How to end the agony of lymphoedema... without resorting to expensive surgery or medication: Jacqueline was in so much pain she found walking impossible. Now, she reveals how she's better than ever

It was meant to be a simple procedure – the kind thousands of women undergo every year. But shortly after surgery to remove a bothersome varicose vein, Jacqueline McWatt’s legs became hard, swollen and agonisingly painful.Eventually, walking was almost impossible. She had given birth to two children in two years, and when she repeatedly complained of painfully heavy legs, doctors told her it was the strain of pregnancy and would soon settle down.‘It was quite a lonely time and I felt isolated and depressed,’ says Jacqueline, now 53, a part-time hairdresser from Bonnybridge in central Scotland.‘I was trying to cope with a newborn baby, a one-year-old and two other children and was in so much pain that I could barely bend my legs, even to do simple things around the house.‘All the while, doctors were saying there was nothing wrong with me, but I felt like my legs were getting bigger and bigger and were disproportionate to the rest of my body.’It wasn’t until much later that she finally received a diagnosis of lymphoedema.While the condition cannot be cured, through a combination of non-surgical treatments, including a specific type of massage, Jacqueline successfully reduced her symptoms – and improved her mobility.And hers is ultimately a message of hope: that with the right treatment, lifestyle changes and persistence, lymphoedema can often be successfully controlled – even after years of debilitating symptoms. While lymphoedema cannot be cured, a combination of non-surgical treatments, including a specific type of massage, can alleviate symptomsSo what causes the condition, what are the warning signs – and what can sufferers do to keep it at bay? We spoke to the experts to find out.Why does lymphoedema happen?Long overlooked and poorly understood, lymphoedema – and the difficulties it causes – is gradually gaining greater recognition.This is partly thanks to high-profile sufferers including US TV host Wendy Williams, 62, and Oscar-winning actress Kathy Bates, 78, who have spoken publicly about their struggles with the condition.British mathematician and TV presenter Hannah Fry, 42, has also spoken about developing lymphoedema following treatment for cervical cancer. After being diagnosed in 2020, she underwent a radical hysterectomy and later developed the condition in her leg – a long-term consequence of her treatment that she explored in her BBC documentary Making Sense Of Cancer.So what is lymphoedema – and why does it cause such severe swelling?The answer lies in the lymphatic system, a network of tiny vessels that acts like the body’s drainage system, collecting excess fluid from tissues and carrying it back into the bloodstream.Unlike the circulatory system, it has no heart to act as a pump. Instead, it relies largely on everyday movement and muscle contractions to push fluid along.If the vessels become damaged or blocked, that drainage system stops working properly. Fluid begins to build up in the tissues, causing the persistent swelling known as lymphoedema – most commonly in the arms or legs. Presenter Hannah Fry developed lymphoedema after she underwent a radical hysterectomy as part of treatment for cervical cancerThis can happen for many reasons, including cancer treatment, other types of surgery, infection, injury and obesity. Some people are also born with abnormalities in their lymphatic system that can cause the condition to develop.In Jacqueline’s case, her surgery to treat her varicose veins – when veins under the skin become swollen and twisted – is thought to have triggered the lymphoedema by damaging some of the delicate lymphatic vessels that run close to the veins being treated.NHS estimates suggest around 200,000 people in the UK are living with lymphoedema, although specialist organisations believe the true figure may exceed 400,000 because many cases go undiagnosed.Experts say the number of sufferers is rising, driven partly by an ageing population and increasing rates of obesity.Improved cancer survival is another major factor. Surgery to remove lymph nodes – particularly for breast and gynaecological cancers – can damage the lymphatic system and trigger lymphoedema, as can radiotherapy.Misery star Ms Bates developed the condition in both arms after a double mastectomy for breast cancer in 2012, during which lymph nodes were removed.The early signs that are easily missedThere is currently no cure for lymphoedema. Instead, treatment focuses on reducing the swelling and preventing it from getting any worse.Lymphoedema specialist practitioner for MLD (Manual Lymphatic Drainage) UK, Carol-Ann Barrett, says: ‘Lymphoedema is not curable, but it is very maintainable. It's a factLymphoedema can happen as a result of surgery, but in some cases will not present until 20 years after. ‘When it progresses, the tissue becomes more damaged, which makes it harder to treat. This is why intervening early to prevent progression is important.’Early symptoms can be surprisingly subtle, such as a feeling of heaviness, tightness or fullness in an arm or leg.Patients may first notice that a ring or watch feels tighter, that clothes or shoes no longer fit as comfortably, or that pressing gently on the swollen skin leaves a temporary dent.But without proper treatment and management, lymphoedema can gradually worsen.Initially, soft swelling can become increasingly firm as the tissues thicken and develop fibrosis – hard, scar-like tissue that is much more difficult to treat.Lorraine Brown, co-chair of the British Lymphology Society, says: ‘Sometimes when symptoms are mild they get dismissed as minor.