Lipoedema 

Introduction 

A ring of fatty tissue overlaps the top of the feet

Lymphoedema vs 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 a protein-rich fluid called lymph within the skin tissues. This is the result of a problem with the lymphatic system, the network of vessels that drains excess fluid from body tissue.

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

A person with lipoedema may eventually develop lymphoedema as well if fat gets in the way of lymphatic drainage. This combination of the two conditions is known as lipo-lymphoedema.

Lipoedema is the abnormal build-up of fat cells in the legs, thighs and buttocks.

This page aims to address the commonly asked questions about lipoedema for anyone who has just been diagnosed with the condition.

What are the features of lipoedema?

In lipoedema, the legs become symmetrically enlarged from the ankles right up to the hips, but the feet and hands are unaffected. The build-up of fat often creates a ring of fatty tissue overlapping the top of the feet, as if there were tight bands around the ankles.

Because of the increased fat under the skin, the legs can appear pale and feel cold when compared with the rest of the body. The skin feels fatty or doughy, and is often tender and bruises easily.

The feet and hands are not affected, although the arms can be occasionally.

Lipoedema can be very painful women with the condition often complain of aching in the affected limbs and pain in the knees.

Women may also experience fluid retention, and in about 60% of cases small varicose veins are seen under the skin surface.

Who is affected?

Lipoedema occurs almost exclusively in women. It tends to start at puberty or at times of hormonal change, such as pregnancy, and progresses gradually.

The accumulation of fat tends to be worse in people who are obese, but also affects people who are a normal weight. It should not be mistaken for obesity, as dieting does not make any difference to the condition (see Treatment section below).

What causes lipoedema?

The cause of lipoedema is not known, but there is a family history of the condition in up to 50% of cases.

The fact that it starts in puberty or pregnancy suggests that hormones have an influence.

In rare cases of lipoedema in men, the men have usually been taking hormone therapy or have cirrhosis of the liver.

How is it diagnosed?

There are no specific scans or investigations for lipoedema it is diagnosed by appearance alone.

Unlike lymphoedema, in lipoedema the skin does not pit when you press it and compression garments do not reduce the swelling.

How is it treated?

The only treatment that appears to be effective for lipoedema is a procedure called tumescent liposuction, although this is not usually available on the NHS.

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

It has been reported to be a highly effective treatment with good long-term results.

Read more about liposuction and having an operation.

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, but weight gain does tend to affect lipoedema sites more (particularly the thighs and hips)

Page last reviewed: 01/08/2012

Next review due: 01/08/2014

Ratings

How helpful is this page?

Average rating

Based on 46 ratings

All ratings

Add your rating

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

Report this content as offensive or unsuitable

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

Report this content as offensive or unsuitable

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

Report this content as offensive or unsuitable

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.

Report this content as offensive or unsuitable

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.

Report this content as offensive or unsuitable

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

Report this content as offensive or unsuitable

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

Report this content as offensive or unsuitable

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!

Report this content as offensive or unsuitable

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.

Report this content as offensive or unsuitable

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!!

Report this content as offensive or unsuitable

Debzzzz said on 18 October 2012

Finally the condition is recognised ty :D

Report this content as offensive or unsuitable

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

Report this content as offensive or unsuitable

Having an operation

If your GP has suggested you may need surgery, this guide is for you