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According to Lipoedema UK, there could be as much as 11% of the female population with lipoedema. In 2014, there was a Lipoedema UK Big Survey that showed how 78% of women first developed symptoms between 18 and 25 years of age. However, only 7% of these women were given a diagnosis at the time.
A Quality of Life survey of those living with lipoedema was conducted in 2021. Of those surveyed, 91% had mobility problems, 96% experienced fatigue, and almost all experienced pain, swelling and discomfort.
In this article, we’ll introduce you to lipoedema, what it is and how it can be treated.
What is lipoedema?
Lipoedema is a long-term chronic condition that mainly affects women. It presents as an abnormal and symmetrical build-up of fat and fatty connective tissue on the legs and buttocks. It can affect the upper limbs too. The trunk, feet and hands aren’t affected and remain a typical size.
This condition usually makes itself known around the onset of puberty but it also occurs whenever there are other hormonal changes like during pregnancy or the menopause. Often, there is a pattern in families, though the genetic link is unclear.
Lipoedema runs in families but it can skip a generation. It can be passed down to some female relatives but not others. The male line can also pass down the condition.
It was during the 1940s when lipoedema was recognised as a condition. However, there has been little in the way of research and it is rarely mentioned in medical schools. This means that not all health professionals know about it. This has meant that some people are misdiagnosed with lymphoedema or obesity.
When a diagnosis isn’t made, suffers aren’t able to access the right advice and treatment. As a result, they’re more susceptible to secondary health problems like varicose veins, osteoarthritis, eating disorders and lymphoedema.
What is the difference between lymphedema and lipoedema?
Both of these are physical conditions affecting the legs. They involve debilitating swelling and there is no cure. There is often a mix up or confusion between the two. Let’s see how they’re different.
This refers to arm or leg swelling that is caused by lymph node damage or removal. This is usually following treatment for cancer.
The lymphatic system is a part of the body’s immune system and it drains away fluid. When there is a blockage (or a lymph node is removed), fluid can’t drain away, which leads to swelling. Lymphedema swelling can be very mild or extreme. In the worst cases, it becomes difficult to use the limb.
Lymphedema can either be primary or secondary. Primary lymphedema occurs of its own accord while secondary lymphedema is caused by another condition or disease. The latter is much more common. When it is a result of cancer treatment, it might not occur for months after the treatment – or even years.
Lymphedema has no cure currently but with early diagnosis and the right treatment, it can be managed.
As mentioned above, lipoedema affects limbs bilaterally. It is not caused by cancer treatment or a blockage in the lymph nodes and little is known about it as a condition. It is an accumulation of fatty tissue under the skin whose cause is linked to hormonal changes and genetics.
With lipoedema, people usually have much larger legs on both sides. The legs, buttocks and hips are often much larger than the rest of the body and are not in proportion. The hands and feet are rarely affected.
The tissues are often painful and loose and will bruise spontaneously. As there is so much fat, the skin often appears pale and cold in comparison to other areas of the body.
The differences between lymphedema and lipoedema
Here is a comparison of the two conditions:
|Lower limb swelling that is symmetrical||Swelling is not bilateral – there may be one leg larger than the other|
|Disproportionate body shape|
|The swelling feels soft and loose||The swelling feels hard and is caused by fluid retention|
|Feet/hands aren’t affected||Feet are affected often|
|Affects females and very rarely males||Can affect both males and females|
|No greater risk of infection||Increased risk of infection like cellulitis where the swelling occurs|
|The skin is supple and soft||The skin is thickened. It may have papillomatosis or warty change|
|Limbs bruise easily and spontaneously||Limbs don’t easily bruise|
|There is often a family history||In 20% of cases, there is a family history|
|Pain in the joints (particularly the knees)||No pain in joints|
|Pressure on the skin won’t leave an indent||Pressure on the skin will leave an indent – especially early on|
|Pain is felt in the skin||There is no pain but a feeling of tightness is present|
The confusion between the two conditions usually occurs when the disease is in its later stages. This is because the accumulated fat in lipoedema obstructs the drainage of the lymph nodes. As a result, people with lipoedema often end up developing lymphedema too. This is often referred to as lipo-lymphoedema.
What causes lipoedema?
The underlying cause of lipoedema isn’t clear. It isn’t a condition caused by someone being overweight. It is possible to be a healthy weight and still develop the condition.
It is believed to be caused by hormonal changes.
- During puberty.
- During pregnancy.
- When a woman goes through menopause.
- When a woman takes a contraceptive pill.
There is also a genetic link too.
What are the signs and symptoms of lipoedema?
When someone has lipoedema, their legs, buttocks, hips, and sometimes their upper arms will be out of proportion when compared to the rest of their body. Lots of women say their legs look and feel tree-trunk-like as they’re big, heavy and swollen.
Unlike weight gain that’s caused by a lack of exercise or overeating, the fat that accumulates in lipoedema is often tender and painful when it’s touched. The skin also bruises easily and spontaneously.
Lipoedema will look and feel different from other body fat. It also looks different to other swelling like lymphedema.
With lipoedema, the fat is dimpled and feels soft. It has an appearance of cellulite.
Other symptoms and co-existing problems associated with lipoedema
There are other symptoms and problems when lipoedema is established.
