I’m not fat, I’ve got lipoedema

As told to Jo Deahl of BBC 5 live

It’s a debilitating condition that is reported to affect around 11%, external of women, but even doctors often dismiss lipoedema sufferers as simply 'fat'.

That could be about to change. New research into the disease is now being funded, external, with experts at London’s St George’s Hospital and St George’s at the University of London beginning to explore the genetic basis of the disease, with an aim of finding the cause.

“Apparently my figure was typical of a sufferer - small waist and large hips, with solid, big legs,” says Zoe, 24, from Teesside. She was diagnosed with lipoedema after she lost three stone and noticed that “strangely, no weight was shifting from my legs. In fact, it felt like they were getting bigger.” She made a doctor’s appointment, and a diagnosis eventually followed.

“I’d always known my legs were different - my skin looked dimply and my ankles were non-existent,” she says. “But I didn’t realise it could be something so serious.”

But to Zoe’s dismay, it was.

“I have lipoedema patients in their 20s confined to mobility scooters,” explains Dr Vasu Karri, a Consultant Plastic Surgeon based at East Yorkshire’s The Karri Clinic, who specialises in the condition.

Zoe became pregnant soon after her diagnosis, and her symptoms worsened throughout the pregnancy. “When I was eight months pregnant, my legs felt like they were on fire - my boyfriend couldn’t understand how I was still walking. My legs looked like long balloon animals.”

According to Dr Karri, “Lipoedema is progressive, meaning it gets worse with time. Patients can suffer pain, osteoarthritis and mental health disorders - and sometimes an inability to walk at all.”

It mainly affects women (there have been a few cases in men) and involves an abnormal build-up of fat cells in the legs, thighs and buttocks. While feet are unaffected, sufferers notice their legs becoming enlarged from the ankles to the hips. Their legs feel soft, ‘doughy’ and tender to the touch, and they often bruise easily.

There’s a common misconception that lipoedema is caused by obesity. But, according to Dr Karri, “There’s no strong evidence that diet impacts or influences the disease.”

Aly, 21, from Manchester, was diagnosed with lipoedema last year.

“I follow a plant-based vegan diet, going to the gym regularly,” she says. “I recently ran a 10k obstacle race. But while my waist has always been small, my legs remained big and unshapely.”

“I knew something wasn’t right as I was spending eight hours a week doing HIIT classes and weight-lifting and never ate junk food, yet I hardly shifted any weight. Luckily - and unusually - I don’t get much pain - my surgeon said it’s probably my age. You feel embarrassed for being different, and incredibly low with no confidence.”

There seems to be a genetic component to the condition, and most sufferers find it comes on during puberty, pregnancy or menopause - suggesting hormones are a factor too.

A diagnosis is especially devastating because treatment options are limited. Some patients benefit from compression garments. Zoe says, “During my hospital appointment, I was measured for thick tights I’d have to wear every day for the rest of my life. They took 10 minutes to get on. I sat in my car afterwards crying.”

Manual lymphatic drainage (MLD) and gentle exercise is recommended, too.

“Swimming is one of the best exercises [it increases lymphatic drainage and improves blood flow without putting pressure on joints] but people stare - a woman wading in with a noticeably heavier bottom half and funny-shaped legs…” says Zoe.

Not all GPs are clued-up on the condition, either. “When I described my symptoms, I was wrongly prescribed water tablets, antidepressants and diazepam aka Valium (for anxiety brought on by the condition) and lipoedema wasn’t mentioned. I was eating 1,000 calories a day but my legs were growing. My doctor said my MyFitnessPal app must be broken,” says Charlie, 27, from Wakefield.

The impact of lipoedema on sufferers’ relationships and mental health can be terrible.

“At school I was bullied for stretch marks on my knees and could never find boots to fit my legs,” says Joey, 29, from Barnsley. “Aged 12, I wore a size 10 top and size 16 jeans.” She developed eating disorders, too. “I starved myself – living off an apple and a small Mars bar a day - and was obsessed with weight loss pills and patches. Today I have a size 16 waist with size 22 legs.”

“It’s mentally exhausting,” says Zoe. “It’s had a huge effect on my relationship - during the first year I slept with a cardigan on because it was affecting my arms, too. When my boyfriend touches my legs, I flinch. He’s still amazingly supportive – always telling me I’m gorgeous, even if I don’t feel it. I go to a regular support group run by my hospital – it’s helpful speaking to other women with the condition.”

Aly has had liposuction twice. Because GPs find it hard to receive funding on the NHS, her parents are considering re-mortgaging their home to fund a third operation.

For many, that’s simply not an option. Instead, they’re aiming to love their bodies – whatever shape or size – and rise above the stigma, in the hope that sharing their message results in more awareness and a better understanding of the condition.

However low or isolated sufferers feel, Zoe urges them to “get to your GP and research it.”

There are plenty of online support groups.

“The new funding [into the genetic causes of lipoedema] is a step in the right direction, but it’s a difficult journey for sufferers like me – I hope with the right advice and support, nobody will have to suffer alone.”