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Lipoedema


Expert reviewer, Natalie Kruger, Physiotherapist
Next review due January 2021

Lipoedema is a lesser-known condition that causes an abnormal and uneven build-up of fatty deposits, most often in the hips and thighs. The fatty tissue is often painful to touch and bruises easily. It nearly always affects women and often seems to run in families, so may have a genetic cause.

Lipoedema most often starts in puberty and so may be affected by hormones. Unfortunately there is no cure, but treatment is available and research is ongoing.

Woman exercising in swimming pool

 

What is lipoedema?

Lipoedema (pronounced lip-oh-dee-mah) is a condition in which abnormal fat deposits build up, most often on the hips, buttocks, thighs and knees. In around one in three cases, it affects the arms as well. It doesn’t usually affect the hands or feet. Lipoedema usually affects both sides equally and the affected area may look out of proportion with the rest of the body.

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

Although sometimes confused with lymphoedema, lipoedema is quite different. Lipoedema is a build-up of fat deposits, while lymphoedema is a build-up of fluid. Lipoedema is also different to normal weight gain; for example, the affected areas can look and feel different (see the Symptoms section below).

Types of lipoedema

Doctors group lipoedema into five types, depending on the part of the body affected. These types are:

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

Some people have more than one type of lipoedema. There are also several stages of lipoedema. In the earliest stage, the skin surface appears normal, but the fat storing area just under the skin surface is enlarged. As the condition develops, the skin becomes uneven and may have a dimpled appearance. In more severe cases of lipoedema, the affected areas may become lumpy and change shape. In its most advanced stage, fluid may collect in the area as well as fat, which is known as lipo-lymphoedema.

Symptoms of lipoedema

The main symptom of lipoedema is the development of abnormal body fat, most often over the 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
  • thickened, less-elastic skin over affected areas

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

Many people with lipoedema may have tried dieting with little success. The disease can cause a lot of distress, particularly in its more advanced stages, and depression and anxiety are common.

Diagnosing lipoedema

Getting a diagnosis of lipoedema is not always easy, which may sometimes be due to doctors not having received training in lipoedema. Only around one in 10 people say that their doctor diagnosed them the first time they described their symptoms. Many are told to diet and exercise more, which may not help to reduce the fat build-up caused by lipoedema. However, for people with lipoedema, like everyone else, diet and exercise are important parts of staying healthy and can help to control symptoms.

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

  • the distribution of body fat that 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 goes down at all if 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. We have more information about lymphoedema that you may find helpful.

Lipoedema is a condition that may progress over time. So, your doctor or health professional will take a series of measurements when you are diagnosed. These will be used as a baseline to see how your lipoedema is developing. The measurements will usually include:

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

Treating lipoedema

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

  • compression therapy
  • manual lymphatic drainage (MLD)
  • pain control
  • skin care
  • advice on managing your weight, diet and exercise
  • psychological support
  • liposuction

Compression therapy

In lipoedema, the aim of compression is to help to reduce pain and discomfort, and streamline the shape of affected limbs. It won’t generally help to reduce the size of your limbs, as the swelling is due to fat, not fluid. If you have advanced lipoedema (called lipolymphoedema), there may be fluid collecting as well, in which case compression therapy will help to reduce that. However, compression may help to stop your lipoedema getting worse, even if it can’t completely reduce the size of your limbs.

There are several types of compression therapy, including elastic sleeves and stockings (compression garments), bandaging and a treatment called intermittent pneumatic compression. It is very important that compression garments fit well and sometimes they need to be specially made for you. Bandaging and compression garment fitting must always be done by a specialist. Pneumatic compression is a machine that inflates a sleeve or stocking with air, starting at the hand or foot and moving up the arm or leg. It is mainly used to reduce swelling caused by fluid, but can also help to reduce pain in lipoedema.

Manual lymphatic drainage (MLD)

MLD is a very specialist type of light massage that is mainly used to reduce swelling caused by fluid. In lipoedema, patients say that it can also 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), joint pain, or aching and heavy limbs. Compression therapy may help with hypersensitivity and heaviness. Exercise may help with joint pain and your doctor may suggest you see a physiotherapist. If managing your pain is proving difficult, your doctor may refer you to a pain clinic for specialist help.

Skin care

If you have lipoedema, skin in affected areas is at increased risk of irritation or fungal infection. It is important to keep the skin clean and dry, particularly the skin folds. In the case of lipo-lymphoedema, cuts and grazes can be slower to heal and any break in the skin will increase your risk of a bacterial infection (cellulitis). If you have signs of cellulitis, you need to see a doctor as you are likely to need antibiotics. Signs include redness, heat and swelling. You may also have a temperature and feel unwell. There is more about looking after your skin in our section on Self-help.

Advice on weight management, diet and exercise

People with lipoedema can put on weight in the same way that anyone else can. Because of this, eating a healthy diet plays an important role in the management of lipoedema. Carrying extra weight can put extra strain on your joints and is potentially harmful to your general health. Keeping to as healthy a weight as you can will reduce your risk of cardiovascular disease and diabetes. It will also make it easier for you to keep active and may help to stop you developing more advanced lipoedema.

Current UK guidelines recommend that adults should be active daily, and each week undertake at least 2.5 hours of moderate intensity activity. They also recommend that adults should undertake physical activity to improve muscle strength at least two days each week. Minimising the amount of time you spend sitting down or being inactive is also recommended.

If you have lipoedema, exercising and eating well may help you to benefit from weight loss/maintenance and improved mobility, as well as combatting negative feelings associated with lipoedema.

