Lipoedema, the painful condition you’ve probably never heard of

Chances are, you’ve probably never heard of lipoedema, or what the condition involves.

It’s thought to affect 11 per cent of women and those assigned female at birth. 

The ABC has heard from dozens of women with the condition who live in chronic pain, often being dismissed and judged by the health system because they appear overweight.

But lipoedema has nothing to do with obesity.

Okay, so what exactly is lipoedema? 

In short, it’s a hereditary, connective tissue disorder that usually develops in puberty — and very rarely affects men. 

Xanthia sits confidently by the side of a pool, holding the back of her hand to her forehead and looking into the distance.

It can also be triggered during hormonal stages such as pregnancy and menopause. 

Dr Tara Karnezis, one of the world’s leading researchers on lipoedema at St Vincent’s Hospital in Melbourne, explains it as the “abnormal accumulation and distribution of fat” in a person’s limbs.

Usually these fat cells continue to grow and expand around the legs — and sometimes the upper arms — but experts aren’t quite sure why. 

This lipoedema fat continues to grow to a point where the condition can become debilitating for patients. 

It’s also important to remember that, although lipoedema can contribute to obesity — or a person with obesity can suffer from lipoedema — they are separate conditions.  

“It has absolutely nothing to do with diet, exercise, or restrictive calorie intake,” says Dr Karnezis.

During stage one of lipoedema, you’ll notice physical changes in your body — as well as sensitivity and some pain.

However, if you are not diagnosed early, the fat cells continue to grow to the point where, by stage four, you could lose the ability to walk. 

Why have I never heard of this condition?

Well, there hasn’t been much research on the disease to date. 

This means its true prevalence is unknown. 

A lack of research funding also means a lack of awareness and understanding by frontline health professionals, Dr Karnezis says. 

“Because awareness and diagnosis is so poor, the actual numbers could be 1 per cent or 15 per cent of a population,” she explains.

“[Clinicians and GPs] need to be able to differentiate lipoedema [from regular fat].”

Dr Karnezis says that is not happening at the moment.

That is why she and her team are working on diagnostic tools to make it easier to identify and treat the condition in its early stages. 

Currently, lipoedema is not recognised by Medicare and patients say they are forking out many thousands of dollars for treatments. 

What are the symptoms?

Body shape and disproportionate fat on the limbs are the telltale signs of lipoedema. 

The skin often also appears dimply, and lipoedema patients sometimes describe themselves as “bottom-heavy” or “pear-shaped”. 

Because of the way lipoedema fat is stored, legs can appear heavy and cylindrical — a dramatic contrast to what is usually a regular-sized ankle. 

Three women, visible from behind, are linking arms as they show people their bodies.
The disease almost exclusively affects women and those assigned female at birth. (Supplied: Attic Salt Photography)

In some cases, people with lipoedema might experience extreme weight loss, but that often leads to an emaciated upper body and very minimal weight loss below the waist.   

Lipoedema is also often associated with swelling and extreme nerve sensitivity, causing chronic pain and mobility issues. 

Fragile blood vessels also means more bruising, more often.

Because of an excess of lymphatic fluid and allodynia nerve pain, legs can become extremely painful to the touch.

With disproportionate weight distribution also comes back pain.  

“That’s exactly why you see patients with abnormal gait, hip issues and, eventually, the use of wheelchairs,” Dr Karnezis says.

What should I do if I think I have lipoedema?

The first thing to do is get properly assessed and diagnosed, starting with your GP.

From there, you will be referred to specialists and allied health professionals who can discuss how to manage the symptoms.

Treatment options vary depending on severity.

For some patients, partial or full-body compression garments help with swelling, mobility and pain. Compression pump suits are also an option, but are more expensive. 

Some people choose to have specialised liposuction surgery to remove the excess abnormal fat — again, to help with pain and mobility. 

While a low-inflammation diet may help, traditional weight-loss approaches such as intermittent fasting or calorie-cutting do not work because lipoedema fat is almost impossible to budge.   

As Dr Karnezis points out, you will not see much difference from making major changes to your lifestyle or diet.

“Normal fat loss responds to a restriction of calories, but those fat cells in lipoedema don’t respond this way,” she says. 

“Some doctors classify it as obesity. But patients have tried every diet under the sun,” she says.  

Dr Karnezis says that while health professionals and the research community have improved their understanding of the disease in recent years, there is still much more work to do.

“Having women diagnosed at an early stage will help them understand their condition and have them not feel like it’s their fault,” she says.

“They’ll feel more in control. When you understand what’s going on in your body, you can manage it.”

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