Lipedema is shit

[PuffWideKimonoetc]

Lipedema - aibu to say it's shit, you can't get rid of it and it's hard to find clothes that look good unless wide / puff / balloon / kimono sleeve. No slim fit stuff.

I can't believe how much worse it's got since the menopause either :(

I have this on my thighs - always have despite being extremely slim so it just looks awful and summer is dreadful trying to cover just one part of me as it’s so out of proportion

Have you looked at the benefits of keto for lipedema OP?

I’m in a keto community and so many women with lipedema have had amazing results.

pmc.ncbi.nlm.nih.gov/articles/PMC10748777/

Is it the same as lymphodoema? I have it on my right lower leg. I’ve had to embrace the support stockings and learnt to put them on without fuss. At first I thought I would NEVER be able to put them on

The thing that bothers me about it is the pain. I'm not too fussed what I look like but I wish I didn't hurt.

Yanbu though

I 100% agree with that. Pregnancy and peri increased mine so much.
I started taking mounjaro a few months ago, I know it won't help the lipedema fat I just hoped to at least lose some of the regular fat, but I was surprised at the huge impact it's had on my inflammation and pain levels

It is, you’re right. However there are now many sites and much more info about it. I’m 60 and had surgery 5 years ago.
i wore a skirt for the first time in my life after my school days (which were hell) at the age of 55.

I don't have pain thank goodness. Hadn't considered keto as have low blood pressure.

Good on you @Ifeelfat for wearing a skirt. I can honestly say I am younger than you and wouldn't impose my legs on anyone. I think I hide it well with flowy sleeves and wide leg bottoms but it's so limiting.

Also the difficulty of getting it recognised- I’m off to the doctors for the third time in a week to try and get a referral for compression. It’s been round the houses with blood tests, missing results and lipedema is clearly what it is!

Yes, I have it. I had surgery as well about 5 years ago and my wardrobe is totally different because I can wear boots and skirts, now.

Its one of those things where of course there are worse things in the world than being able to wear a skirt or not, but at the same time when you are so limited because your limbs are disproportionate- it’s actually really hard.

And so I understand what you mean. It is shit.

Lipedema is deposits of fat whereas lymphodoema is swelling due to fluids (related to lymphatic system)

@Sweetbeansandmochi surgery to slim the thighs and calves? I bet that was painful and I am guessing not on the NHS?

I flew to Germany for it as they are leaders in the treatment of it. It was painful but it was fine and now 5 years later it’s a distant memory and so worth it. I had my calves done first and a year later my thighs.

Each op cost around £7K all in (flights, accommodation, aftercare and the private op)

@dementedpixie thank you. I googled it after posting, doh! It seems like the treatments are similar

For anyone interested in surgery there are great facebook sites. One, Global lipedema awareness - surgeries etc is excellent with a huge library of resources of surgeons across Europe and beyond, with before and after photos from women like us and every possible question you could pose.
For those in the UK who don’t want to go abroad there are only 3 or 4 surgeons I believe. Two are in London and the one I went with also has a facebook site set up by his patients called Gupta Girls.
You’re looking at around £6k an op, and there are limits to the amount of fat that can be removed in one op, so you could be looking at a few ops.
Personally, especially if I were young, I would prioritise an op over everything else in my life as it is so life changing. Beg, borrow, sell, get a 0% credit card, whatever you need to do. And I’d go abroad if I did it again as the London doctor, although lovely, is too expensive for arms and legs if you need both.

just my opinion.

Can I ask how you were diagnosed? How old you were when it started and if you've always had symptoms?

I have gained weight since COVID but feel this is disproportionately on my thighs/legs. I'm 45 and keep seeing pics online and wondering if it's this.

Whatever else you do, don't try and get a diagnosis from anyone within the NHS save Mr Munnoch in Dundee if he hasn't retired yet! They'll gaslight you for years and tell you it's all in your head and you just eat too much. Try and see Mr Karri or Dr Gupta although if you go for surgery go to Germany, I'd really recommend Dr Klasmeyer in Cologne.

And in answer to your second question, I had noticeably disproportionate legs by 6 or 7 but the varicose veins etc didn't properly kick off until I was about 14.

@DoggieNamechange my gp actually diagnosed me around 6 years ago. I’ve always had huge ankles and calves, from the age of 8 or so, fat thighs too but lots of women have extra weight there.
As a 14/15 yo I remember being so distraught about them. I saw a couple of doctors but they just advised general weight loss…
then I came into some money and decided to go for liposuction. My gp was the first port of call and he diagnosed it and I went to a local clinic, but they did very little. The first surgeon I spoke to about liposuction told me he didn’t treat those areas, just stomach, as he didn’t do the 360 work needed. The more I discovered the more I realised you need a specialist lipedema surgeon due to the type of lipo needed - the wrong type can cause significant damage.
There is more info around now but many GPs are still ignorant about it.
I have no varicose veins btw, and my ankles aren’t beautiful but I don’t get anyone staring at them anymore.

In terms of my story regarding it - I have always been small (size 8 -
10) but my calves developed an odd shape from age 13. I didn’t have any ankles but they went straight out and it looked like I had an ankle cuff. I never experienced any pain with it. I also had a sort of column shape to my legs. I never wore skirts or shorts and felt so self conscious.

I heard about it on a social media thing on bbc3 (?) and a girl called Hollie in about 2016/17. I went to see Dr Gupta first and he looked at me and said I didn’t have it. I needed to go off and live my life..I think partly because I just looked fit and small to him and he didn’t get how having disproportionate and strangely shaped legs had affected me.

So I left it for a few years and read and an article in the daily mail about it. The surgeon in the article seemed to work with more difficult cases so I thought if anyone would know. - she would. So, I went to see the surgeon from the article called Ann Dancey. She said I was a classic case and wrote me a diagnosis letter.

A year later I went to Germany for the day to get a third opinion and saw Dr Czarnecker in Germany. I had decided if she said I had it, then I would book in for my ops straight away. Which I did. Five years on - it’s all good but I have put weight on every where else now and so the struggle never seems to end!!

Mr Munnoch has retired now, unfortunately.

I apparently have it in my lower left leg but I'm not entirely sure because very occasionally the swelling will go down and I actually have ankles and go round showing people. I do have one area just below the knee which is always swollen and while it doesn't usually bother me i cannot kneel on it as it's painful if touched.
I do have compression stockings but they don't go over the really swollen bit so I only wear them if walking a long way because eventually they roll down and feel like they're cutting my circulation off.