It’s a condition that is often mistaken for obesity, and can leave women feeling ashamed or embarrassed about their bodies.
But 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?
What is Lipoedema?
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 larger. It can sometimes include fat buildup in the arms.
It can make the skin appear lumpy or have nodules, and can make the skin 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 10 women have it.
While it is quite common, Lipoedema UK says there has been little research into the condition since it was first named in the 1940s, including into its causes and treatments.
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 what the condition looked like.
“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.
“In this picture 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 damaging to continue treating women as if it’s their fault.”
Just found a picture of me from Dubai 2017 and it is such a clear example of what #Lipoedema looks like. 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.
— Shaughna Phillips (@Shaughna_P) January 24, 2022
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, which can be sensitive and easy to bruise.
In stage 2, the skin is more visibly pebbly or dimpled, and in stage 3 larger 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.
How is it treated?
While it is a condition that 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.
But while lipoedema cannot be cured with diet, it’s still good to maintain a healthy diet and exercise regime as it can help prevent the condition from getting worse, according to the NHS.
At the moment, there is also no cure, but there are some treatments that can help manage symptoms.
Compression garments can help manage the condition for people who feel pain and heaviness from it, and they also help support the joints and can reduce swelling. Manual lymphatic drainage can also relieve symptoms.
Liposuction is also a treatment option, but it is not often available on the NHS.
Lipoedema UK says there is also a difference between cosmetic liposuction and non-cosmetic liposuction used to treat lipoedema, and that the cosmetic version could cause long-term damage to affected areas.
The organisation also notes liposuction was rarely a one-off treatment, and some patients would need to 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 very carefully before you go ahead. It can be expensive, the results cannot be guaranteed, and there are risks to consider. Speak to your GP about it.”
What to do if you think you have Lipoedema
Lipoedema UK says it can also be difficult to get a diagnosis because there is limited medical understanding about the condition.
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 important for women to get an early diagnosis so they can begin to manage symptoms in the best way for them.
“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 in with your GP, who 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.
