Lipoedema

Expert reviewer, Karen O’Hara, Physiotherapist at Bupa
Content editor review by Liz Woolf, May 2021
Next review due May 2024

Lipoedema is a condition that causes abnormal fatty deposits to build up unevenly. It usually affects your hips and thighs, but can sometimes affect your arms. It nearly always affects women. The affected areas are often painful to touch and bruise easily. Unfortunately, there’s no cure for lipoedema, but treatment is available and research is ongoing.

About lipoedema

Lipoedema is pronounced lip-oh-dee-mah. It causes abnormal fat deposits to build up in areas of your body, most often on your hips, buttocks, thighs and knees. It can sometimes affect your arms as well. It doesn’t usually include your hands or feet. Lipoedema usually occurs equally on both sides. Affected areas may look out of proportion with the rest of your body.

Lipoedema can sometimes be confused with a condition called lymphoedema but it’s quite different. Lymphoedema is a build-up of fluid in your tissues and usually only affects a limb on one side of your body. The swelling also often begins in the hand or foot of the affected limb.

Lipoedema is also different from normal weight gain. The affected areas look and feel different. For more information on this, see our section on symptoms below.

Lipoedema is nearly always diagnosed in women but, very rarely, can be found in men. It may affect as many as one in nine women, but we don’t really know how common it is because it’s probably under-diagnosed. This is partly because doctors are rarely trained in lipoedema. The symptoms can also be similar to other health problems.

Types of lipoedema

Doctors group lipoedema into five types, depending on the part of your body affected. Some people have more than one type. These types are:

saddle bag, affecting your pelvis, buttocks and hips
buttocks to knees, with folds of fat on the inside of your knees
full leg – buttocks to ankles
arms
lower leg only

There are several stages of lipoedema. In the earliest stage, the surface of your skin appears normal. But the area just under your skin surface that stores fat is enlarged. As the condition develops, your skin becomes uneven and may look dimpled – like the skin of an orange. In more severe cases of lipoedema, the affected areas become lumpy and change shape. In its most advanced stage, fluid collects in the area as well as fat. This stage is called lipo-lymphoedema.

Symptoms of lipoedema

The main symptom of lipoedema is the development of abnormal body fat. This is most often over your hips and thighs. This usually starts during puberty, but can start during pregnancy or menopause. The fat may feel lumpy, a little like a beanbag. Other symptoms include:

pain and tenderness in the areas where fat develops
painful joints
bruising easily, because there are fragile blood vessels in the fatty tissues

You may find that swelling and pain get worse:

in hot weather
after exercise
when you’ve been standing for a long time
when flying

As lipoedema develops, the amount of abnormal fat laid down increases. Larger lumps of fatty tissue may develop, especially on your thighs and around your knees. In the most advanced disease, the abnormal fat can spread to other areas of your body such as your chest and arms.

Because lipoedema doesn’t spread to your feet or hands, the swelling usually stops sharply at your ankles and wrists. This is a particular sign of lipoedema and is called cuffing or braceleting.

Many people with lipoedema may have tried dieting with little success. The disease can cause you to feel distressed, particularly in its more advanced stages. It may affect your mental health, and can sometimes lead to feelings of depression or anxiety.

Diagnosing lipoedema

Getting a diagnosis isn’t always easy, often because doctors haven’t had training in lipoedema. Only around one in 10 people say they were correctly diagnosed when they first went to the doctor.

Lipoedema can be mistaken for weight gain so women are sometimes advised to diet and exercise more. But this is unlikely to help to reduce the fat build-up caused by lipoedema. However, diet and exercise are important for staying healthy if you have lipoedema and can help to control symptoms.

