For decades Pai Masendu believed she simply had ‘fat legs’ that were out of proportion to the rest of her body – but it wasn’t only their size that bothered her.
They also constantly ached and were prone to bruising, and no amount of dieting or exercise seemed to help.
One year she lost three stone, but she says, ‘while my collarbone stuck out and my face was thin, my legs and arms never lost any weight’.
‘People complimented me on my smaller waist and hourglass figure, but I’d have to buy clothes that were two to three sizes too big for me just to fit my legs into them.
‘The waist would be gaping, I’d have to use safety pins on the waistband to keep my trousers up.’
Pai, 51, a council officer from Norwich, also had similar stubborn, lumpy fat on her arms – as with her legs, they bruised easily and were marked by spider veins.
But it was the discomfort from her legs that upset her most.
Pai Masendu, 51, spent her life believing she just had ‘fat legs’ and her concerns were dismissed – until she discovered the cause was lipoedema
The council officer from Norwich could feel her mobility declining, and was burdened by a painful dragging sensation in her legs
‘I kept going to the doctor about it but was always told my big legs were just fat, and that I needed to lose weight,’ says Pai.
‘I felt so frustrated as they didn’t seem to understand that it wasn’t what my legs looked like that bothered me so much, but the dragging pain.’
There was a reason for it. Pai’s larger legs and arms were due to a common, but little-known medical condition – lipoedema (also known as painful fat syndrome).
It occurs when abnormal, bumpy fat (you can feel lumps under the skin) builds up, usually in the legs, buttocks and thighs, but also sometimes in the arms.
Lipoedema fat cells are unusual in that ‘they don’t respond to diet and exercise in the way that normal fat does – it is not known why – so although you can lose weight on your upper body, the areas affected by lipoedema don’t tend to get any smaller’, explains Dr Puneet Gupta, a GP and founder of Lipoedema World Alliance, a not-for-profit organisation that works to improve awareness of the condition.
Those affected – predominately women – often develop ‘cankles’, where lumpy fat overhangs their ankles, or bulging fat hanging over the knees or ‘saddle bags’ of fat hanging off the thighs.
Lipoedema isn’t simply a cosmetic problem – unlike cellulite (lumps of fat under the skin), it can lead to pain and additional swelling in the limbs, causing a heavy dragging sensation (if it’s in the legs), adds Dr Gupta.
‘The skin can also bruise easily due to pressure on fine blood vessels from the extra fat cells, which then become very fragile, so that even a small knock can cause widespread bruising.’
Varicose veins and spider veins are another feature.
As many as one in ten women (over three million women in the UK) is thought to be affected, although Dr Gupta, who runs a private lipoedema clinic in London, says the real figure may be higher, based ‘on my clinical experience but also the women I see every day on the street or on holiday, it is so common’.
While the exact cause is unknown, between 20 and 60 per cent of women affected have a relative who has lipoedema, suggesting genes are involved.
Weight gain is another possible trigger as it is more common in women who are obese (although you can be slim and still have lipoedema).
‘Symptoms also seem to be triggered by hormone blips such as puberty, during pregnancy and the menopause, but exactly when it starts can vary hugely – some women start with symptoms at puberty and it progresses through their whole life, but others won’t have any symptoms until their menopause,’ says Dr Gupta.
It can get progressively worse without treatment (although not in all cases), progressing from smooth skin with small lumps of fat to ‘orange peel’ skin with lumps ranging from the size of a walnut to an apple.
In later stages, fluid can build up in the affected area, known as secondary lymphoedema.
In severe cases lipoedema puts joints under such pressure that it can lead to the need for knee and hip replacements.
And delayed diagnosis or misdiagnosis is common, says Dr Gupta, as doctors aren’t taught about the condition at medical school, so ‘very few are aware of the condition’.
‘A lot of these women are dismissed as being obese and told to lose weight,’ he says. ‘Some of them do lose several stone but their legs don’t change shape.’
