What is lipoedema?

Lipoedema is a chronic (long-term) health condition that causes an abnormal build up of adipose (fatty) tissue in the body.

Lipoedema usually affects the legs, thighs and buttocks but it can also impact the arms. Lipoedema can cause significant pain and swelling. Females are more often affected by lipoedema than males. It is thought to affect around 1 in 9 females in Australia.

Lipoedema usually starts during times of hormonal change like puberty, pregnancy, in vitro fertilisation (IVF) and menopause. There is no conclusive research to say whether taking the oral contraceptive pill influences lipoedema. Some people have noticed the beginning of, or an increase in lipoedema, while taking the oral contraceptive pill, and other people have not seen any changes.

The way that lipoedema changes your body over time is not fully understood. It is different for each person. For some people, the disease progresses quickly and severely. For others, the only symptom is a minor increase in subcutaneous fat (fat under the skin) that remains stable for many years.

What are the symptoms of lipoedema?

The symptoms of lipoedema vary. Not all people with lipoedema experience all symptoms to the same degree. If you have lipoedema, you might have some or all of the common symptoms. They include:

• build up of fatty tissue in legs, buttocks, thighs and sometimes upper arms
• fat rings around ankles — feet usually appear normal
• swelling of the legs (oedema)
• easily bruised
• increased joint flexibility, which can develop into arthritis (joint inflammation)
• appearance of lumpy, nodular fat in other areas of body, including abdomen, groin, breasts and scalp
• sensation of heaviness, achiness or discomfort in affected areas
• affected areas that are sensitive to touch and often feel cold
• reduced hair growth on affected areas

What causes lipoedema?

The cause of lipoedema is not known. One possible cause includes genetic inheritance. This means that you are more likely to have lipoedema if someone in your family has it. Other body processes that are thought to be involved in the development of lipoedema include hormonal changes and inflammatory processes (when your body's immune system is triggered).

Lipoedema is not the same as obesity or lymphoedema, but they may seem similar and can coexist with lipoedema.

When should I see my doctor?

You should see you doctor if you have any of the symptoms of lipoedema such as leg swelling, pain, bruising or skin changes. It is important to remember that leg swelling can be caused by other medical conditions. If your legs, ankles or feet become swollen, red, hot, painful or you feel generally unwell, you should see your doctor as soon as possible.

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How is lipoedema diagnosed?

Your doctor can diagnose lipoedema by asking you about your medical history and giving you a physical health examination. Currently, there are no known medical tests to diagnose lipoedema.

Lipoedema is often not diagnosed until you start to have complications from the condition. It's easy to confuse lipoedema with other health conditions, such as obesity and lymphoedema, which can coexist with lipoedema.

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How is lipoedema managed?

There is no cure for lipoedema but there are things you can do help manage your symptoms and prevent it from getting worse. Management of lipoedema often involves seeing different healthcare professionals to help you get the best outcomes. They can include a lipoedema specialist clinician, physiotherapist, occupational therapist and dietitian.

• Manage your pain — It is especially important to talk with your doctor how to manage your pain effectively. You may need a combination of different medicines to help control your pain successfully.
• Eat well — It is important to eat healthy foods and maintain a healthy weight. A dietitian can help you understand what foods are best to eat and what foods to avoid.
• Improve lymphatic flow — Try compression therapy to help reduce pain, improve movement and reduce fluid formation. The most used type is the compression garment. Other treatments include different types of massage, such as manual lymphatic drainage.
• Engage in low impact exercise — Do regular exercise such as water-based exercise, cycling, exercise on a vibration plate or rebounder, and Nordic pole walking.
• Protect your skin from dryness — Look after you skin by moisturising it regularly to help prevent your skin from drying out.
• Look after your mental and emotional wellness — Living with a chronic illness can be emotionally challenging for both you and your family. Counselling or another form of psychological support like cognitive behaviour therapy may help.

If your symptoms are very severe or don't respond well to the above recommend methods, you may need a surgical procedure, such as liposuction, to reduce excess tissue. You should talk with your doctor to work out what is suitable for you.

Can lipoedema be prevented?

Lipoedema cannot be prevented. Your healthcare professional will help you to manage your condition. They will focus on preventing the lipoedema from progressing or getting worse. Maintaining a healthy weight, looking after your general health and wellbeing are all extremely important in managing lipoedema and preventing complications.

What are the complications of lipoedema?

As lipoedema progresses, more fat may accumulate in your legs, buttocks, arms and torso. This can lead to complications, such as:

• Cellulitis (a skin infection) — poor lymphatic drainage and the development of lymphoedema can make you more susceptible to skin infections.
• Joint pain and osteoarthritis — extra weight due to fat and fluid build up can lead to extra pressure on joints, especially if your posture changes to make walking easier.
• Chronic diseases — carrying extra body weight can put you at risk of other chronic health conditions like diabetes and heart disease.
• Reduced mobility — your ability to move freely and easily may be reduced due to pain, heavy legs or cellulitis.
• Poor mental health — lipoedema can negatively impact your mental health and may cause episodes of depression, low self-esteem and eating disorders.

The sooner you get a diagnosis for lipoedema, the sooner you can begin to manage it. This will help reduce to the risk of developing complications.

Resources and support

Lipoedema Australia is the national peak body for Lipoedema. This organisation provides information about lipoedema to both patients and medical staff, supports lipoedema research and has a closed Facebook group for people living with lipoedema. See the Lipoedema Australia website for more information.

You can also call healthdirect on 1800 022 222 at any time to speak to a registered nurse (known as NURSE-ON-CALL in Victoria) for more information and advice.