It causes thick, heavy legs, can dramatically affect your self-confidence and many of us don't know we have it. Now Love Island’s Shaughna Phillips has gone public about lipoedema, throwing the condition into the spotlight. Three women tell us what it living with it feels like

Any products in this article have been selected editorially however if you buy something we mention, we may earn commission

When Love Island 2020 star Shaughna Phillips revealed this week that she had undergone liposuction fat removal surgery on her legs, people were quick to call her vain and lazy. But her procedure was nothing to do with vanity, she responded. It was to treat lipoedema is a little-known condition, which leaves the legs (most commonly the calves) looking ‘trunk-like’ even if the rest of the body is petite. It is caused by an abnormal build-up of fat cells and can be both painful and mentally draining, causing heavy, itchy limbs and feelings of self-consciousness.

Shaughna, who had been repeatedly trolled on Instagram for the size of her calves, was only recently diagnosed with the condition after leaving the show in January. The lipoedema community, however, recognised the condition as soon as she set foot in the reality TV villa.

Among those who noticed that Shaughna had the condition was Zoe Pearce who suffers from lipoedema and runs an Instagram account called Thick Thighs Positive Vibes  with 20k followers. “When Shaughna appeared on Love Island, the lipoedema community went into a frenzy,” says Zoe, 28, a mother and influencer from Teesside. “If you didn’t know about lipoedema, you probably wouldn’t have even realised.” Although Shaughna posts beautiful photos on Instagram, says Zoe, “the comments can be vile [such as] ‘what is wrong with your legs?’”

Shaughna went public to her 1.5 million Instagram followers with her condition this week. She called lipoedema the “worst thing in the world” saying that she’d been self-conscious about her legs since she was 14.

She has helped to shed light on an underdiagnosed condition that affects an astonishing 11 per cent of all adult women (it doesn’t affect men, it’s not known why according to Dr Tiina Meder of Meder Beauty Science , who has specialised in lipoedema, although like cellulite it’s thought to be linked to female hormones).

What is lipoedema?

Lipoedema (or lipedema if you are in the US) is a build-up of fat cells found in the legs, hips, buttocks and sometimes the arms. It doesn't typically affect the abdomen and many people with the condition can be contrastingly very slender from the waist up.

“Lipoedema literally means ‘fluid in fat’,” explains Naomi Northen-Ellis another sufferer and director of Compression Therapy UK , a non-surgical treatment for lipoedema. “The condition is caused by leakage of small amounts of fluid from the blood capillaries in the skin. If you suffer from lipoedema, this leakage can't be absorbed resulting in the fluid sitting between the fat cells and causing inflammation.”

Sufferers can have a healthy lifestyle, exercising regularly and eating well yet still be unable to shift the trunk-like appearance of their legs.

Lipoedema often goes undiagnosed, as former journalist Louise, 32 explains. Like many women, she developed it in her teens. “It took me around three years to find a diagnosis. I went to numerous NHS GPs, who all agreed that my lower limbs were significantly out of proportion to my upper body. Sadly, none had any idea of the cause so I left each time feeling deeply disheartened.” Louise asked us not to use her real name, because it’s an emotive condition that she, like many who have it, keeps private.

“I tried everything I could to become what the media classed as 'beautiful',” says Zoe. “I wanted to be slimmer and weight would come off elsewhere but my legs wouldn't change.”

It was an experience shared by Shaughna too, who recently documented her four-stone weight loss (since 2016) on Instagram, adding later it had made no difference to her calves.

“Living with lipoedema is an emotional roller-coaster and there continues to be very little understanding about it. Even though it is a recognised medical condition, many people are told by their doctors to go away and lose weight or are not believed when they tell their doctor how strict they are with their diet,” explains Naomi.

What are the signs and symptoms of lipoedema?

According to charity Lipoedema UK  signs you might have lipoedema are:

– Excess weight on your legs

– Heaviness and discomfort of the legs

– Your upper body and lower body are completely different sizes

– You have a small waist, but large hips and thighs

– Your excess weight does not include your feet or hands

– You can lose weight from your upper body but not your lower

– Your lower body bruises easily

– Some members of your family are or were a similar shape

What does lipoedema feel like?

In a word – heavy. “It makes it feel like your legs aren’t yours,” Zoe tells us. “They fizz and sometimes it feels like bugs are crawling up and down my legs. I also have it in my arms, and they are heavy and sensitive too.”

