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?

That’s incredibly cheap @TheSnootiestFox was that some time ago?

Nope, 8 and a half weeks ago!

It's bloody NICE and they're meddling 🙄 erm, Germany wise there's loads. I went to Dr Klasmeyer but Dr Ghods is really popular too.

*their

@TheSnootiestFox
wow!! I had no idea arms could be that cheap. I discounted him for my legs as he seems to do lowers/uppers separately rather than fronts/backs (which I’d prefer) but I’ll go back and reconsider! I know he has a really good reputation on the surgical Facebook groups.

Try the Global Lipoedema Awareness - Surgeries/doctors page on Facebook @OhhBiscuits (sorry I don’t know how to link to it). It’s great for this kind of info.

@TheSnootiestFox @Lipolass thank you both!

Hi! Followed you here from the fat legs and the beach post. I'm undiagnosed as have never seen the point but it's very obviously lipodema. It's been the bane of my life since I was in my teens. I'm currently a bit overweight due to a period of illness, eating badly and no exercise (but getting it back off again now), but at my usual size 10-12 my legs are way out of proportion with the rest of me. I've been a fitness instructor but even then I got the "oh you just need to do more exercise" stupid comments. My legs never see the light of day in public, not even on holiday.

Can't justify the cost of removal unfortunately. But I am in a few FB groups and have seen people's results, it's very impressive.

Hi everyone, I had an appointment with my nurse practitioner today who confirmed it is pretty obvious I have lipoedema. She was just very sorry and that there's nothing that can be done.

I asked her did she have any patients who paid for surgery - she looked horrified and said it would just come back. Is this the case? I felt quite deflated by that comment.

Being referred ti physio for the pain in my legs. Has anyone else had physio?

I had liposuction on my arms with Dr Wolf last year. I’m currently looking into going to Europe for my legs. You definitely get more bang for your buck there and I agree, a better aesthetic result. I have pain and bulk but I also want to have nice-looking legs, damnit! I’m in the process of booking consultations with the following:

Dr Nowicka
Dr Czarnecka
Dr Jorjani
Dr Burgos (not keen on the 10 days no fly restriction though)
Dr Majewski
Dr Duma

I’m an early stage 2, and these ones seem to have the best results for my type of legs. I did my arms as a trial run to see what recovery would be like. My skin seems fairly elastic so I’m hopeful I won’t need a thigh lift as well.

Waves 👋🏻 May I join in? I’m fairly sure I have this - legs and arms. I always had chunky little legs as a child but puberty sent everything wild. My legs are the classic column shape with not much ankle definition, doughnut knees and definite saddlebags. I bruise extremely easily, have had varicose vein treatment and my upper arms kind of hang over my elbows. I’m about a size 8/10 but trousers are usually too tight on my legs unless stretch fabric or wide leg. Dieting makes almost no difference. The weight goes on my trunk, slightly on my bum but no change to arms or legs. I seem unable to build much muscle tone there either.

I am considering treatment and thought there was a person in the UK who was recommended? However, they were also suspended from practice for a period by the GMC which naturally concerned me a bit.

I too would worry about loose skin as I’m not at the age where anything would be twanging back into shape!

Hello everyone!!

I have this…I had two leg surgeries with Dr Czarnecka in Germany. I have it in my arms but can’t face another op at the moment.

I love my legs but I have bigger boobs, back and arms right now which it’s hard to know if it’s from the surgery as I had (unrelated..or is it????) hip issues. Just had a replacement so slowly getting back to being more active.

Personally, apart from getting a diagnosis, I wouldn’t bother with lipodema surgery in the U.K.

@TheSnootiestFox how long was your arm recovery?

Oooh! How was your experience with Dr Czarnecka @Cherryana? I do like the shape she gets. I can’t get an appointment for a few months but do you know if she does the whole leg in one op? Or is it mandatory to have uppers/lowers or fronts/backs?

@Craftycorvid the dr you’re thinking of is Mr Karri in Yorkshire. He was suspended by the GMC for a year for falsifying patient records but I believe he is operating again now.

@ghislaine she is lovely. I had a very positive experience with her and her team - twice!! Only thing is, I think she does most of her international patients in Poland now. I saw her in Berlin and it was very straightforward, getting there, being in the clinic. She always does multiple surgeries and not the whole leg in one go. Very few surgeons do - Dr Norwika (spelling??) does but she is teetering on controversial due to the amounts she takes out in one go. However her leg shape is very recognisable and attractive.

Good luck with your constructions!

I have it badly- I look like the worst ones in charts. I am a size 24, I am overweight but so much of it is my arms, legs and hips. I do look deformed and it's affecting my mobility. No amount of weight loss or exercise touches it. I hate every bit of myself.

(I have hidden my tattoos so not identifiable)

@Patchw0rk thank you for sharing a photo. What are your mobility issues and if in the legs, is there a specific area? Your waist is tiny! I started with a personal trainer almost 2 months ago. My legs feel strong but I still feel the mobility pain. Although the scales have stayed the same, I have lost inches but only around my waist. Arms and legs are the same. I'm going to keep going and look at surgery. Don't know how I'll pay for it but will do anything to not be in pain when I walk xx

@Patchw0rk thank you for sharing your photo. You don’t look deformed ❤️

I wanted to ask about the pain thing too. I don’t feel pain if I’m stationary but in hot weather after walking my legs feel swollen and sore. Is this typical for lipoedema? Or does pain need to be present all the time?

@Patchw0rk I look similar to you. Mobility not affected yet tho. I hate it. Such an awful and poorly known condition
I am a nurse and saw a 13 year old recently who had ballooned in puberty. Huge arms and legs, tiny torso and waist. So devastating

@Foreverbaffled my pain presented in my Achilles tendon. I'd wake up each morning and it was so painful to walk. It is not sore when sitting, only when moving. I read lipoedema causes weakening of the Achilles. When I wake up, I need to tiptoe around at first as that stops the pain. It easies off once I have been walking around for a while. I also have random pains in the calves, like someone has kicked me out of nowhere. Tends to last a few days then disappear.

My mobility is affected just because my legs feel so heavy. Everything just aches when I walk. Hot weather makes me feel swollen and I just want to hide away.

@Patchw0rk
my legs are very similar to yours though more column like. You have more shapely lower legs than I do.
I’m looking at surgery but I’m very nervous tbh. It’s not so much the surgery but the idea of surgery abroad as I’d be travelling alone.

I have pain - aching, restless legs and my gait has changed - I think because of my knee pads. I also have terrible lower back pain and I think that may be connected.

I think this photo better shows my deformed legs.

That sounds tough, @Lipolass Especially knowing you’ll be travelling alone. I guess you just need to research the clinics abroad really well.

It was brutal 😀 I'm getting there now though!

From personal experience, you won't be able to manage surgery alone abroad. I had noone to take so ended up getting my legs done in the UK, and then took my teenagers to Germany with me for arms. I couldn't even brush my own hair and I'm hard in terms of pain threshold! I certainly wouldn't have managed legs abroad without another adult.