What is Lipoedema?

The condition affects 1 in 10 women with symptoms mistaken for obesity.

It’s a condition that is often mistaken for obesity and can leave women feeling ashamed or embarrassed about their bodies.

However, lipoedema, as former Love Island star Shaughna Phillips has pointed out, is not the fault of women who have it.

What is the condition, and what can be done about it?

Lipoedema is a chronic condition caused by abnormal body fat. These excess abnormal fat cells typically build up in the legs, hips and bottom, often making the lower body appear more prominent. It can sometimes include fat buildup in the arms.

It can make the skin appear lumpy or have nodules, making it more sensitive to touch or bruising.

It’s a condition that only affects women, and while the NHS doesn’t know exactly how many are affected, Lipoedema UK estimates that up to one in ten women have it and it affects the lower body.

While it is standard, Lipoedema UK says little research has been done on the condition, including its causes and treatments, since it was first named in the 1940s.

What little researchers agree on about the condition is that it is very likely a genetic condition, with many women in the same family often affected by it. It is a hormonal condition, and it usually begins to develop around puberty, around pregnancy or during menopause.

What has Love Island star Shaughna Phillips said about having the condition?

Ms Phillips shared a photo of herself on Twitter, saying it was “such a clear example” of the condition. “How anyone can accuse sufferers of being lazy/fat is beyond me. It is a medical condition that 1/11 women suffer with, often in silence, often misdiagnosed,” she wrote in 2022. “I was struggling with an eating disorder. I was underweight. I was torturing myself in the gym. Yet my legs were getting bigger and bigger. Lipoedema has nothing to do with being overweight. So, it is damaging to continue treating women as if it’s their fault.”

What are the symptoms of Lipoedema?

There are three stages of lipoedema.

In the first stage, the skin can appear smooth, but small lumpy nodules can be felt under the skin. These nodules can be sensitive and easily bruised.

In stage 2, the skin is more visibly pebbly or dimpled, and in stage 3, more extensive irregular fat deposits can form around thighs and knees.

Lipoedema can cause joint pain and heaviness in the affected limbs, and in the later stages, it can lead to more severe mobility and joint issues.

The body changes caused by lipoedema can also lead to self-esteem issues and feelings of shame, embarrassment, anxiety and depression.

Lipoedema can vary in severity (Wikimedia/Borgardottir)

How is it treated?

While it affects body fat because the fat cells in lipoedema are disordered, dieting and exercise do not affect it the same way those measures help with normal fat loss.

However, while diet cannot cure lipoedema, the NHS recommends maintaining a healthy diet and exercise regime to help prevent the condition from worsening.

There is no cure now, but some treatments can help manage symptoms.

Compression garments can help manage symptoms for people who feel pain and heaviness. They also help support the joints and can reduce swelling. Manual lymphatic drainage can also relieve symptoms.

Liposuction is also a treatment option but is not often available on the NHS.

Lipoedema UK also says there is a difference between cosmetic liposuction and non-cosmetic liposuction used to treat lipoedema, and the cosmetic version could cause long-term damage to affected areas.

The organisation also notes that liposuction is rarely a one-off treatment, and some patients must wear compression garments long-term following the procedure to maintain the results.

The NHS says: “If you're considering having liposuction for cosmetic reasons, think carefully before proceeding. It can be expensive, the results cannot be guaranteed, and all the risks must be considered. Speak to your GP about it.”

What to do if you think you have Lipoedema

Lipoedema UK says getting a diagnosis can also be challenging because the condition is poorly understood medically.

A 2021 survey by the organisation found that while 57 per cent of respondents had experienced symptoms from puberty, only 2 per cent had received a diagnosis. The majority said they didn’t get a diagnosis until after 40.

Despite this, Lipoedema UK says it is essential for women to get an early diagnosis to manage their symptoms as best they can.

“Many people with Lipoedema describe a feeling of relief when they receive their diagnosis because it acknowledges that their symptoms are not the result of lifestyle choices,” Lipoedema UK says.

The organisation suggests tracking symptoms and gathering as much information as possible about the condition before booking an appointment with your GP. Your GP may then refer you to a specialist service, including a lymphoedema clinic these specialist services can also help people manage lipoedema.

Some private clinics could also help diagnose and support people who believe they have lipoedema.

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