There are no specific tests for lipoedema. Your doctor will make the diagnosis by examining you and asking about your symptoms. They will look at:

the distribution of body fat you have
whether there is thickening of the fat layer under the skin on your legs or arms
if the swelling is on one side of your body or both

The doctor will want to know about any bruising, tenderness and pain you have in the affected areas. They will also ask whether discomfort and swelling in your legs improves when you put your feet up. If it does, the swelling may be caused by a similar condition called lymphoedema, particularly if it affects only one side of your body. They may also check the blood flow in your affected limbs and ask you about your diet.

Lipoedema may get worse over time. So, your doctor will take a series of measurements when you’re diagnosed. These will be used as a baseline to see how your lipoedema is developing. The measurements usually include:

measuring around all your swollen limbs
your waist measurement
your weight and height, to work out your body mass index (BMI)

Treatment for lipoedema

Unfortunately, there is no cure for lipoedema. But treatment can help to slow it down, stop it getting worse and help you to manage it.

Compression therapy

Compression therapy means using pressure to treat areas of lipoedema. It can help with pain and discomfort by supporting your affected body tissues. It can also help to streamline the shape of affected limbs. It won’t generally help to reduce the size of your limbs because the swelling is due to fat, not fluid.

Compression may help to stop your lipoedema getting worse, even if it can’t reduce the size of your limbs. But if you have advanced lipoedema (called lipo-lymphoedema), there may be fluid collecting as well. If so, compression therapy will help to reduce that.

There are several types of compression therapy including:

elastic sleeves and stockings (compression garments)
bandaging
a treatment called intermittent pneumatic compression

It is very important that compression garments fit well. Sometimes, they need to be specially made for you. You may see ads for lipoedema compression leggings online. But do make sure you get advice before buying or wearing any type of compression garment. A lipoedema specialist should always carry out bandaging and compression garment fitting.

Pneumatic compression uses a machine to inflate a sleeve or stocking with air. It works in waves, starting at the hand or foot and moving up the arm or leg. It’s mainly used to reduce swelling caused by fluid, but can also help to reduce pain in lipoedema.

Manual lymphatic drainage (MLD)

MLD is a specialist type of light massage that is mainly used to reduce swelling caused by fluid. People with lipoedema say that it can help to reduce pain and discomfort. You may have this alongside compression therapy.

Pain control

People with lipoedema may have skin that is painful to touch (hypersensitivity). Many also have joint pain or aching and heavy limbs. Compression therapy may help with hypersensitivity and heaviness.

Exercise can help with joint pain and your doctor may suggest you see a physiotherapist. If your pain is difficult to control, your doctor may refer you to a pain clinic for specialist help.

Liposuction

This is a surgical treatment for lipoedema. Your doctor removes fat using a tube put in through small cuts in your skin. It can help to reduce pain and bruising and improve mobility but it is not a cure. For many patients, the benefits of liposuction are long-lasting. But it’s important to realise that the fatty tissue can build up again and the symptoms return.

You need to have non-surgical treatment for at least six months before considering liposuction. But even then, you may not be able to have it done on the NHS. It depends on where you live.

Your doctor will want to be sure you understand what the surgery can and can’t achieve and may ask you to have some counselling before your operation. It’s important that you have realistic expectations of what the treatment can do for you.

After your surgery, you may need to wear compression garments for 24 hours a day. And you may need to continue wearing them long term. But over time, some women find they can stop wearing compression garments and having manual lymphatic drainage (MLD) without their symptoms returning.

There are some side-effects to surgery. Most women have pain or a burning sensation afterwards. It can take some months for post-operative swelling and pain to go away. So don’t worry that the discomfort is your lipoedema getting worse. As with all types of surgery, there can also be complications such as infection.

Self-help

Looking after yourself can help to reduce your risk of complications. It will also keep you as healthy as possible. General health advice about diet and exercise is the same as for anyone.

Advice on weight management, diet and exercise

People with lipoedema can put on weight in the same way as everyone else. Exercising and eating well may help you to maintain a healthy weight and keep moving. Lipoedema affects your weight and body mass index (BMI). So your lipoedema specialist will use your waist measurement as a more accurate way of monitoring your weight.

