Lipoedema 

Introduction 

Lipoedema often involves a build-up of fat cells in the legs 

Lymphoedema or lipoedema?

These two conditions can look very similar, but there are important differences.

Lymphoedema is swelling under the skin caused by a build-up of fluid in the lymphatic system – the network of vessels that drains excess fluid from body tissue.

Swollen skin caused by lymphoedema will pit or indent if you press it, but this does not happen in cases of lipoedema.

A person with lipoedema may eventually develop lymphoedema as well, if the build-up of fat affects lymphatic drainage. This combination of the two conditions is known as lipo-lymphoedema.

Lipoedema is a long-term (chronic) condition typically involving an abnormal build-up of fat cells in the legs, thighs and buttocks.

The condition occurs almost exclusively in women, although there have been rare cases reported in men.

Signs and symptoms

In lipoedema, the legs become enlarged from the ankles up to the hips. Both legs are enlarged at the same time and to the same extent.

The feet are not affected and this creates a ‘bracelet’ effect or ‘band-like’ appearance just above the ankles.

The hands are not usually affected either, although the arms occasionally can be.

The degree of enlargement caused by lipoedema differs between individuals with the condition and it can gradually worsen over time.

As well as becoming enlarged, affected areas of the body may:

  • feel soft, 'doughy' and cold
  • be tender to touch
  • bruise easily
  • ache or feel painful
  • have small broken veins under the skin

The condition can progress to cause fluid retention (lymphoedema) in the affected legs.

The combination of these symptoms can lead to reduced mobility and psychological issues, such as low self-esteem.

What causes lipoedema?

The cause of lipoedema is not known, but there is a family history of the condition in some cases and it seems likely that the genes you inherit from your parents play a role.

Lipoedema tends to start at puberty or at times of hormonal change, such as pregnancy or the menopause, which suggests hormones may also have an influence.

Although the accumulation of fat tends to be worse in people who are obese, the condition is not caused by obesity and can affect people who are a normal weight. It should not be mistaken for obesity, as dieting often makes little difference to the condition (see below).

Seeking medical advice

You should see your GP if you have symptoms of lipoedema so they can try to identify the cause.

This will usually involve examining the affected areas of your body to help determine whether you have lipoedema or lymphoedema.

Lymphoedema has similar symptoms to lipoedema, and can sometimes develop as a result of lipoedema, but it is caused by a build-up of fluid from the lymphatic system (a network of channels and glands distributed throughout the body) rather than a build-up of fat cells.

The skin of someone with lymphoedema will pit or indent when you press it, but this will not happen with lipoedema.

Treating lipoedema

As there has been little research into lipoedema, there is some uncertainty about the best way to treat the condition.

Generally, the main treatment options are non-surgical treatments and liposuction.

Non-surgical treatments

Non-surgical treatments can sometimes be helpful in improving pain and tenderness, preventing or reducing lymphoedema and improving the shape of affected limbs – although they often have little effect on the fatty tissue.

Several different treatments are designed to improve the flow and drainage of fluid in your tissues, such as:

  • compression therapy – bandages or garments that squeeze the affected limbs
  • exercise – usually low-impact exercises, such as swimming
  • massage – techniques that help encourage the flow of fluid through your body

These treatments are similar to the treatments for lymphoedema.

Liposuction

The only treatment that appears to be effective in reducing the build-up of fatty tissue associated with lipoedema is a procedure called tumescent liposuction.

Tumescent liposuction involves injecting a liquid solution into the legs to help numb the area and reduce blood loss, before the unwanted fat is sucked out through a tube.

This procedure can be an effective treatment with good results, but several separate operations may be necessary to remove the fat from the different parts of your body.

Also, non-surgical treatments may still be needed for a long period afterwards. For example, compression garments need to be worn after surgery to prevent complications such as lymphoedema.

Liposuction is not generally available on the NHS, although it may be possible to apply for funding for cases of lipoedema.

Treatments that don't work

Treatments used for some types of tissue swelling are generally unhelpful for lipoedema.

Lipoedema does not respond to:

  • raising the legs
  • diuretics (tablets to get rid of excess fluid)
  • dieting – this tends to result in a loss of fat from areas not affected by the lipoedema, with little effect on the affected areas



Page last reviewed: 11/08/2014

Next review due: 11/08/2016

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Comments

The 12 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Susan09 said on 14 July 2014

Hi everyone iam on here in the hope to find someone that can help, my mother has lipodema properly stage 3...her GP is no help what so ever.i don't know where to start she has been on heavy pain relief for around 10year and knew she had became addicted to them,and they were no longer covering the pain...she approached her GP and she gave her dif rent medication,after trying really hard and going through all the withdrawals from the tablets and giving them a chance they never covers the pain much so went vac to GP she just said to my mother all you can do is go on the medication you were on already,what a joke to the GPs job and the my mother for asking for help and getting nowhere once again......they have never gave my mum any help accept tablet to help pain that's it....,I feel sick everyday that I need to watch the bright light of life in my mum fade as this horrible ilness takes over her life....,she's still works full times ,although gos straight to bed when comes home and is now even a struggle to get her out at weekend,through the pain and sheer depression this t ilness does to her...,,I did go out my way to contact a lymph clinic and she is about to start with getting her legs bandaged for 2weeks at a time...,iam sorry for going on

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CruelNauture said on 22 February 2014

