Jenny spent her whole life believing she was fat. No matter how much weight she lost, her legs never seemed to change – they remained puffed up and swollen.
It’s why Jenny says she would never wear shorts or skirts. It’s one of the reasons she struggled with an eating disorder for years.
But, in Jenny’s case, it was never about her weight.
Jenny has lymphoedema – a chronic condition that causes swelling in the body’s tissue, typically in the arms or legs. And in my clinic she is far from alone, because I am seeing more and more middle-aged women turning up with the same swollen, aching limbs, who are desperate for a cure.
The good news is that, while there is no cure, there is an effective treatment that can ease symptoms. The bad news is that many GPs are not telling their patients about it. As lymphoedema cases continue to rise, that urgently needs to change.
I think I know why the numbers are climbing.
Lymphoedema happens when the lymphatic system, the network of vessels and nodes that drains excess fluid from our tissues and helps fight infection, stops working properly. Fluid builds up, usually in an arm or a leg, and it does not go away on its own.
While in many cases, lymphoedema can occur for no clear reason, there are several underlying factors that can increase the chances of it occurring.
While lymphoedema cannot be cured, a combination of non-surgical treatments, including a specific type of massage, can alleviate symptoms
The first is simple: getting older. Lymphoedema becomes more likely later in life as the lymphatic system does not work as well. And, as the British population grows older, cases of the swelling condition will continue to rise.
Another, which goes hand-in-hand with increasing age, is cancer treatment.
Studies show that women who undergo surgery for cancer, as well as radiotherapy, have a greater chance of developing lymphoedema – likely due to the damage these intensive treatments can do to the lymphatic system.
Cancer is also on the rise in the UK amongst women – again, in large part due to our ageing population – so this may also explain the growing number of lymphoedema sufferers.
However, the disease is also on the rise in younger women too, for reasons that are still unclear.
One of those affected is TV presenter Hannah Fry, 42, who developed lymphoedema after she underwent a radical hysterectomy as part of treatment for cervical cancer in 2021.
The third factor is the most controversial – and some lymphoedema patients may not want to hear this.
While it is true that many patients, like Jenny, can be a healthy weight and still develop lymphoedema, a significant proportion of cases can indeed be worsened by obesity and inactivity.
Growing research suggests that people who have obesity are markedly more likely to develop lymphoedema than those who are overweight, who, in turn, are at a greater risk than those of a healthy weight.
This isn’t to say that lymphoedema is fat. It is a chronic inflammatory condition.
Presenter Hannah Fry developed lymphoedema after she underwent a radical hysterectomy as part of treatment for cervical cancer
But more fat means more pressure on an already struggling lymphatic system, and once swelling begins, it becomes harder to stay active, which in turn makes the swelling worse, a genuinely vicious cycle.
However, whatever the cause, the treatment is generally the same.
It is called decongestive lymphatic therapy, or DLT.
It has four parts. The first is regular exercise. Using the muscles in the affected limb can pump the lymph fluid back through the system. This is why a few sessions a week of moderate exercise, such as walking, running, swimming, cycling or dancing, can make a big difference.
The second step is compression. This means wearing specialist bandages or garments that squeeze the affected limb, stopping lymph fluid from pooling and the condition getting worse.
The third is something called manual lymphatic drainage, a gentle massage carried out by a trained therapist that encourages fluid to move away from the swollen limb.
There are also lymphatic drainage massage techniques that patients can perform on themselves, which a therapist can teach.
The fourth – and often the most under-discussed – is skin care.
GP, author and broadcaster Dr Philippa Kaye
Looking after the skin is absolutely vital for lymphoedema patients. This is because their skin is more vulnerable to infections. These infections – triggered by anything from a scratch, insect bite or tiny break in the skin – can lead to swelling or further damage to the lymphatic system, worsening lymphoedema.
For this reason, patients should wash the affected limb daily, drying carefully and then moisturising with a simple, non-perfumed emollient – a medical-grade moisturiser.
Trim nails and keep them clean and check the affected skin regularly for cuts which should be cleaned and treated as soon as possible.
Practical measures like always wearing gloves for gardening, or avoiding going barefoot if the legs are affected can also reduce the chance of a scratch.
This is also why lymphoedema patients are told to avoid having blood taken from an affected arm if possible.
For Jenny, being properly taught this, rather than being left to guess, changed everything. She had spent years thinking her body had let her down, or that she simply was not trying hard enough. DLT gave her an explanation that actually made sense, and a plan that worked with her body instead of fighting a battle she could never win.
But many lymphoedema patients are not given a detailed guide to DLT treatment – just as they are not warned of the underlying factors that can raise the risk of the condition occurring.
As a result, so many patients suffer alone when these relatively simple steps could make all the difference. That needs to change.
