To think I might have lipedema? Anyone know anything about it?

[GentleGiantOctopus]

I’ve read around 10% women have lipedema, many of whom go undiagnosed.

Ever since puberty, I’ve always had very flabby upper thighs and large buttocks compared with the rest of my body. I’m skinny on the top half of my body, but my bottom half is really wobbly. My muscles aren’t strong but if I bulked them up, the fat would still be there - I know this because I have been a stone underweight in the past when I compulsively exercised and ate barely anything (unfortunately I was anorexic as a teen, but thankfully have been well for around 20 years now). Even then, I could grab a whole handfuls of it, which is part of what kept me in the grip of anorexia until I realised it was too miserable living life like that and started

My thighs currently look very similar to the attached image (insta pic of a young woman who has lipedema). I also have an awful lot of cellulite - the kind that practically throws shadows in places!

Exercise-wise now, I walk a lot, but don’t run (bad knees) or go to the gym. In the week I don’t tend to walk over 8,000 steps a day, but on weekends it can easily be above 20,000 each day. I walk swiftly every day so as to get my heart rate up and always run up the stairs at home.

My ankle on one side has a swelling that my GP previously said was a lipoma, but now I’m wondering if this is part of a bigger issue. I also have optic nerve drusen (fat deposits on the optic nerve) and a cholesterol that is on the higher side of normal, despite a healthy diet.

My BMI is around 19.5 (so I am still on the slim side) and my upper half looks skinny which I don’t like, but I never gain weight there. I also have slight bat wings under my arms.

I had liposuction around age 20 to remove my saddlebags on my outer thighs (plus a revision surgery). They are still there a bit, but considerably less noticeable than they were. They were very prominent prior to surgery and looked rather odd compared with my bony top half - they looked very like this: www.instagram.com/p/CEHrDM2gt1N/

As I get older, I have stopped wearing normal socks as I get a huge sock line at the ankle that lasts for hours. I wear trainer socks now. My legs get slightly bigger by the end of the day, but probably only I would notice. When it’s really hot or I have eaten something really salty, they swell as well (especially with the latter).

My query is, could it be lipedema if I have no pain? The ‘lipoma’ on my leg aches a bit sometimes, but nothing major. The rest of the flab is not painful.

Or am I just ‘skinny fat’? I am conscious that if it is lipedema there are things I need to be doing to prevent its progression. Problem is, I have a feeling it would be very hard to get a diagnosis because right now I don’t look particularly out of proportion - a passer-by might only look twice if they saw me in a swimming costume (which will be NEVER, haha) and I have read that most GPs don’t know much about to the condition.

Thanks and sorry for the long post.

Nobody? Guessing it is a bit specific! Maybe should have posted in health.

@Singlenotsingle

Lipodaema is gross, but it's not what you've got. It's where someone is morbidly obese and the fat grows in a big lump, usually on the leg. It looks like the girl in the picture just has a predisposition to fat legs. Take a look at a tv show on Red Quest, on every evening at 8.00 pm. You'll see more lipodemas than you can shake a stick at

You’re very wrong and quite offensive. Lipodema is just an abnormal build up of fat distributed across the legs. I have a very skinny friend who has it. It’s certainly not ‘gross’. She gets it drained on occasion but it always comes back.

Lipedema*

This is interesting! I've wondered whether I have this as my legs are very 'fatty' compared to the rest of my body and always have been, however I have put it down to a combination of things which I wonder ring true for you...

• I have a 'heavy heel' type stride, ie the kind of walk running and walking gait which uses more skeletal impact than muscle (if that makes sense!) so next to no calf muscle, zero glutes (the muscle that would 'lift' the saddle bag thighs!) and minimal quads... I have always had very little definition in my legs and find it hard to build muscle.
• partly as a consequence of this I've also done through the eating disorders/low cal diet which I think screwed/screws up your metabolism leading your body to store even more fat
• after many years I think I have quite a few intolerances to various foods which having been ignored (as they caused no real issue/discomfort) have caused toxin build up ie cellulite, eg Im know pretty sure I'm crap on sugar wheat dairy and caffeine but these have featured heavily in my diet at various stages!