Pai’s arms are pictured 9 months before she underwent liposuction at a cost of £31,000
Lipoedema occurs when abnormal, bumpy fat (you can feel lumps under the skin) builds up, usually in the legs, buttocks and thighs, but also sometimes in the arms
By her mid-40s, Pai’s legs were so heavy and painful that she struggled to lift them up to get into the bath.
‘I literally had to pick up each leg, they felt like I had bags of sugar attached to each ankle,’ says Pai.
Even when she decided to ‘go for it’ with an intense exercise programme it made no difference.
‘I was exercising like a mad woman – going to the gym five or six times a week and walking everywhere, plus healthy eating and training as a Zumba instructor,’ she says.
‘I was going to the GP saying, “look I’m doing all this, and the fat is not shifting”. I wanted to show them that my fat legs and arms were not my fault, but one doctor just said I should starve myself.’
Pai was only diagnosed after a colleague, who was surprised her exercise regimen was having so little effect, sent her a link to information about lipoedema.
‘When I started reading about the symptoms, I ticked every box,’ says Pai.
Armed with this information Pai went back to her GP in January 2022 who agreed to refer her to a specialist clinic.
‘The nurse at the clinic confirmed I had lipoedema,’ says Pai. ‘Finally at the age of 49 – after more than 35 years of symptoms – I had the answer to why my legs were so big.’
Treatments for the condition include wearing compression garments and a type of massage called manual lymphatic drainage to reduce fluid build-up.
Liposuction, where a tube is inserted through incisions in the skin, and a vacuum is used to suck out the fat cells is another option.
The treatment is only available on the NHS in limited circumstances, following the death of a lipoedema patient at the private Spire Park Hospital in Solihull in 2019. (A coroner found the cause of death was fat embolism syndrome, where fat that’s being sucked out gets into the bloodstream and blocks blood flow.)
In 2022 the National Institute of Health and Care Excellence (NICE) recommended liposuction for lipoedema should only be done as part of a research trial, citing ‘inadequate’ evidence for its safety.
So although liposuction is still available privately in the UK, most lipoedema treatment on the NHS has now stopped.
Private liposuction procedures can cost anywhere between £5,000 and £8,500 and more than one operation is frequently needed as surgeons tend to concentrate on one area of fat at a time. (A spokesman for Spire Healthcare said it has clear guidelines for liposuction treatment which are in line with NICE guidance.)
After finding little relief from compression garments or lymph drainage massage sessions at £60 per time, Pai used her savings and had help from family and friends to pay to have her lipoedema treated in Germany in October 2023.
‘I was so desperate to get rid of the fat I asked people to give me money towards having liposuction for my 50th birthday rather than a present,’ says Pai.
‘It wasn’t available on the NHS, and I could feel my mobility declining. I had visions of ending up in a wheelchair.’
Pai says her legs were instantly lighter and about half the size after her first liposuction operation, which removed fat from the front of both legs.
She had two more operations in 2024 – one on the back of her legs and the third on her arms, spending a total of £31,000 removing 33 litres of fat.
‘The effects have been life-changing,’ says Pai. ‘I’m teaching Zumba classes and can lead a normal life. My legs and arms still look lumpy, but I’m pain free, and my legs don’t feel heavy.’
Campaigners hope a new trial currently under way at Frankfurt University in Germany, comparing the effectiveness and safety of liposuction to standard treatment will provide the evidence needed for NICE to recommend liposuction once again on the NHS. It is due to report later this year.
A spokesman for the charity Lipoedema UK said ‘recognition is needed that liposuction in lipoedema is a surgical treatment to improve a medical condition that causes pain and disability, rather than a cosmetic procedure’.
Pai is now pain-free but frustrated she waited so long for a diagnosis.
‘I was repeatedly fobbed off by doctors, they just wouldn’t believe me when I said my legs hurt and I wasn’t overeating, they were so quick to judge me,’ she says.
She has a friend with lipoedema who needs a hip replacement because of her condition. ‘Because she has a high bodyweight due to her lipoedema, surgeons won’t do a joint replacement operation, so she is facing increasing mobility problems,’ says Pai.
‘It’s just so frustrating for so many women that liposuction to remove these stubborn fat cells is not available on the NHS.’
- For more information, visit lipoedema.co.uk
