Living with lymphoedema: ‘If I had known what it was and what to look out for things could have been different’
We have all had experience of feeling bloated or having swollen ankles after a hard day on our feet. But imagine what it would be like if your body swelled up of its own accord and no amount of resting, detoxing or dieting would make any difference.
This is the reality for thousands of people who suffer from a condition known as lymphoedema. This debilitating disorder is caused by a build-up of fluids, coupled with the breakdown of the lymphatic system.
Throughout March, Lymphoedema Ireland is hoping to raise awareness and funds to help those with this chronic condition.
Nina Murray is a civil servant living in Wexford. Married to Tony, the 36-year-old developed lymphoedema in 2009 after battling cervical cancer, which also left her infertile.
But she was relieved to have survived the disease and returned to work only to discover that fate had delivered her another blow.
“I was off work for six months recovering from treatment and surgery and a few days after I returned, I noticed that my lower left leg was bigger than the right,” she recalls.
“It went down overnight, but I went to a doctor who thought maybe I may have injured it. But I had read about lymphoedema online and when I asked the doctor about this, she said I would have to be extremely unlucky to get it.”
So Nina, who was busy planning her wedding to Tony, stopped thinking about her swollen leg and decided to concentrate on her big day. Unfortunately, the swelling got worse and she realised that something was seriously wrong.
“During the last fitting for my dress I noticed that the left side of the bodice seemed to be fitting strangely, but I reckoned it was due to all the pre-wedding champagne. Then, we went to Mauritius for our honeymoon which was a nightmare, as the long-distance flight, mosquitoes, heat and strappy shoes made the swelling much worse – so I went to see my GP as soon as we got back,” she explained.
“There were no services available for treating lymphoedema, so I went to see a physiotherapist who broke the news to me that I did have the condition and my leg would never return to normal.
“I would have to stop wearing heels, shaving my legs, taking hot baths and would have to wear made-to-measure compression tights every hour of every day for the rest of my life.
“I felt angry, resentful, victimised and scared. My cancer could come back, I couldn’t have kids and now one of my legs was bigger than the other – forever. It was a lot to take in.”
Eight years after being diagnosed with lymphoedema, Nina’s life is very much affected by her condition. She believes much of her discomfort could have been avoided if she had known in advance that having survived cancer, she was at risk of the disorder.
“Today, I wear three layers of made-to-measure compression garments which include a toe glove on my left foot, a thigh stocking on my left leg and full tights,” she says. “The full set cost €850 – and I have to have two so I can wear one while the other is in the wash. They need to be replaced every six months and I don’t get any financial assistance with the cost.
“I need to moisturise my skin every day to avoid cracks, I can’t shave or wax and I have to carry antibiotics everywhere in case I develop a skin infection called cellulitis.
“I also need to regularly have manual lymph drainage therapy to stop additional fluid accumulating on my legs. My left leg is significantly bigger than the right one (33 inch inside leg and a size 9 shoe), so getting clothes to fit is very difficult as you can’t buy trousers with one leg wider than the other.
“But I’ve always been very open about what happened to me and the fact that I have lymphoedema, so I don’t feel that it’s a secret or something that I have to hide – and of course, it’s not really possible to hide it.
“If I had known what lymphoedema was and what to look out for, things could have been different.”
“If I had known what lymphoedema was and what to look out for, things could have been different. If I had been told to wear compression garments as a precaution or as soon as the swelling appeared or if I could have afforded to pay for treatment in the early days (in the absence of publicly funded treatment), my leg wouldn’t be this big and maybe I could wear short dresses and strappy sandals and get on with my life.”
Nina has learned to live with her condition and advises others to try and do the same. “I had lymphoedema for four years before I met anyone else with the condition, but after getting involved with Lymphoedema Ireland, I have met lots of others, some worse off and others better,” she says. “My advice to anyone who has had surgery or radiotherapy would be to find out about this condition and its symptoms. Then be vigilant and respond quickly by getting fitted with compression garments.
“They are not sexy and are far from comfortable, but they will stop the limb getting bigger. I would also encourage people to find a specialist with experience by contacting Lymphoedema Ireland and to connect with other people living with the condition. Try to look beyond the swelling because if you don’t, you can’t expect anyone else to.”
*For more information see lymphireland.com
Lymphoedema is a long-term swelling caused by a build-up of fluid in the body’s tissues. This happens when the lymphatic system, which normally drains fluid, isn’t working properly
Lymphoedema can affect any part of the body and people all ages. Approximately 15,000 people in Ireland are estimated to have lymphoedema, with over 1,200 developing the condition annually following treatment for cancer
Lack of treatment can lead to increased swelling and pain, irreversible damage to the lymphatic system, recurrent infections, the inability to work and reduced psychological well-being and quality of life
There are two types of lymphoedema: Primary Lymphoedema develops if you have a body structure which puts you at a higher risk. This is known as a genetic abnormality of the lymphatic system. You may be born with this condition or it may develop later in life
Secondary Lymphoedema develops because of damage to lymphatic vessels or from an overload of fluid in the tissue-causes include; radiotherapy, advanced cancer, deep vein thrombosis, cellulitis, paralysis and obesity
There is no cure, but if diagnosed early, extreme swelling can be controlled and reduced, infection prevented and the range of movement can be improved to limit the extent of the disorder and the impact it has on the life of the patient.
Early warning signs:
- Transient swelling of a limb or other region of the body.
- Aching, heaviness, stiffness in the affected body part.
- Limitation of movement
- Tightness or temperature changes to areas of the body
- Clothing, jewellery or shoes may feel tighter.
- Swelling may be aggravated by heat, overuse, sustained positions and prolonged inactivity and more obvious at the end of the day.