Being overweight can strain your joints and is potentially harmful to your general health. Staying at as healthy a weight as possible will reduce your risk of cardiovascular disease and diabetes. It may also help to stop you developing more advanced lipoedema.

Current UK exercise guidelines recommend being active every day. And at least 2 ½ hours of moderate intensity activity weekly. They also recommend some muscle strengthening activity on at least two days a week.

Try to minimise the amount of time you spend sitting down or being inactive. Low impact exercise such as yoga, swimming and walking will help to keep you mobile and avoid putting extra strain on your joints. Women with lipoedema find aqua exercise (exercising in water) particularly helpful.

Skin care

In areas of lipoedema, your skin is at increased risk of irritation or fungal infection. It’s important to keep it clean and dry, particularly in skin folds.

If you have lipo-lymphoedema, any break in your skin from a cut or a graze will increase your risk of a bacterial infection (cellulitis). Signs of cellulitis include redness, heat, swelling, fever and generally feeling unwell.

If you have any of these signs, see your doctor. You may need antibiotics. To reduce your risk of a skin infection:

take great care of your skin – make sure you keep it clean (especially in skin folds) and moisturise daily
wear insect repellent to help prevent you from getting bitten
wear sun protection to reduce your chance of getting sunburn
clean and dry cuts and grazes well, and apply antiseptic ointment

Causes

Doctors don’t know the exact cause of lipoedema. In some cases, there may be a genetic link. Researchers think it’s likely to be a faulty gene that is dominant, so you would only need to inherit it from one parent. They haven’t found a specific gene fault that increases risk yet, but research is ongoing.

Lipoedema nearly always affects women and most often starts during puberty. It also sometimes starts during pregnancy or the menopause. So, hormones may also play a part.

Living with lipoedema

If you have lipoedema, you may have:

problems with your mobility
difficulty standing
varicose veins
pain in your joints

For many women, lipoedema affects daily life, causing problems at work and at home. Low self-esteem and lack of confidence can affect relationships with family and friends.

Often, health professionals haven’t had training in this condition or are unaware of it. This can delay diagnosis.

Having lipoedema can be distressing and you may find it impacts your mental health. It may help to join a support group where you can talk to other people with lipoedema, who know what you’re going through. If you’re struggling, don’t feel embarrassed about talking to your doctor. You may benefit from counselling or cognitive behavioural therapy (CBT).

Women often say that being diagnosed comes as a relief after years of blaming themselves for their condition.

Doctors don’t really know what causes lipoedema. It’s far more common in women than men, and often starts in puberty, menopause or during pregnancy. This suggests there is likely to be a hormonal influence. It also sometimes runs in families.

There’s no specific test for lipoedema. The main sign is fat deposits on both sides of your body. These are out of proportion with the rest of your build, particularly on your buttocks and thighs. The fat can feel lumpy and be painful to touch. See our sections on symptoms and diagnosis above for more information.

Unfortunately, you can’t get rid of lipoedema completely. But there are treatments to help to control it. These include compression, a special type of massage, and liposuction. Keeping active and eating healthily can also help. To find out more, see our sections on treatment and self-care above.

Weight loss surgery won’t help with areas of lipoedema because it’s not caused by over-eating. Liposuction may help to reduce your symptoms but it’s not a cure. You usually have to have tried other treatments for six months before that’s an option. See our section on treatment above for more information.

Eating a healthy diet and getting regular exercise are the best ways to lose weight, whether you have lipoedema or not. Unfortunately, losing weight won’t get rid of the lipoedema. But keeping to a healthy weight will help you to stay active and minimise other problems. It could also stop your lipoedema getting worse.

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Reviewed by Liz Woolf, Freelance Health Editor, May 2021
Expert reviewer, Karen O’Hara, Physiotherapist at Bupa
Next review due May 2024

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