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.

@TheSnootiestFox

Because the professional association for cosmetic and plastic surgeons wrote to its members yesterday and told them to suspend surgery on women with lipodema until further notice. If you were in any of the Facebook groups you'd know this. Dr kolar in Harrogate has actually been quite difficult about refunds too. And no, I mean the surgeon's insurance, they're unwilling to operate as they're not sure that they are insured to do so. Yes it is ridiculous I'm booked in or 2 rounds of lipo with Dr Gupta in a few weeks and am waiting to see if it can still go ahead.....

I spoke to Dr Wolf about this and he said there’d been no such edict. My surgery is going ahead as planned.

I did find this instagram post from Kliniken in Harrogate which perhaps is the source of this purported development: www.instagram.com/p/CcBGdx_qIG1/. It does seem an unusual interpretation of the NICE guidelines.

I am pretty certain I have this. I am like 2 completely different bodies attached to each other. My legs are like trunks with no shape. You cannot see a single muscle and my knees are huge. I have no ankles. I am overweight now but it’s all mostly in my legs which are heavy and randomly painful. I had never heard of this until a few months ago it was like a lightbulb. I really am scared of surgery though so i plan to try to lose weight (1st so far) and see what it looks like or if I get really stuck at some point with a plateau and then reassess my options. I asked my DP and showed him my legs compared to a photo online he said he could see why I thought that but to give it a few more months

I think no one knows me here so I am going to post a photo. Fuck it. 🤣

How do you get a diagnosis in the U.K.? My Gp is a dinosaur. They are just going to tell me I am fat. Is my best plan to lose more weight?

The skin on my thigh is always cold, even if it’s warm. I’m a 12-14 on top and 16 on bottom now. My ankles aren’t swollen here but if it was hot, they would be. I hate the lack of any actual knees and the weird lumps on the backs of my thighs, it doesn’t look like normal cellulite to me? And why do I have fat knees at the back?

I got diagnosed with oedema of lower legs by a physio years ago. I had normal blood tests so nothing happened. Then the swelling got really painful at night so my GP prescribed compression socks, without even looking at my legs. I wear them every day during the day (not in hot weather though) and as long as I walk or exercise every day it's bearable. Then my upper arms started to swell a bit and get painful, and they look lumpy and droopy. The GP couldn't see anything so again nothing happened. I saw a massage therapist recently who thinks I have early/mild lipoedema. I've had really bad "cellulite" and flabby thighs for as long as I can remember, I just thought it was family genes, and my bum is like two saddle bags. When I googled lipoedema I thought this is definitely me, I also have thread veins on my legs. No-one around here can get hold of their GP so I haven't even tried. I bought compression sleeves and put them on if my arms are really aching. I don't expect much from the NHS, but I could really do with an official diagnosis and also advice as to whether I'm using the right compression wear and am I putting it on correctly. I'm just winging it right now.

So, I saw three consultants. Two said I had it and one said I didn’t- therefore I had to keep searching until I had a majority for or against.

On the NHS, a Lymphodema nurse may be able to diagnose you or refer you to a clinic - the U.K. clinic for this is at St George’s in London.

I saw three private consultants- Anne Dancey (Birmingham) Dr Gupta (London) and Dr Czarnecka (in Germany- which meant I had to fly for the day to Berlin). Anne Dancey wrote me my official diagnosis letter and it cost about £250 to see her.

The Facebook group ‘Global Lipoedema Awareness - Surgeries/Doctors is an amazing resource for surgery and Talk Lipoedema is an excellent U.K. charity with more info.

Thanks @Cherryana
i gather lipo is about £15k per round? And you might need multiple goes? I also didn’t see many doing WAL which apparently is a very good procedure. I wouldn’t even know where to start. What I want to know is if you don’t get lipo, will it just progress and get worse? From what I have seen, you do need to keep weight off to not exacerbate it further

I went to Germany because I needed two ops - cost 7K (all in flights, ops) but I was quoted 45K in the U.K. - which was for three ops. In Germany, they have the best surgeons who have been treating the condition for longer. It is a big deal (mentally) to go abroad for surgery but practically it is not a holiday but manageable!

It’s a life long chronic condition which means management of it doesn’t end with surgery and so being careful of diet, is also part of the management.

That is 7K each surgery.

@GentleGiantOctopus my body is just like yours. I personally would say it's just being pear shaped and having cellulite.

I have lipedema, it was triggered by the menopause a good few years ago (I'm 65) but according to my mother my great grandmother had 'legs like yours'
I really had to self diagnose and go to my doctor who looked it up, agreed with me and then said "Losing weight will help" 🙄
To be fair I was very overweight and have since lost six stone by following a low carb anti-inflammatory diet but my legs are still the same old lumpy shape! I have the typical ankle cuff and large lumps of fat above my knees plus the lovely porridge thighs. On the plus side my calves reduced by 3 inches each but I think I'd be a 'normal' weight now if I didn't have the big legs.
A couple of years ago I developed a small amount of lymphedema in one leg so I have to be careful not to cut or graze them or they weep fluid.
I don't need proper compression tights/stockings, I manage with normal support tights and knee highs under dresses, always dresses...

