lymphoedema specialist or doctor will be used to talking about these issues and can suggest what you could do for extra help and support. If you need more expert help, they can refer you to a psychologist, counsellor or sexual therapist.

We have more information about sexuality and cancer and body image.


Travel and lymphoedema

If you are planning to go away on holiday, you may worry that your lymphoedema might become more troublesome. As long as you plan ahead for your trip, you should be able to manage any possible problems and enjoy your time away. You may find this checklist useful to help you plan ahead.

Before you go

  • If you need any vaccinations before your holiday, it’s important not to have any injections in the affected limb.
  • If you’re planning a more active holiday, it may be worth talking with your lymphoedema specialist before you go. They can advise you how to plan your trip so you don’t put too much stress on the affected area.
  • If you are planning to fly a long distance and have been fitted with a compression garment, you will need to wear it a few hours before, during the flight and for a few hours after. Any increased swelling you might notice during the flight should reduce afterwards.
  • Keep your swollen limb moving by doing exercises during the flight. You can ask your lymphoedema specialist what exercises might help.
  • Ask your GP to give you some antibiotics just in case you develop cellulitis while you’re away. It can be helpful for your lymphoedema specialist to speak with your GP about this. We have more information about cellulitis and antibiotics.
  • Make sure you pack an antiseptic cream just in case you get a cut, scratch or bite on the affected limb or swollen area.

Pack an insect repellent spray or cream. You need repellent containing at least 50% DEET. This is the active ingredient in insect repellent. Your pharmacist can advise you which might be best.

If you are taking any prescription drugs with you, make sure you have enough to last and a letter from your doctor with you.

Make sure you have enough medical insurance cover.

While you are away

  • If you have lymphoedema in your leg, do not walk barefoot on the beach or around the swimming pool. This reduces the risk of cuts and possible infection in your foot.
  • Sunburn can increase swelling. If you are in a hot climate, it’s important to wear good quality sun block, with a sun protection factor (SPF) 50.
  • Sit in the shade or cover the affected area with a hat, long-sleeved shirt or loose trousers.
  • Drink plenty of water.
  • Sea salt and chlorine make the skin extra dry. If you go swimming shower afterwards and apply moisturiser.
  • Avoid saunas and hot baths. Keep the affected limb as cool as possible.
  • Avoid lifting and pulling heavy luggage with your affected arm. Ask someone to help.
  • If you start to get signs of an infection, such as flu-like symptoms, high temperature, redness or heat in the affected limb or increased swelling, let a doctor know straight away. If you have antibiotics with you, start taking them as soon as possible.

We have more information on travel and cancer.

You can also contact the Lymphoedema Support Network, which has a more detailed guide on holidays and travel for people with lymphoedema.

‘I wear compression garments when I fly and pack bandages when I go away. I always have antiseptic spray in case I graze my leg.’ Steve

Steve