Psychological support

Lipoedema can be a distressing condition and depression and anxiety are common. As with other long-term health conditions, looking after yourself, eating healthily and taking exercise can help you to feel positive. Contacting a support group can also help, by putting you in touch with other people with lipoedema, who will know what you’re going through. But if you are struggling, don’t feel embarrassed about talking to your doctor. You may benefit from counselling or cognitive behavioural therapy (CBT).

Liposuction

It may be possible to have liposuction to treat lipoedema. It can help with symptoms, reducing pain and bruising and helping to 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.

Your doctor will want you to have tried conservative treatment for at least six months before you consider liposuction – but even then it may not be funded by the NHS, depending on where you live.

Your doctor will want to make sure that you understand what the surgery can achieve and what it can’t. Straight after your surgery, your surgeon will probably recommend that you wear compression garments for 24 hours a day. You may need to continue wearing them long term. But over time, up to one in three patients can stop wearing compression garments and having manual lymphatic drainage (MLD) without their symptoms returning.

Self-help

Looking after yourself can help to reduce your risk of complications as well as keeping you as healthy as possible. General health advice is the same as for anyone else.

  • Eat a healthy, well-balanced diet and aim to keep to a healthy weight. Lipoedema affects your weight and body mass index, so your lipoedema specialist will use your waist measurement to monitor your weight.
  • Take some form of exercise daily – 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.

If you have lipolymphoedema, you may be more prone to skin infections in affected areas of your body. These tips will help you to reduce your risk.

  • Take great care in looking after your skin, making sure it is kept clean (especially in skin folds) and moisturising daily.
  • Wear insect repellent so you don’t get insect bites.
  • Wear sun protection so you don’t get sunburnt.
  • If you do get a cut or graze, clean and dry it well and apply antiseptic ointment.
  • See a doctor as soon as possible if you see any signs of skin infection – warmth, redness, local swelling and pain.

Causes

The exact cause of lipoedema isn’t known. In some cases, it can run in families so there may be a genetic link. Researchers studying the pattern of lipoedema in families think that it is likely to be a dominant gene, meaning that you only need to inherit the gene fault from one parent. A specific gene fault that increases risk hasn’t yet been found, but research is ongoing.

Lipoedema nearly always affects women. It usually starts during puberty, pregnancy or menopause, so hormones may also play a part.

Living with lipoedema

Having lipoedema can make life very difficult. The physical effects may cause difficulty with mobility, standing and other medical complications, such as varicose veins and joint pain. Some women report that lipoedema affects their daily lives negatively, causing problems at work and at home. Low self-esteem and lack of confidence can affect relationships with family and friends. Often, health professionals have not had training in this condition or are unaware of it, which can result in a delayed diagnosis.

Against this background, women often say that just being diagnosed comes as a relief after years of blaming themselves for their condition. Once you have a diagnosis, you will be able to access treatment and make contact with other people with lipoedema, who can understand how the condition has affected you.

If you suspect that you have lipoedema, support groups have produced information that helps to explain the condition. See our Other helpful websites section below for more information.


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Related information

    • Lipoedema. The Lymphoedema Support Network. lymphoedema.org, last updated April 2017
    • Lipedema. NIH Genetic and Rare Disease Information Centre. rarediseases.info.nih.gov, last updated October 2016
    • Herbst KL, Mirkovskaya L, Bharhagava A, et al. Lipedema fat and signs and symptoms of illness, increasing with advancing stage. Arch Med 2015; 7(4):1–8
    • Herbst KL. Rare adipose disorders (RADs) masquerading as obesity. Acta Pharmacologica Sinica 2012; 33(2):155–72. doi: 10.1038/aps.2011.153
    • Wounds UK. Best practice guidelines: rhe management of lipoedema. Wounds UK, London, 2017
    • Can you recognise lipoedema? Lipoedema UK. www.lipoedema.co.uk, accessed September 2018
    • Reich-Schupke S, Altmeyer P, Stucker M. Thick legs – not always lipedema. J Dtsch Dermatol Ges 2012; 11(3):225–33. doi: 10.1111/ddg.12024
    • Fetzer A, Fetzer S. Lipoedema UK big survey 2014 research report. Lipoedema UK. www.lipoedema.co.uk, published 2016
    • Forner-Cordero I, Szolnoky G, Forner-Cordero A, et al. Lipedema: an overview of its clinical manifestations, diagnosis and treatment of the disproportional fatty deposition syndrome – systematic review. Clin Obes 2012; 2(3–4):86–95. doi: 10.1111/j.1758-8111.2012.00045.x
    • Halk AB, Damstra RJ. First Dutch guidelines on lipedema using the international classification of functioning, disability and health. Phlebol 2017; 32(3):152–59. doi:10.1177/0268355516639421
    • FAQs about lipedema. Lymphatic Education and Research Network. www.lymphaticnetwork.org, accessed September 2018
    • Comerota AJ, Aziz F. The case for intermittent pneumatic compression. J Lymphoedema, 2009; 4(2):57–64
    • Baumgartner A, Hueppe M, Schmeller W. Long-term benefit of liposuction in patients with lipoedema: a follow-up study after an average of 4 and 8 years. Br J Dermatol 2016; 174(5):1061–67. doi: 10.1111/bjd.14289
    • Dadras M, Mallinger PJ, Corterier CC, et al. Liposuction in the treatment of lipedema: a longitudinal study. Arch Plast Surg 2017; 44(4):324–31. doi: 10.5999/aps.2017.44.4.324
    • Skin care for lymphoedema. Macmillan Cancer Support. www.macmillan.org.uk, last updated July 2016
    • Physical activity guidelines for adults. Department of Health. gov.uk, published July 2011

  • Reviewed by Graham Pembrey, Lead Editor, Bupa UK Health Content Team, January 2019
    Expert reviewer, Natalie Kruger, Physiotherapist
    Next review due January 2021



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