Campaigners are calling for more help on the NHS for a painful and debilitating disorder thought to affect one in ten women.
Lipoedema causes an abnormal build-up of fat cells on legs and arms that can't be broken down by diet or exercise. It's often misdiagnosed for Lymphoedema or obesity.
The only treatment is liposuction but it is almost impossible to get on the NHS because it is classed as cosmetic surgery.
Natalie Hanks from Liverpool was eleven when her legs started to swell in size and became painful to touch.
It would take another 20 years before she was diagnosed with Lipoedema.
Despite dieting and regular exercise, Natalie's legs continued to get bigger. She was bullied at school and developed an eating disorder.
She told ITV Granada Reports: "Throughout my teen years, I always had a small waist but my legs kept on getting bigger and bigger.
"The pain was excruciating. It would just shoot up and down my legs. My mum would take me to the doctors but they would just tell me to go on a diet."
She was 31 when she was finally diagnosed after a stranger came up to her and suggested she might have Lipoedema.
"I didn't believe her but the word was stuck in my head then and when I Googled it a load of things came up and I had all the symptoms - the pain, the shape of the legs, everything that comes with Lipoedema."
What is Lipoedema?
Lipoedema's thought to be hereditary and experts think it's linked to hormones.
Symptoms tend to start at puberty, during pregnancy or menopause. It's often misdiagnosed and mistaken for obesity.
Lipoedema doesn't respond to conventional weight loss methods like diet and exercise.
Natalie, who is a mum of three, decided her only option was to pay for surgery. She's had four operations in three years and spent £40,000.
So far she's lost 26 litres of lipidemic fat and is due to have her final round of surgery in Spain in September.
Natalie said: "I had no option. I knew if I didn't do this I wouldn't be walking soon.
"My legs were becoming that painful, that heavy, that swollen - I probably wouldn't be working either. It had to be done."
Dr Nicki Mazey is a GP specializing in weight management. She also has Lipoedema - something she discovered after a chance conversation with the charity Lipoedema UK.
She also has Lipoedema - something she discovered after a chance conversation with the charity Lipoedema UK.
She said: "It was fascinating and it was shocking and I looked at the pictures and I thought: 'this is all the women in my family and I've probably got a low grade, low type one, type two.'
"I think the problem is people who have this condition are expected to lose that weight and this is a fatty tissue that will not go with weight loss.
Sharie Fetzer from Lipoedema UK said: "The major issue is lack of training and awareness among the entire medical profession which means women are brushed off and basically disbelieved because the medical profession is not looking for a medical condition.
"They just see someone who seems to have a problem with diet and appearance when they should be looking at this as a chronic condition... that can cause serious disabilities.
Since starting her blog- Lippy Legs charting her Lipoedma journey- Natalie's been contacted by hundreds of women- all looking for help and advice.
After years of pain and shame, she wants others to know life can get better.