Lipoedema chat

[Lipolass]

@thesnootiestfox
@smallbox
@wherestheforum

I hope you don’t mind me tagging you but you all mentioned on another thread that you have lipoedema and I’ve never met anyone else who’s been diagnosed so I thought it would be nice to chat.

I was diagnosed a few months ago but I’ve suspected I’ve had it for years. I’m stage 2 allegedly but I think it’s probably more like 2/3 or even 3 looking at others’ photos. I have it in my arms and legs.

I’m really hoping to get surgery in the next year in either Germany or Cyprus (one of Dr Ghods’ team has recently set up there) but I’m more than a little terrified!!

How are you all getting on?

Hi can I join in too. I was diagnosed with lipeodema about 5 years ago and I wear toe to thigh compression 24/7 because of it. It's always nice to meet other people in the same boat.

Oh hello! Lovely to meet you all 😀 in answer to your question, thoroughly fed up today as I've spent just around 20k on surgery/travel and I still can't wear bloody shorts in this heat 🤣 How's every one else?

It’s so nice to have company! I feel quite alone with all of this and I’m reluctant to tell people as I think they’ll just think it’s an excuse for being fat….

I’m waiting for a referral to the local lymphoedema clinic for compression. @missnevermind what's it like wearing it in this heat??? I really like the idea of compression but I do wonder if I’ll just be like a big sweaty stuffed sausage!

@TheSnootiestFox How have you found surgery? I’d like it in the UK but I know they are much more conservative here on how much they remove so I really feel forced to go overseas. I’m sorry you feel like you can’t wear shorts -do you feel like there is an improvement?

Legs in the UK, a complete waste of time. Arms in Germany, amazing! Once the fat has gone the skin is still loose and certainly I'm struggling around the knees and calves.

@tinyrebel
@countrydiary

Just tagging you in in case you’re interested in chatting!

I think I may have this. My legs have always been huge no matter what weight I am. I also feel pain so easily on my legs and upper arms and bruise like a peach. Not sure if it's worth getting a diagnosis? Does anyone have photos they could share?

I was just looking at people’s arms after surgery, they look fab! I do worry about loose skin. Also that it will re-occur in different places and turn into a sort of surgical whack-a-mole!

You’re definitely describing some classic symptoms there. Mine currently have huge blue bruises that appeared out of nowhere.
I’m not brave enough to post photos here but have a look at some of the Facebook groups as they have loads.
My GP didn’t know anything about lipoedema so I paid to see a specialist nurse privately and she said there was no doubt at all that I have it…. Compression is supposed to help so if you can get a diagnosis, I think it’s worth pursuing.

I think compression is a bit of a misconception but I know lots of people who swear by it. I can't possibly see how it can help unless you have fluid and if you do, then it's lymphedema you have and not lipoedema. It can't stop the fat growing so I can't see the point in being so uncomfortable all the time!

@Lipolass thank you - I'll join the Facebook groups to see some examples. I will also contact my GP to see if they are any use then possibly go private if not! I have had so many issues with my legs since having my daughter. Stiffness and pain around my Achilles, and calf pain out of nowhere! I noticed my upper arms looked like there were bands around them, like I had been wearing a tight top. I hadn't, the fat is just gathering in strange patterns 😞

Hello! Lipoedema sucks! Sorry we're all in this boat.I have had two operations (full front legs and full back legs) with Dr Jorjani in Germany and am due another 3 then probable skin removals. I am stage 2/3 and have it basically everywhere. Compression in this heat is awful and is making me a grumpy bitch. I had my most recent operation nearly 4 weeks ago so have to wear it 24/7 for now.

Was it Mary Warrilow? She's fab. She diagnosed me over zoom.

Yes it was Mary Warrilow @SmallBox she is great isn’t she?

I’m quite jealous that you’ve had Dr Jorjani for surgery as he seems to have such great results. Do you mind me asking why you need another 3 surgeries. Is it arms and them more on legs? I’m really worried about needing more than two on my legs but I suspect I will. I’ve got terrible saddlebags as well as awful legs and arms and I’d be so glad to see the back of them…..

@Lipolass I've had full front and back legs and the next one is hips, (and more back legs plus up to my shoulders apparently) then tummy (and more front inner thigh) then full arms. Like I said, it's everywhere on me. It got much worse after my second pregnancy. I never had it on my tummy before - I was quite a dramatic pear/hourglass and I quite liked my curves pre-kids when I was a size 14 and not the lumpy mess I am now!

I also had some quite quick regrowth on my legs and new noticeable growth on tummy after my first surgery - clothes stopped fitting in a matter of weeks etc despite no change in diet or lifestyle. I'm also very much in the middle stages which looks a bit off as for the first time ever my legs aren't the biggest part of me but I have a huge spare tyre round my hips so my clothes hang differently. I am trying to 'trust the process' as this is the awkward bit but honestly it is disheartening at the moment.

Dr Jorjani does have great results but I'm not in his fan club/cult that seems to exist on FB. He's a good surgeon and I'm pleased but the way some people carry on you would think he was the second coming!