This is common when people have lipoedema. Compression tights can help to prevent their formation.
Knee and joint pain is common with lipoedema and some people are also diagnosed with osteoarthritis.
Though having lipoedema isn’t the same as being obese – you can have the condition and not be obese – many women end up with a distorted BMI (Body Mass Index) due to the swelling and accumulated fat in their limbs.
Many women who have lipoedema are accused of overeating but often they are trying to diet to control their limb size. Eating disorders have been linked to the condition as women try to reduce the size of their limbs through over-exercising and under-eating.
The psychological impact of having lipoedema is important to recognise. The condition can be misdiagnosed as obesity, which is upsetting to those who are otherwise healthy and don’t over-eat.
It can also be hard to find shoes and clothes that fit, which makes social situations difficult.
Can lipoedema be prevented?
Though lipoedema itself can’t be prevented, if it is diagnosed early, there are things you can do to halt its progression.
Getting an early diagnosis isn’t easy and many people struggle to get one until their symptoms have worsened.
After diagnosis, there are all sorts of treatments available, including physical therapy and psychological therapy.
Living with lipoedema
Finding out you have lipoedema can come with mixed feelings. For some, it is a relief to know that you can explain your symptoms with a named condition. However, it is also difficult for many to adjust and accept their diagnosis and what it means for them.
Most importantly, with a diagnosis of lipoedema, people have the knowledge to manage their condition in the best way possible.
There are many things you can do to live well with the condition.
Any movement has benefits for lipoedema. It strengthens muscles, keeps the joints moving, helps with lymphatic drainage, boosts confidence, improves mental health, and helps weight management.
Over time, exercise improves stamina, strength, posture and walking gait. Feeling physically stronger helps you feel mentally stronger too.
Choosing a physical activity that you enjoy and that fits into your lifestyle is important. This could be an exercise class, housework, walking or gardening.
Swimming is also a great activity to keep you active as it takes the strain off any joints.
Lipoedema can be hard psychologically and it’s important that people seek help with their emotional needs and mental health. Connecting with other sufferers is also a way to feel less alone with the condition.
How is lipoedema diagnosed?
Getting a diagnosis as early as possible is important and is the first step to managing the condition and halting its progress. Lots of people find it difficult and embarrassing to talk to their doctor initially. However, as this is a progressive condition, you can make a real difference to your future by getting help earlier.
Here are some of the things that doctors consider before making a diagnosis:
- Legs, hips and buttocks are disproportionately larger than the trunk and upper body.
- The enlargement is symmetrical.
- There is a deposition of fat around the knees, buttons and ankles.
- The feet are normal size and so the ankle looks like a bracelet.
- The affected areas will be cold and soft to touch.
- When pressure is put onto the skin and affected areas, there is usually hypersensitivity, tenderness or pain.
- The connective tissue around the joints in the knee is often floppy and loose.
- Bruising happens easily or spontaneously.
- Swelling often worsens when the outside temperature is hotter.
How is lipoedema treated?
Though there is no cure for lipoedema, there are treatments that can stall the progress of the condition and prevent it from getting worse. This is why an early diagnosis is important.
Here are some of the treatments offered to people diagnosed with the condition:
- Compression therapy.
- Weight management support.
- Psychological support.
- Surgery (in certain cases), e.g., liposuction.
Compression therapy for lipoedema
This is a key part of treating lipoedema. The treatment means that a patient will wear special compression garments specifically designed for their shape and size. The purpose of compression therapy is different to those who use it for lymphedema as there is no fluid build-up to deal with. In lipoedema, the compression therapy helps:
- Improve the symptoms – particularly the discomfort and pain.
- Support limb tissue.
- Improve mobility (due to protecting against chafing).
Compression therapy has anti-inflammatory effects. It reduces oxidative stress and improves circulation. As a result, it reduces the pain that’s caused by a lack of oxygen in the fatty tissue.
When compression therapy is combined with physical activity, it works more effectively. This is because exercise also has anti-inflammatory effects too. Exercise in water like water aerobics or swimming can really help to improve symptoms.
Weight management for lipoedema
Though lipoedema is not caused by overweight or obesity, managing and maintaining a healthy weight is important.
In obesity, the body responds well to exercise and dieting. Weight loss (fat loss) will occur from all parts of the body. However, with lipoedema, this isn’t the case. When a patient with lipoedema diets, they will lose fat from the areas not affected by the condition. What weight loss does for these patients is emphasise the difference and disproportion between the lower and upper body. This is because lipoedema fat deposits don’t respond to vigorous exercise or dietary measures.
It’s been shown that the fat cells in lipoedema have characteristics that aren’t in normal fat cells. With this condition, the blood capillaries that supply the cells with blood are fragile. They can become damaged easily, causing bruising. This doesn’t happen in obesity.
When it comes to lipoedema, weight management support is used to improve well-being. Extreme or fad diets should be avoided as this can worsen the condition due to yo-yo-ing. Instead, patients should ensure they follow a well-balanced diet that’s nutritious.
Final thoughts on lipoedema
Though lipoedema can be managed and its progression halted, it is often not diagnosed until it has become a big problem. Anyone that suspects lipoedema should seek an early diagnosis where possible as they have a much greater chance of the condition being more manageable throughout their lives.