Coping with lymphoedema

Find out what lymphoedema is, what the symptoms are and what support is available.

What is lymphoedema?

Lymphoedema is a build-up of fluid in body tissues. This happens when your lymphatic system is blocked.  

The lymphatic system is a network of vessels and glands which filter and clear out extra fluid in your body. It is part of the immune system and collects bacteria, toxins, and waste from your cells to get rid of them. If your lymphatic system becomes blocked, the fluid which it usually clears out will build up in tissues under your skin and lead to swelling. This fluid is called lymph fluid

If you have ovarian cancer this fluid is most likely to collect in your lower tummy, pelvic area (between your hip bones), legs or ankles. If you are diagnosed with lymphoedema, you should be referred to a lymphoedema specialist practitioner. They will share treatments to help manage lymphoedema. These may include a specialist massage to help drain the lymph fluid. It may also include support stockings, pressure pads and bandages which can be provided on prescription.

Who is at risk of lymphoedema? 

If you have had surgery for ovarian cancer you may be at risk of lymphoedema if the surgery involved removing parts of the lymphatic system like lymph nodes. Lymph nodes are found throughout the body and fluid passes through them. Lymphoedema can also be caused by cancer cells blocking a lymph node and stopping it from draining properly. 

Lymphoedema caused by cancer is known as secondary lymphoedema. It can happen in the months or years following treatment.  

How can I reduce the risk of developing lymphoedema?

You can reduce the risk of developing lymphoedema by: 

  • Doing gentle exercise and moving regularly, as this encourages lymph fluid to drain. 
  • Taking care of your skin by keeping it moisturised, using sunscreen to avoid sunburn and treating cuts with antiseptic spray or cream. It is also best to avoid shaving or waxing as this can cause small cuts. This is because skin injury or infection can make lymphoedema more likely. 
  • Eating healthy to maintain a healthy weight.   
What are the symptoms of lymphoedema? 

Early symptoms of lymphoedema include:

  • A feeling of heaviness
  • Tight skin or,
  • A tingling in the affected area.

Without treatment the symptoms can get worse, so it's important to let your medical team know if you notice these. 
As it develops, lymphoedema can cause:

  • Swollen and heavy legs
  • Reduced mobility and,
  • Pain, tightness or aching in the affected area.

Your team will be able to give you advice on how to improve these symptoms and reduce the swelling. 

Swollen and painful legs can have other causes which need immediate medical attention, such as blood clots. Tell your treatment team if you notice any new swelling or pain. 

It's so necessary to do the manual drainage, I do mine before I get out of bed and it takes about 20–30 minutes.

How can I manage lymphoedema? 

Although there is no cure, there are lots of ways to manage the symptoms of lymphoedema. Your clinical nurse specialist (CNS) can give you practical advice on how best to manage lymphoedema. Raising your legs, gentle exercise and compression garments can help.

The NHS recommended treatment for lymphoedema is called decongestive lymphatic therapy. This involves a mix of:

  • Skin care
  • Physical activity
  • Compression bandages, which are flexible strips of fabric that are wrapped around the affected area to stop the build-up of lymph fluid
  • Specialised massages which help by moving lymph fluid away from swollen areas. Speak to your treatment team about massage techniques you can do at home. 

The Lymphoedema Support Network have answered common questions about lymphoedema and have more tips for self management.

Skin Care

Good skin care is an important part of managing lymphoedema. This is because an infection or injury can make lymphoedema worse. You can help avoid an infection by:

  • Keeping your skin clean and moisturised
  • Avoiding shaving or waxing which can cause small cuts, and
  • Treating any cuts, grazes or burns with antiseptic spray or cream.

Staying Active

Gentle exercise and movement can help reduce the symptoms of lymphoedema, but it can be daunting to exercise after a cancer diagnosis or treatment. Our free weekly online yoga sessions might be a good place to start. 

Woman doing yoga at home

Try our weekly yoga

Our yoga sessions are run by a specialist cancer yoga instructor and are suitable for complete beginners and those who have done yoga before. 

What impact might lymphoedema have on me mentally? 

As well as physical impacts, lymphoedema can affect how you feel mentally. You may find the changes in your mobility hard to cope with emotionally, and it can be frustrating or isolating to get used to living with a new long term condition. You may also find that the changes to your skin or appearance can also impact your self-esteem. Beyond learning practical ways to manage lymphoedema, there are things you can do help if you are finding it difficult emotionally. 
It can help to speak to someone about these feelings: 

  • If you want to speak to a specialist nurse, whether you need practical information or just a listening ear, our support line is here for you. 
  • If you want to speak to others with a diagnosis, we run bi-weekly tea and chat sessions. These are hosted by one of our nurse advisers over Zoom. This is a light-hearted, informal space to connect with others.
  • If you want to speak to others who have gone through treatment, our online communities are safe and supportive spaces for anyone affected by ovarian cancer.  

There are other organisations that can help support you: 

  • The Lymphoedema Support Network is a national charity which provides support for people living with lymphoedema. It can be helpful to speak to others with experience of managing lymphoedema. You can order their free information pack by contacting them via the phone or email.
  • If you are struggling with low self-esteem, Look Good, Feel Better is a cancer support charity which run free online workshops to help you build your confidence after cancer treatment. The workshops range from skin and nail care to movement and mobility. 

More support and information 

Rachel and Val Target Ovarian Cancer nurse advisers

Our support line is open Monday-Friday, 9am–5pm

Three women standing together laughing

Join the Ovarian Cancer Community

Speak to others who have gone through treatment for ovarian cancer.

Last reviewed: November 2023 
Next review: November 2026 
To learn more about our review process, take a look at our information standards


Below is a sample of references used for this article. You can request the full list by emailing [email protected]