I think you are a Stage 1, I'm probably a Stage 2 but I have the wobbly upper arms as a bonus 😄

There's some good groups on Face that I find helpful.

This thread was hugely triggering for me. Jesus Christ, I started reading the OP post and was expecting to see a very bugling bumpy set of legs. What was shown was a slim woman pinching her fat. Then the actual OP legs were shown and she is clearly one of those women who claim they are so fat and ugly when in fact they are about a size 10 and nothing of the sort.

Honest to god I feel so much worse about my own hideous bumpy legs riddled with bugling varicose vein's after comparing them to the OPs.

My mother has severe lymphoma, she was always a skinny woman until that happened to her in her seventies, then her legs became huge and very painful from hip to toe which affected her mobility.
Fortunately, not being British or living in Britain she has treatment for it, including liposuction, massage and inflating wraps through her health insurance, or I swear her legs would explode.
What you have doesn't look like it op, it looks more like common cellulite.

@Menora

I think no one knows me here so I am going to post a photo. Fuck it. 🤣

How do you get a diagnosis in the U.K.? My Gp is a dinosaur. They are just going to tell me I am fat. Is my best plan to lose more weight?

The skin on my thigh is always cold, even if it’s warm. I’m a 12-14 on top and 16 on bottom now. My ankles aren’t swollen here but if it was hot, they would be. I hate the lack of any actual knees and the weird lumps on the backs of my thighs, it doesn’t look like normal cellulite to me? And why do I have fat knees at the back?

I think you look like you have lipoedema. If you email the Talk Lipoedema charity, they can email you a pack to take with you to your GP.

@crimewatcher

This thread was hugely triggering for me. Jesus Christ, I started reading the OP post and was expecting to see a very bugling bumpy set of legs. What was shown was a slim woman pinching her fat. Then the actual OP legs were shown and she is clearly one of those women who claim they are so fat and ugly when in fact they are about a size 10 and nothing of the sort.

Honest to god I feel so much worse about my own hideous bumpy legs riddled with bugling varicose vein's after comparing them to the OPs.

You can be size 10 and have lipoedema.

My posts seem to be cut off...

It should have said you can be size 10 and have lipoedema.

I definitely have this. Self diagnosed, admittedly, but definite. I'm also hyper mobile too... never put the 2 together.

Has there been any further development re offering lipo on the NHS?

I've always thought my legs were weird. I am fat anyway but the fat on my thighs and buttocks is really really hard, I can't pinch it like I can my belly. Not sure if lipoedema but it's strange.

Wow, I think I might have this mildly. Have EDS and a lot of hypermobility.

Thank you. I am meant to have an appointment with my GP tomorrow but I felt like cancelling it all night because I am just sure they will tell me I am just simply fat and it’s normal cellulite. It feels like I have peas under my skin? The fat parts on my stomach are soft and everything on my legs is hard and lumpy. Thanks regarding the letter I am going to check it out. I genuinely have been feeling really upset about this for such a long time, I don’t think I realised how much it’s affected me. In the past 6 months 2 separate children asked me why my legs look so ‘weird’ and lumpy (they just little kids not their fault, I was wearing PJ shorts). I am currently doing a low calorie diet and struggling to shift weight off because having heavy legs makes it harder to exercise easily. I’m upset about all the time I have spent hating my legs and now upset about possibly having something that could get a lot worse and not being able to afford surgery

Don't cancel!

My lipoedema has gotten worse with each hormonal event. I noticed my legs were thicker after puberty, then again after being on the Pill and worse after each pregnancy.

The lumps under the skin are classic lipoedema.

Mine was triggered by an early menopause I think last year. I’ve had 2 kids and been on the pill - they have always been large/chunky but they have never looked this bad with the lumps or the knee fat pouches. I have downloaded some info from the website you recommended to take with me. I have cried about 3 times today I think it’s feeling stress and anxious!

Good luck tomorrow. Be prepared for the GP thinking you're talking about lymphoedema rather than lipoedema. Just by reading up on the condition, you'll probably know more than them.

I honestly can’t say enough I am grateful to this thread and my GP! She had done her research before me coming in and looked at my legs and measured them and felt the lumps. She said I was clearly disproportionate to my top half. She gave me a diagnosis and referral to a lymphoedema clinic for advice/support.
I will just have to see what happens next

I am loathe to even consider Turkey for treatment although she did suggest it

That's amazing, @Menora! A supportive GP is such a valuable thing!

If you haven't joined the Talk Lipoedema Facebook group, I'd highly recommend it!

Interested to know if I have it. My Mum has it - she was told when doctors discovered she had had a huge tumour growing in her leg for years. Not visible due to the lipoedema. She beat the cancer but she was very lucky.

I’ve always thought I’m the classic pear shape -bigger bum and thighs than my top skinny half. Never had pain or weird lumps. Is it worth being diagnosed? My mum suggested I have it along with my sisters as we all have the same figure but it doesn’t bother me apart from aesthetically. I’m a size 10 and a healthy weight.