Lipedema anyone?

[Ipcressa]

I think I may have used the American spelling.

I have had heavy looking legs all my life - now late 40s. It started post puberty that my legs were always a size or two bigger than the rest of me. Having tree trunk legs means I could never look elegant.

Even when I was underweight - size 6 on top - my legs let me down - still a 10 even with a size 4-6 waist. I am also tall.

I always thought of lipedema in terms of the more extreme versions. but I would say I look like Stage 1 here

www.lipedema.net/4-steps-to-a-lipedema-diagnosis/

Or lady on right here

www.lipoedemmode.de/en/lipoedema-community/

Now the articles I have read say up to 25% of women have this. Kind of makes sense as I would say that's about the percentage of women with heavy legs.

There's no real treatment on the NHS but now I am thinking lipsuction may be the way to go - might help me looking more normal, more elegant and less chunky (despite being slim on top).

Anybody else have this?

I have this- I went to a new GP and he immediately said I had it and even gave me a leaflet about it straight away. The relief of getting a diagnosis!. I did explore liposuction (a type called water assisted) but decided against it. What helped me massively was being able to say I have it because people stare at my legs/ankles and think I haven't noticed them looking! My legs bruise incredibly easily and my lower legs always feel cold but I have had it since puberty and fortunately it hasn't got much worse. Maxi dresses never go out of fashion for me and neither do wide leg trousers! I know it isn't easy but you are not alone
www.lipoedemaladies.com/

I have it too. It is still not understood as much as it should be but things are getting better. I am of average height but have short legs in proportion to my torso so wide leg trousers emphasise the problem. Straight leg trousers seem to suit me better. I find empire line dresses are the most flattering as they skim my shape and emphasise my smaller waist.

I am just looking into this myself now. Yes to the cold heavy legs and actually, small children have asked me why my legs look like they do. I have not worn anything above the knee (outside of the house) for 20 years. I am 12-14 on top (36in bra) but 16-18 on the bottom. I have asked for a referral to a lymphoedema clinic for advice

I've been looking into this too, but I'm terrified of going to the doctor and being told I'm just fat. Not sure I could take the humiliation.
I wish there was a definite test for it though.
I've always just assumed I was 'pear shaped' as my waist is so much smaller, but now I have to buy shirts a size or two bigger as my upper arms are huge.

Please keep us updated.

Things I have started - taking magnesium, zinc and vitamin c
carrying on with healthy eating, drinking water and walking
i have asked for a referral to a lymphoedema clinic. I did an online consultation and just made it factual and included a link with info and brief history and a photo. Preparation is key! Will keep you updated

Hi! I know this thread hasn’t been posted on for a while, but I was looking for some information about this condition, as I’m pretty sure I have had it since puberty. It is somewhat better post-meno’ and keeping my weight down is also easier. Anyone had liposuction and found it helped?

I've found a few pages on facebook where people are happy to share their stories and photos.

@Craftycorvid sorry I know this is a late reply, I have been diagnosed with Lipoedema and have since had liposuction to remove the diseased fat. I have hardly any pain now, the nodules under the skin have gone and I can normal clothes. There are loads of groups on Facebook if you search for lipoedema you should find them

@peanutbutter00 , are you in the UK? How did you go about getting diagnosed?

@SheilaWilcox I had a private consult with a surgeon (Anne Dancey), an online consult with a German doctor too when looking in to going abroad for surgery. I think Mr Karri will diagnose too. Cost was £200 I think for the appointment and diagnosis letter. I have heard too many stories of ladies trying to go to GP's who are just not informed enough so I thought I'd skip that step and see a specialist

@SheilaWilcox sorry, yes I'm in the U.K.

Ah, thank you. I'm just so worried about going to the GP, just to be given a diet leaflet!
To be honest, I don't know if I am just fat, or if it is Lipedema.

@SheilaWilcox I know what you mean, there's quite a few images online showing how it presents in legs. Typically they are bigger than the rest of the body, sometimes hard nodules under the skin. The fat can feel cold to the touch and sometimes bruises easily. Some people have pain but not everyone has it in earlier stages.

A big giveaway is if you have lost weight in the past and your legs have remained the same shape (where 'chunky' ankles have remained and fatty knees)