Hi there
I have had lipoedema for years but got no help after I was diagnosed.
No advise, no help.
Did research+++
Made up a 8 page hand out and gave it to so many.
??? due to Lipoedema I have multi medical conditions.
Have a good GP service.
I had an accident in my wet room and end up in St Thomas Hospital for 44 days.
At first it took 5 to turn me.
Treated very well but had to educate all about my condition
Bed pans too small and frail!
No chair r wide enough for me [ I need 33 inches across] so they had to hire one,
I lost 81kls but the weight is back again.
I pass urine+++. One 24 hour is hospital 5000mls.
Having great pr0blems getting help for my bladder problem. Think I shall have to go private which is very expensive.
My thighs used to be 72 but now down to 69 inches but more pads of fat on the inside of the legs
Check Lipoedema UK.
It appears Holland is doing some research.
Some research and training in Scotland. America is also active. and Australia.
I have never worn any compression articles as nobody in the past told me about them! Also my legs were too sore to the touch.
Now have problems with getting comfortable in bed due to the large amount of fat on my buttocks..
Just to mix things up I have got an attack of cellulitis.
I have found Chinese Touch Tuina Massage Therapy and Reflexology, cupping, herbal feet and leg soaks and auricular accpunture a great help.
As I am sensitive to most creams I have shea butter for my dry skin.
Started on some magnetic treatments and it is helping.
Good luck and the best for the future

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kiroli said on 12 February 2014

I am a 33 year old female whos had large legs since puberty. My bottom half I wear size 16/18 and my top half I wear a 12. I have tried every diet going and no matter how much weight I lose my legs stay the same. I have never owned a pair of boots as they dont fit, even plus size. As a teenager I went skiing and they had no boots that would fit and I was teased and called tree trunk legs.My legs are sore feel heavy and bruise easily. I was in hospital for an operation and the surgeon demanded I took the surgical stockings off and asked if I always had water retention to which I replied thats just my legs....he recomended I see my GP which left me in tears, he told me it was my genetic make up and I would never be Kate Moss. He never even locked at my legs. I think I may have lipoedema but dont think my doctor will take me seriously. Any help would be gratefully appreciated

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Duncs_ said on 20 June 2013

I'm not female, but at last I've got it correctly diagnosed!!

It's only taken me 10 years to get there. I've had recurrent Cellulitis, that turned to lymphoedema. My GP said, "Deal with it. You've got it and nothing can be done." Now of course, I've been re-diagnosed by a dermatology specialist who believes I've had lipoedema, which predisposes me to Cullitis, which predisposes me to lymphoedema!

I'm wearing compression stockings, which is helping, but at last I know what it is. However, I'd like to see someone else about potential avenues to go down, to help further. The dermatologist has suggested a vascular surgeon. Has anyone tried this and if so, what success did you have?

Perhaps now I can see about treating it better.

Well done my specialist and here's hoping more GPs understand that it exists, and help patients.

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Davidpatrick said on 20 October 2012

Absolutely ecstatic that the NHS have recognised Lipoedema. I suffer from this awfully painful debilitating disease myself and it has took me to the age of 51 to get a diagnosis and the worry if my children or grandchildren is concerning for me with the physical and mental trauma i have been through. I hope and pray now that all GPs do take this on board and send ladies like myself for the treatment to help us all have a chance at some quality in our life rather than telling lose weight and do more exercise.

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suzanneevans said on 20 October 2012

Delighted lipoedema is recognised on this site at last as so many women struggle to get this condition diagnosed and treated. You can find more information at www.lipoedema.co.uk

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LipoedemaUK said on 20 October 2012

If you have or think you might have lipoedema we're here to offer help and advice. www.lipoedema.co.uk

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zaman66 said on 19 October 2012

It's great to see that lipoedema is finally on the NHS radar, hopefully it will enable more doctors to be aware of the condition.

What I would say however is that whilst liposuction may be the route that some sufferers go down, for the vast majority of lipoedema sufferers they will not go down the liposuction route. There needs to be more information available for doctors on the ongoing management of the condition: compression garments, careful management of diet (where the emphasis is on good nutrition and trying to avoid further weight gain), manual lymphatic drainage etc.

What is often not mentioned is that if liposuction is used then compression garments will need to be worn for the rest of their life. It is in no way a 'cure'.

It's a step forward though, and a welcome one!

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Scotvic said on 18 October 2012

Very happy that this condition is finely recognised! As a sufferer, I'd say it is worth mentioning also that lipoedema in the legs can also be agonisingly painful just to the touch. Also that although lipoedema cannot be treated in the sense of cured by this, wearing correctly fitted compression garments can help in managing the condition, making the wearer's legs feel less heavy and achy, and preventing the build up of lymphoedema on top of the lipo.

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lippylady said on 18 October 2012

finally recognition of such a painful condition to live with, that has so many effects on a persons life that you can't begin to describe. Now all we need is for GP's to actually recognise the condition and refer on for treatment rather than just telling the patients (including myself) that we need to lose weight and are obese!!

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Debzzzz said on 18 October 2012

Finally the condition is recognised ty :D

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lippylady said on 17 October 2012

about time the nhs recognised this condition and hopefully many of the ladies suffering will now be able to receive the necessary treatment to make life more comfortable, all we need is for GP's to be aware of the condition, diagnosing and referring on for the treatment

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