A missed opportunity to diagnose lymphoedema – Rolf’s story

Rolf is a semi-retired civil servant and Cross Fit instructor who lives in Nottinghamshire. His story begins back in the 1970s when he was just 13 years old:

“I was quite a sporty youngster, always involved in team sports, especially rugby.”

Swollen ankles raise the alarm

When I was about 13, my mum noticed my ankles were swollen. We went to the doctors and they said I’d better go to the hospital. At the hospital, they checked me for kidney disease but that didn’t show anything. I had some prominent veins, so they thought it was possibly varicose veins that were causing the problem. I had an operation to strip a couple of veins out, but this made no difference at all. The swelling just gradually got worse as I went through my teens and my early 20s”

A missed opportunity to diagnose lymphoedema

This chronic swelling – which Rolf and his doctors at the time did not realise was actually lymphoedema – had a big impact on all aspects of Rolf’s life as a young man:

“I got teased a bit. I was very self-conscious of it. It was always something in the back of my mind. You’d be going out with a girl, and she’d ask why you never wore shorts. That kind of thing”

Without a diagnosis and treatment, Rolf’s lymphoedema grew worse and worse until things reached a critical point in his early 40s:

“I’d had a fairly active job in my 20s and 30s, which helped reduce the swelling a bit, but I then got a sedentary office job, and my legs became immeasurably worse. I thought, ‘I’ve got to do something about this. I can’t keep having made to measure trousers and all sorts of other accommodations’. The only thing that I was doing to help myself at the time was to keep my feet up like it was my job. And any time I got the opportunity to put the feet above my hips, I would do that to just drain the fluid. I went to the doctor, and I said to them ‘I’ve had this problem for a long time – there must be something we can do?’ but they just told me it was district nurses that deal with this sort of thing. It just felt hopeless.

A life-changing referral to a lymphoedema clinic

It was at this point – nearly 30 years on from when Rolf’s lymphoedema began – that a breakthrough happened:

“I was introduced to a district nurse who asked me whether I’d been to the lymphoedema clinic at the Derby Royal Infirmary. This was the first time I’d heard of a lymphoedema clinic. I was both delighted and angry to find this place. Delighted because it was the first time in my life, I could get the specialist treatment I desperately needed. Angry because it’d taken so long to get the right treatment and I’d spent decades of my life trying to manage the condition on my own”

Rolf began compression therapy for the first time and the results were transformative:

“I was going into the clinic every day to have my bandages changed. Over a period of about two weeks, they drained a ridiculous amount of fluid out of my legs. Suddenly I had ankles again. My legs looked, to all intents and purposes, normal. It was just an absolute game changer. They followed that up with proper compression hosiery – not the over-the-counter compression socks for varicose veins, but medical grade compression. That was the start of everything getting massively better.

“It had a big effect on my self-confidence. I could stop having all my trousers specially made, and I wasn’t worried about people staring at my legs. It also got me thinking about the rest of my health. I started to go to the gym and work on my overall fitness. When you start feeling better about yourself, it has a knock-on effect on everything, and you want to take good care of yourself”

Enjoying the benefits of compression therapy

Now – twenty years on from his first visit to the compression clinic – Rolf is the fittest he’s ever been:

“I went from being five stone overweight and seriously unfit, to the best shape of my life. Ten years ago, I was introduced to CrossFit, which is a high intensity interval training. It was the first time for a long time that I’d done anything that really changed my body. I loved it so much that I became a Cross Fit trainer. I now focus on helping people who, like me are 50+, discover or rediscover exercise and am enjoying the huge benefits of physical activity. What people don’t realise is that once you hit 50, you need to start paying into your ‘physical pension’ and develop some strength and resilience”

Rolf’s advice for anyone with chronic swelling is to not delay in taking action:

“Fortunately, lymphoedema awareness has come on leaps and bounds since I was a young lad and people are being diagnosed and treated much quicker. My advice to anyone who has chronic swelling is to not ignore it. Go to the GP and get referred for treatment. The earlier you can get an intervention, the better. If you just ignore it, it will get worse, and every part of your life will be affected”

Where’s the harm in that?

Failure to recognise ankle swelling as lymphoedema denied Rolf treatment that transformed his life for 30 years. The negative impact on his self-confidence, behaviour, relationships and limitations to his activities, general health and life opportunities inflicted long-standing and unnecessary physical and psychological harm. Thanks to a district nurse who recognised the problem and suggested a referral to a lymphoedema specialist, Rolf had treatment that enabled him to turn his life around

Want to know more?

Find out more about lymphoedema including what to look out for

Read more about lymphoedema