Do any of these sounds similar? And Have you ever tried a detox, op?

Hello,

I have lipoedema and I am not gross nor mobidly obese!!
I weigh about 9 stone and have for most of my adult life.

Anyway - its hard for me to tell from your description. Some Lymphodema nurses can also help with diagnosing Lipoedema but also a lot of GP's have not heard of it so you can get some false information.

Conservative treatments include compression, whole food anti-inflammatory diet and pumping legs with a compression pump. The only treatment is liposuction which isn't available on the NHS.

I went to Germany for my surgery as they have the best lipoedema surgeons in the world. Total cost for one surgery was £7K.
For surgery with a specialist lipoedema surgeon you will need an official diagnosis. I paid privately to see Anne Dancey and she diagnosed me. I went to see her because if anyone would be able to tell me if I had it - it would be her because of her experience. Personally, I felt a lot of relief when I was diagnosed.

We have about five specialist surgeons in Britain. They are Dr Muddoch (Scotland), Dr Karri (Hull) Mrs Anne Dancey (West Midlands) and Dr Gupta (London)..there are some at St Thomas Hospital in London but I forget their names.

The best lipoedema facebook group is Global Lipoedema Awareness - Surgeries/Doctors. It is aimed at people who are going for surgery but it has a lot of different 'legs' that you can look at and see if you can spot your leg twin!

There is a type where it is localised in the saddle bag area but the classic type is normal feet, no ankles, fat knees, column like legs.

All the best

Oh and I have never had any pain with my legs. Just seen your question about that.

Lipedema fat is painful. Your skin should feel cold and as it advances you can feel a sensation like little beanbag balls or lentils under the skin. It’s not a condition of obesity, people with lipedma can have very slim top halves and much larger bottom halves.

The only decent treatment is liposuction but you can get some relief with MLD massage and compression garments.

@Singlenotsingle

Lipodaema is gross, but it's not what you've got. It's where someone is morbidly obese and the fat grows in a big lump, usually on the leg. It looks like the girl in the picture just has a predisposition to fat legs. Take a look at a tv show on Red Quest, on every evening at 8.00 pm. You'll see more lipodemas than you can shake a stick at

Absolutely foul response and not true at all.

@Singlenotsingle

Lipodaema is gross, but it's not what you've got. It's where someone is morbidly obese and the fat grows in a big lump, usually on the leg. It looks like the girl in the picture just has a predisposition to fat legs. Take a look at a tv show on Red Quest, on every evening at 8.00 pm. You'll see more lipodemas than you can shake a stick at

...says someone whose only knowledge is from a TV show

I’m a bit like you OP, body wise. Skinny fat, pear shaped etc. Not sure that what you describe is lipodema, isn’t a criteria that the fat is painful or heavy? And surely it’s normal to get some water retention or swelling in the legs? I don’t have this myself but I do get a slight mark from socks. I understand your concern as I think it’s hard to diagnose but once diagnosed is treatable.

Lipodema fat kind of pools in little pockets and feels very different to regular fat. It'll feel cold and spongy to the touch. You'll have some dimpling like cellulite but whereas cellulite tends to feel like orange peel, with lipodema it's more like marshmallow.

My ex-sister in law waited a long time to see a doctor who would actually diagnose her lipodema.

Hope that helps a bit.

Doctors. Doctors know about lipoedema. Not randoms on the internet.

Actually bridge doctors don't know about lipodema. It's very difficult to get any of them to listen or indeed look into it.

lipedemaproject.org/do-you-have-lipedema-quiz/

Lots of info on the site above.
Lipedema is not the same as obesity the fat is different and dieting will not reduce it. Women of all weights can have it you can be slim and have it or have obesity along side it. If you are obese diet will help with the regular fat but not the Lipedema fat, although some find the keto way of eating helps with the pain and inflammation that it cause. It is thought to be linked to hormones which is why it predominantly affects females. And doctors in the UK know very little about it.
There are some good groups on Facebook with advice on how to slow its progression.