Louise adds: “I’d experience shooting pains and I’d always say that my legs feel the same way your stomach does after eating Christmas dinner.”

“Areas affected by lipoedema can be very painful to the touch”, says Naomi. “Easy bruising is another identifier of the condition because the blood capillaries are so fragile.”

The mental health effects of lipoedema

The effect on mental health of being undiagnosed is as much of an issue as the heavy, uncomfortable legs, according to those with the condition.

“I actually felt like I was going mad because I was trying my best to seek the cause, but was getting absolutely nowhere with medical professionals,” Louise explains. “My self-esteem was dropping by the day. I became so self-conscious about the appearance of my legs that I refused to wear skirts and dresses. I dreaded social engagements and I never knew what to wear to meet friends as I didn't feel comfortable in any of my clothes. I was also convinced everyone else could see my lipoedema so did what I could to hide it.

“I couldn’t understand how it was possible to do HIIT, walk well over the daily recommendation of 10,000 steps, cycle, swim and follow a balanced diet without anything making a difference to my legs.”

Finally getting a diagnosis was a turning point for Louise, who told us: “After seeing a private GP and a rheumatologist I was eventually referred to dermatologist Professor Mortimer of St George’s Hospital, London and he diagnosed me with lipoedema seconds after I walked into his room. The immense feeling of relief I felt at finally having a diagnosis is something I’ll never forget. My now-husband and I went for brunch to celebrate the news straight after my appointment!”

Zoe agreed, sharing: “Having a name for what was happening to my body could have stopped years of self-hate, years of punishing my body, years of thinking it's all my fault. I felt relieved when I was diagnosed however I did feel confused as I had never heard of this condition before and neither had my family."

Treatments for lipoedema

There’s not a ‘cure’ for Lipoedema, but there are treatments to help manage the condition.

Liposuction for lipoedema

Shaughna and Louise have both undergone liposuction for lipoedema, with Louise opting for ‘tumescent’ liposuction which is performed under local anaesthetic. She has had four sessions so far, with at least one more to go and her lower limbs are now unrecognisable. It's important to note that it’s a major procedure that may not be right for everyone and some people may not even want to opt for a surgical treatment. “Liposuction helps to remove the painful hyper-growth fat of lipoedema,” explains Dr Tiina Meder. For Louise, liposuction improved her quality of life in a way she never thought possible but the treatment is currently not available on the NHS.

It’s not without its stigma either, with trolls calling Shaughna’s decision “chronic narcissism” and “another lazy girl taking the easy way out”. Shaughna has been keeping followers updated with her post-surgery journey, sharing videos of her bandaged legs and saying she’s struggling to walk following her procedure.

“Currently lipoedema surgery isn't seen as a necessity, but hopefully one day women suffering from the condition will be able to receive treatments without the financial burden and unfair labels of vanity and laziness that currently exist,” says Dr Tiina.

Compression therapy for lipoedema

Decompression therapy can be used to help manage lipoedema via regular lymphatic drainage to reduce fluid and inflammation, increase blood flow and reduce the size of the legs.   You lie down wearing a compression garment  - which looks like inflatable dungarees – which squeezes and releases, rather like a blood pressure monitor. explains Naomi. “You are aware of the gentle pumping action but it is really comfortable and relaxing. I am generally asleep within minutes and wake feeling lighter, refreshed and full of energy.”

It can be done in salons or you can buy the device for home. Louise has recently started using the Lympha-Press  at home and within a week noticed significant improvement in the appearance of her legs.

“The system allows individuals to have some control over the management of their condition and help to overcome the emotional trauma associated with lipoedema,” says Naomi.

Dry body brushing  to encourage lymphatic drainage is another short-term option and Legology’s Cellu-Lite 8-Week Plan  has been praised for helping women suffering with lipoedema feel lighter in their legs. Zoe said that swimming helped her but acknowledges that can be difficult if you’re self-conscious about your legs. “After years of hating myself, I'm focusing on learning to accept this is me,” she says. “As long as I try to be as healthy as possible, I know I'm doing my best. If people have a problem with my legs it says more about them than it does about me. Having lipoedema doesn't have to mean your life is over. However you feel, you aren't alone, there are thousands of women out there feeling the same. Some might know why, some might not so it’s important to raise awareness and help as much as possible.”

Follow Zoe on Instagram

Visit Lipoedema UK for more information