‘But when symptoms have progressed and changes to the skin and tissues occur, the symptoms are harder to manage and complications such as cellulitis are more likely to develop.’Cellulitis – a bacterial skin infection that can spread rapidly and, in severe cases, lead to sepsis, a potentially fatal condition – is one of the most serious complications.Damage to the lymphatic system makes it harder for the body to fight infection in the affected area, while each bout of cellulitis can cause further damage and worsen the lymphoedema.In advanced cases, the swelling can become severe enough for the skin to break down and lymph fluid to leak through it – a complication known as lymphorrhoea.Ms Barrett says: ‘Once lymphoedema progresses, you can start to develop all sorts of other comorbidities [two or more medical conditions that co-exist], skin breaking down, and even conditions like lymphorrhoea, where the lymph literally pours out of the limb.’How can the condition be treated?The main treatment is known as decongestive lymphatic therapy (DLT) – a combination of measures designed to reduce swelling and stop fluid building up again.One of the most important is compression. Specially fitted sleeves, stockings or bandages squeeze the affected area, helping trapped fluid move out of the tissue and preventing more from accumulating.Research suggests compression can be highly effective, but only if patients continue using it. This can be difficult because the garments are tight, uncomfortable in hot weather and can be difficult to put on and take off. American actress Kathy Bates developed the condition in both arms after a double mastectomy for breast cancer in 2012, during which lymph nodes were removedThey may also need to be worn for 15 to 20 hours a day. While basic compression garments are available on the NHS, additional pairs or different designs can cost anywhere from £30 to more than £200 each.Another part of DLT is manual lymphatic drainage, a specialised form of massage that uses gentle movements to encourage lymph fluid to drain away from swollen areas.But access can be patchy. Ms Barrett says many women she sees have never been taught even a basic self-administered lymphatic drainage routine and that patients are ‘very lucky’ to be offered it on the NHS.Regular exercise is also encouraged because muscle movement helps propel lymph fluid through the body, while careful skin cleaning and moisturising reduce the risk of infections such as cellulitis.‘It’s this combination that really helps to control lymphoedema day to day,’ says Ms Barrett. The problem, she says, is that many women do not reach specialist services until their lymphoedema is already advanced, often after living with symptoms for years.Jacqueline started out having weekly manual lymphatic drainage massage sessions, which significantly improved her symptoms. Now she goes for treatment once a year and wears compression stockings daily.‘After my first session, I could bend my legs again, and I was feeling so much better,’ she says.Can weight loss and exercise help?Two of the simplest ways people can help manage lymphoedema are through diet and exercise.While experts once feared that exercise could exacerbate or even trigger lymphoedema, more recent studies suggest activities such as walking, swimming, cycling and resistance training can help lymphatic function, reduce swelling and improve quality of life. It's a fact Lymphoedema affects more UK people than multiple sclerosis, motor neurone disease, HIV and Parkinson’s disease combined. Obesity is also strongly linked to lymphoedema, although scientists are still working out exactly why. One theory is that the chronic inflammation associated with excess weight may damage the lymphatic system.Dr Antonio J. Forte, a US lymphoedema expert and surgeon, says losing weight may help. ‘If you are obese and you go back to a healthy weight, there is a decrease in your inflammatory markers. This could potentially help with lymphoedema,’ he says.There is also some evidence that an anti-inflammatory diet rich in fruit, vegetables and fibre may help ease symptoms.And while GLP-1 drugs such as Ozempic and Mounjaro are not treatments for lymphoedema, Dr Forte says the jabs could potentially help severely obese patients by helping them lose weight.Ms Barrett, who works with lymphoedema patients taking the drugs, says: ‘Any weight you lose is going to have a significant impact on lymphoedema.’However, she stresses that lymphoedema can affect people of any size, and losing weight is not appropriate or necessary for every patient.When more radical treatment is neededIn severe cases, surgery may be considered. One technique, known as lymphovenous anastomosis (LVA), involves connecting tiny lymphatic vessels to nearby veins, effectively creating a new route for the trapped fluid to drain away.The delicate microsurgery is available to selected NHS patients, although it costs around £15,000 and is offered at only a small number of specialist centres.Presenter Ms Fry opted to pay privately for the procedure after developing lymphoedema following cervical cancer surgery. She has since said the operation significantly alleviated the impact of the condition.In cases where fibrosis has occurred, liposuction can be used to remove this tissue, although this too is not widely available on the NHS.And access to specialist care can be difficult. There are relatively few dedicated lymphoedema centres, meaning high demand can lead to long waits for assessment and treatment.There have, however, been tantalising signs that new treatments could be on the horizon.A study published this month in the journal Nature found that compounds called cyclodextrins could reduce swelling and even help repair damaged lymphatic vessels.The findings generated considerable excitement, but the research has so far been carried out only in mice – meaning it could be years before it is known whether the approach works in humans.For Jacqueline, who has lived with lymphoedema for two decades, learning how to manage the condition has improved not only her mobility, but also her confidence and the way she feels about her body.‘Managing my lymphoedema has even changed how I dress. I used to try and hide my body, but I wear dresses and sandals now,’ she says.‘It can be quite debilitating and it definitely does affect your confidence, but I think the more awareness that’s out there, the better.‘When I started this journey nearly 20 years ago, there wasn’t a lot of information out there.‘As time has gone on, understanding has got a lot better and GPs are recognising lymphoedema more and more. There’s not one quick fix, but through a combination of things I’ve been able to improve my symptoms.’