Please go and see a GP or a specialist. Please don’t get your info from people on the internet or, even worse, Red Quest like the ill informed and offensive @Singlenotsingle seems to 🙄

Thank you yesmate. So sweet.

Thank you all for the useful replies and sorry I didn’t reply before now.

Foobydoo, I did that test (answering as conservatively as possibly) and scored 58%. Anywhere between 30-69% is listed as a possibility of lipedema (with 69% and up being highly likely)

Kurt, the fat feels relatively normal to me but ‘loose’ if that makes sense. Just like in the picture I posted. The only place it does feel a bit like peas/lentils is my inner thighs and I thought that was normal, maybe due to glands underneath?

It may or may not be relevant, but I am likely hyper mobile and my skin is extremely soft and velvety to the touch - my outer thighs look like porridge. I don’t think my cellulite is normal for my weight - by age 17 it was very pronounced and has slightly worsened over the years (but not much because I control my eating to avoid weight gain). I remember the articles showing Mishca Barton’s cellulite in 2008 and being grateful seeing a celeb with thighs similar to mine, but was gutted that the press was so horrible about it - suggesting her smoking was to blame - leading her to claim the image was doctored (could have been).

So lipedema does look like a possibility. Working myself up to seeing a GP about it.

I've just come across this - sorry it's a few days old now. Chances are you probably do have lipoedema I'm afraid. Your description of porridge thighs and being hyper mobile clinched it for me most GPs have no clue about it hence its woefully underdiagnosed. Surgery is the only real treatment but its nigh on impossible to get NHS funding, I have stage 3 disease and I'm on my second go. Feel free to ask me anything you need to know ahead of going to see your Dr. There is one NHS specialist in the UK, he is Mr Munnoch in Dundee. I live in Yorkshire and travelled up to see him last week after a 2 year wait. I've also seen Mr Karri privately. Good luck with it, its a vile disease and I wouldn't wish it on anyone x

Has anyone seen Dr Wolf on Harley St? I was looking into the German clinics but I think that’s off the table for some time. I did see Kristina Gordon who diagnosed me and then sent me to Catherine Milroy to discuss liposuction. She was very discouraging, saying I would need daily compression garments for life plus it would cost £20k per full leg ie £40 for my lower half!

Thanks so much @TheSnootiestFox. My turn to apologise for a late reply!

I have done some more self-examination by pinching the skin and am pretty convinced this is lipedema fat on my thighs. What do you reckon? I can see very obvious nodules! (By comparison my stomach fat is completely smooth when pinched).

Maybe it is normal cellulite, though.

I am also considering approaching Kristina Gordon for a diagnosis.

@ghislaine 40k!!! How very depressing.

I’ve been reading about manual lipedema nodule extraction. Oh my god, for those who enjoy Dr Pimple Popper’s videos, this is on another level! I can totally see why standard liposuction only partially helps, since all the modules can’t go up the cannula and just get left behind.

*nodules!

That is really interesting, @GentleGiantOctopus. I was intending to ask how liposuction deals with fibrotic fat as I had exactly that thought about the cannula. I went straight to the videos - amazing how much extra fat was extracted that way. Made me feel very hopeful. I wonder if/when this technique will make it across the Atlantic.

I think Catherine Milroy is an outlier. I definitely think she was trying to discourage me and/or was talking from a lymphodema standpoint. If the fat is removed, then the lymph system can surely function normally and there would be no need for compression.

@GentleGiantOctopus - I'm afraid to say that those nodules look all too familiar. If you're happy to post a pic of your legs I can give you an indication as to what stage I think you are- I'm no Dr but I'm rarely wrong now I would post my stage 3 beauties but as they've been all over the press theyre instantly recognisable to anyone who live locally to me

@ghislaine - I've got a pretty good handle on the options for surgery in the UK and I've never heard Catherine Milroy mentioned. Quite why you'd be referred to her by Kristina Gordon who should know this stuff. It seems to be a split amongst the surgeons as to compression to life, Mr Munnoch told me yes, Dr Klasmeyer and Mr Karri both said no. They can only go on their experience I suppose.....