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.

Following with interest as I believe this may run in my family.

Having said that those pics look like normal cellulite to me ... asked my girlfriends and 6 of us all had it in our WhatsApp group

@Willyoujustbequiet -

Catherine Milroy works with Peter Mortimer and Kristiana Gordon at St George's so I think that's why. But I agree, I never heard her mentioned as a Lipedema surgeon. She seems to do a lot of top surgery. I was googling her before my consultation and ended up deep in FTM trans forums!

Interestingly, Dr Gordon said she would not recommend Anne Dancey as her approach was too aggressive.

@ghislaine oooh, interesting. I wonder if she's up and coming in the lipoedema world? And that's interesting about Anne Dancey. I'm sure that she would change her mind if she was the one having to find 10k an op to only have 5 or 6 litres removed at stage 3 or 4!!

@ghislaine I also desperately hope the technique makes it across the Atlantic. I found it very interesting, especially when they showed how it spared the blood vessels. Those who use the technique argue it’s no harsher than a deep tissue massage. Maybe in a few years.

I have also been reading about the keto diet being beneficial for lipedema sufferers. I have to admit that I tend to eat a very carb-heavy diet. I also ate a very sugar-heavy throughout my youth (think endless fruit, cereals and low fat yoghurts laden with sugar) - this was back when fat was thought to be the bad guy!

My first thought is to ask whether you've been seen by a rheumatologist due to the possibility of EDS, as you could easily have very loose skin that you are mistaking for something else.

@TheSnootiestFox Ah, sod it, as you say I’ve already bared my cellulite, so you might as well see the rest.

Excuse the filthy old dusty mirror and the stubble, ladies

I would guess that if I have lipedema, I am in stage 1, but I am noticing a build up round my lower legs these last couple of years (diet has not changed and has in fact been a bit more restricted). The only thing that makes me question lipedema is that I am not completely symmetrical - the ankle cuff forming on my left leg is far more advanced than on my right. Plus I have that delightful little roll of fat under my right butt cheek, but not on the other side.

@GentleGiantOctopus God you look amazing!! Yes, I would agree on stage 1. The curve on your thighs is indicative and I can't see your cuffs but then I'm used to my 22 ins calves but its not unusual to have different sized legs. My left is bigger than my right and my ankle cuffs are actually 2/3 the way down my calves! At your stage in the game, I would recommend seeing a guy called Dr Gupta at the Hunar Clinic. He could probably sort that in a one-er for you x

@NeverDropYourMooncup I haven’t, no. As with lipedema, I haven’t (yet) suffered any major issues that made me feel I could justify seeing a GP. I do have a lot of the symptoms of EDS though - hyper mobility, constantly clicking joints, soft skin, easy bruising, etc.

What makes me think it’s lipedema (though doesn’t discount EDS) is how scrawny my top half is in comparison. There is almost no fat on my upper half, apart from my upper arms and a small amount around my belly. So it’s strange that my body is beginning to lay down fat around my ankles, when the upper half needs it more! It’s crap because there are summer dresses I’d like to wear but I just look rubbish in ones that expose my back, shoulders and arms.

My legs look very similar to yours and I am beginning to suspect the same. I have always felt "little balls" under the skin on my thighs and it can be quite painful. What really made me think though is this summer, I can see I have got fat around my knees - they look like my grandmother's knees! She had quite limited mobility due to her big legs despite being generally not overweight.

Also I have had real problems with varicose veins and my doctor said he would have expected someone my weight not to have them. The thing is I am not overweight but my thighs really are - I always wear out jeans where my thighs rub together!

Op I’d love to have your legs, mine are horrendous but I am 45 now and have started giving less of a shit about what people think of me. I have had crap legs for 20 years now, a couple of years ago I started wearing dresses just below the knees again and was very self conscious of my fat bulging ankles, I had maybe a couple of women look horrified at them and then nothing, maybe I just stopped noticing! Anyway I also have milky white podgy legs that bruise if you breathe near them. But they work and I can’t be arsed to care about if people think I am gross or not. The top half of me is fairly slim.

@TheSnootiestFox Thanks, that’s so kind, but I must admit I couldn’t quite bring myself to post the ones in the less flattering light! The skin texture looks a lot more dimpled/porridgy in certain lights.

At the moment I think I just want to know if it is what I think it is, and how I can slow the progression, especially as I get older. It may need me to re-think my diet and exercise. Then if it gets worse and starts to cause significant pain (the ankle cuff does hurt occasionally), I can think about treatments.

I wonder what Dr Gupta thinks about the manual extraction technique for removing the little nodules that can’t be sucked out by liposuction.

@Zerogravity I also have a little bulging varicose vein just above the back of my knees. And some little red capillary veins here and there too.

I don’t know about you, but it would be a weird relief to know that there might be an actual condition at the bottom of all this, and it’s not my fault that despite all my years of careful eating, weight loss and religious walking, my thighs still jiggle as I walk and spread like a puddle when I sit down.

I sort of feel that if it’s lipedema, I might actually start trying to understand my body and cut it some slack.

@SinisterBumFacedCat. Awesome name! You are so right, and as I get older I do feel less self conscious. It was definitely worst in my teens, when I just couldn’t understand why I didn’t have the youthful, smooth doe-like legs of my contemporaries despite weighing so much less than many of them.

I sort of feel that if it’s lipedema, I might actually start trying to understand my body and cut it some slack.
I know what you mean but even if it's not lipodema I try not to beat myself up. I was at the beach with two friends and I know for a fact that they are far less active than me yet I have the tree trunk legs! It really is down to luck/genetics in any case.

@GentleGiantOctopus
Another vote for Anne Dancey! She knows her stuff inside out. What country are you in?

Your legs look great to me. Mine are so much worse!

I've no pain though. Is it always accompanied by pain in later stages?

Following ad I think I have this and am trying for diagnosis atm

I have lipoedema

it has ruined my childhood and teenage years ..

I have, as an adult, control over my style of clothing and an understanding of what makes me feel more confidant and comfortable.

Its a genetic curse.

thank you for those who shared links.. i will enjoy reading these 🌸

sorry, posted too soon. Going to be a bias towards diagnosis, since liposuction is one of the main treatments.

It’s why I was considering some of the NHS specialists who don’t offer lipo themselves.

Oh god, thought I had posted to soon and hadn’t. Duh. I was just trying to say that my main concern is to seek out an NHS diagnosis, rather than going to a plastic surgeon for diagnosis, however qualified. Just for my own peace of mind, really.

I am prepared to travel anywhere in the southern half of the UK! London looks to be the best option so far (Kristiana Gordon), albeit Birmingham would be easier.

@GentleGiantOctopus

the NHS are going to be offering treatment soon.

www.dailymail.co.uk/health/article-9798053/Women-tree-trunk-legs-caused-lipoedema-given-liposuction-NHS.html

That is very exciting news! I hope they say yes. It would be hard for private health insured to deny coverage then on the basis that it’s just cosmetic.

@QueenBee52 That is potentially fantastic news for those with lipedema. Fingers crossed!
For me though, I doubt I’d be offered lipo, even if the NHS policy were to change, on the basis I’m not really suffering any pain and it’s not impacting on my day-to-day life and preventing me doing the things I enjoy - although I guess it could progress.