What is lipoedema?

The swelling typically affects the lower limbs (legs, thighs, buttocks) and sometimes the arms. Both limbs are affected and the swelling is usually symmetrical in shape and size. The area of the body above the naval (or belly button), the head, neck, hands and feet remain unaffected. This often results in shape disproportion – a narrow waist and large hips. The area is often painful and tender to the touch. Bruising is common and seems unrelated to trauma or injury). The area looks and feels different to normal body fat. It appears softer and may be dimpled like cellulite.  

The swelling typically affects the lower limbs (legs, thighs, buttocks) and sometimes the arms. Both limbs are affected and the swelling is usually symmetrical in shape and size. The area of the body above the naval (or belly button), the head, neck, hands and feet remain unaffected. This often results in shape disproportion – a narrow waist and large hips. The area is often painful and tender to the touch. Bruising is common and seems unrelated to trauma or injury). The area looks and feels different to normal body fat. It appears softer and may be dimpled like cellulite.  

Lipoedema appears to be almost exclusive to women. It often presents at puberty or around times of hormonal change such as, pregnancy, use of oral contraceptives or the menopause. Signs of the condition have also been reported after periods of significant weight gain.  

The underlying cause of lipoedema is as yet unclear, multiple factors are thought to be responsible. There is evidence that there may be a genetic predisposition to the condition. Investigative research continues into the genetics of the condition at St George’s Hospital in London.  

Lipoedema is thought to impact at least 1 in 72,000 women. However, this is thought to be under estimated and further research is required to establish exactly how many women are affected. Limited evidence is currently available because the condition is often unrecognised, misunderstood or misdiagnosed by GP’s and healthcare professionals. Awareness of the condition is growing through education for GP’s and healthcare professionals. Lipoedema is often mistaken for obesity and many women are given advised to lose weight. This will reduce fat from the body but not the lipoedema fat as this is thought to be very different in its composition. A mis-diagnosis of lymphoedema is sometimes given especially if there is evidence of oedema (fluid) within the tissues. However, there are also those who are diagnosed with lipoedema even though they do not meet the criteria for the condition.  

Assessment from a healthcare professional is extremely important to ensure any other exacerbating features/conditions are ruled out and an accurate diagnosis given. Some GPs may not be aware lipoedema therefore, it is recommended you take information about lipoedema to your appointment.  

Lipoedema UK (www.lipoedema.co.uk) collaborated with the Royal College of General Practitioners (RCGP) and put together a course to help GPs better understand lipoedema, and how to help those diagnosed with the condition.