My DD has this, can I ask if changing your diet helped at all? I understand this is hereditary, but it missed me and my DM, but my DGM definitely had it, also some of my Aunts had it. I have raynauds, which apparently is connected. Thank you for post, helpful to read

Hi,

I was wondering whether I could join this thread too? I don’t have a formal diagnosis but I believe very certainly that I have lipoedema. It’s only a term I realised existed about a month ago and I was in genuine shock when I read about it as finally things have made sense.

When I hit puberty I suddenly developed large, wide calves. I was teased mercilessly at school and honestly have not worn shorts or a skirt since. During my teens/20s I was a size 12 on top and a 16/18 on the bottom and it never made sense. I was diagnosed with hypermobility syndrome around the same time which I thought explained the massive bruising I would get (and still get) on my calves. When you pinch the skin on my calves it’s like little lumps underneath it. Similar on my thighs but not on my stomach.

Since having children I’ve put on lots of weight which to be fair has evened out my figure. I’m currently dieting which I know will make me look more out of proportion but losing my stomach will help my self esteem I think (and health of course.)

I was on holiday with my children a few weeks ago and felt so sad that I’m too self conscious to even go swimming in the sea with them. I’ve vowed to go in next year (maybe in a pair of board shorts to cover my saggy knees) and try and live my life a bit more.

Sorry for the essay. I feel so sad about this in a lot of ways. Particularly for the way I felt growing up as didn’t understand why my calves were so gigantic and assumed I was just grossly overweight. I actually really wasn’t looking back.

I’m not sure if seeking a formal diagnosis would help really as I’m not in a position financially to have any surgery. Just the emotional aspect of knowing others are in the same position might help.

Hope you’re all okay!

I think I have this. I look just like the photos I've seen on facebook - but early stages.
I was pretty large and lost half my body weight - despite being severely underweight - my thighs got down to a size 8/10 but the rest of me was a 4/6 (and I'm tall).

I've put weight back on and am a size 14 - technically not overweight but my thighs wouldn't look out of place on someone size 18/20.
I do a lot of sport and so my legs are not too lumpy - but very obvious when squeezed.

I can't afford private surgery - but I do wear compression a lot and have boots (up to the crotch) which simulate massage and help with blood flow. I think my only option is to loose a lot of weight again.

Hello @Foreverbaffled @ThePittts @Pinkprescription
Everyone’s welcome!

@ThePittts There is often a familial link but not always. A low carb diet definitely helps me. It’s the only way I am able to lose weight for a start but I also think that it lessens my symptoms in terms of pain. I think there is some evidence that it can reduce inflammation.

@Foreverbaffled There are a lot of people on lipoedema Facebook groups with hypermobility and/or Ehler’s Danlos Syndrome.

I put off getting a diagnosis for ages because I thought it was pointless but I think it’s important to get a diagnosis because if nothing else, it ups the numbers of people that the NHS is aware of. The NHS is also undertaking some research and a review into Lipoedema so there is always a chance that liposuction might be available again at some point (I think the results are published next year) so I’d rather be in the system than out of it!

It really sucks though. I’ve just been on holiday and I wore board shorts as I just can’t be in swimming cossie. It really helps but I still felt really self-conscious as my lower legs are really shit (and my uppers are even worse)!

@Lipolass that’s a really good point actually re diagnosis and achieving better understanding from the NHS. I think I’m a bit worried I’ll just be told I’m overweight and it will improve with diet/exercise alone. My plan is to lose three stone (in the process already) so I might see the GP when this is done. Would love to be part of research!

Well done for getting in the shorts this summer for the beach. I sort of refuse not to enjoy the sea because I don’t fit a socially constructed idea of what is beautiful. My calves are worse than my thighs so total exposure for me but I also don’t want to restrict my life.

Do you know much about whether lipoedema is always progressive? Mine has got worse since having children and it frightens me that it will continue to get worse steadily now. My grandma had it dreadfully but maybe that was lymphoedema? It was never really mentioned - I assumed at the time it was because she was obese.

So good to see lots of people on the thread.

Hullo, l have lipodoema too. It is in every conceivable place where it is possible to be. My legs are very large but if I could have liposuction l would choose my mid-section, particularly the huge saddle bags on my hips as they make it so very limiting when it comes to clothes.

@TheSnootiestFox May I ask why your leg surgery in the UK was a waste of time?

Thanks for tagging me. I’m on a VLCD at the moment because I really want to lose as much non lippy fat as possible before considering surgery. I’ve been everything from a size 8-10 to size 20.

I dress in floaty harem trousers and loose tops - and am distraught if anyone catches sight of my legs.
I’ll probably end up having surgery in Italy, as I speak the language pretty well and, being shallow, like the cosmetic results.
I’ve found it’s got worse after each of my three children.

Hi, fellow lipeodema lady. Can I join? Since menopause I am in a right old state. Legs like tree trunks, though I try to remind myself that they are sturdy and work, but I just would love to occasionally be elegant of show a neat ankle. My legs are so, so awful, as is my bum.

Becaue3 is was 11lk and he only removed 5 l. I had my arms done in Germany and he removed 7l for 3k.

@TheSnootiestFox thank you - I did see online that the cost in UK is around £11k and it mentioned up to 5L of fat removal. Wonder why there's a limit?

Are you able to share the details of where you visited in Germany? Really need to start doing some research. I'm struggling daily with pain at the moment. Thank you x