Has anyone heard of Lipedema?

[firstofallimadelight]

I went to my doctors as I suspected I might have it. Gp had never heard of it and said it sounds like cellulite.
i wanted to know as i have chronic back pain and had read that it could be linked to back problems.
Is it actually a thing and does anyone know any real life experiences of it?

It's definitely a thing. See the NHS info below. Sounds like you met a very dismissive GP, so common and so frustrating.

www.nhs.uk/conditions/lipoedema/

My friend has it. She too had many dismissive GPs tell her she was a lazy fattie until a locum GP queried. It is very misunderstood.

I suspect I have this, and think my Grandma did too. I haven’t spoken to a dr about it as I don’t want to waste an appointment to be fobbed off by a dr who just tells me to lose weight…

I’ve always carried extra weight on my legs - my dad described them as tree trunks as there’s just no shape to them. When I do lose weight, I can’t lose it from my legs.

My mother has it. It is painful, not 'just fat'. And is not well understood by the medical profession at all.
My siblings are profoundly unsympathetic and see her as having brought her disability on herself. Yes, maintaining a healthy weight would have helped her, except it is not so easy. Hers got worse with each child and then with menopause. She has lost 4 stone in the last year, but it goes from her upper body, not her limbs.

Yeah, it’s definitely a real thing — not just cellulite like some doctors think. It’s when fat builds up in certain areas, usually the legs or arms, and it can be really painful or feel heavy. A lot of people say it doesn’t go away even with diet or exercise, which is super frustrating. It’s not very well known, so some GPs miss it, but a specialist might be able to tell you more or check properly.

It’s definitely a thing, your GP can’t have paid much attention in college/work/life!

Thank you! I went with a small amount of knowledge but assumed the doctor would have heard of it and he hadn’t. He googled it saw the description and said well it’s another word for cellulite! I felt like an idiot. Clearly I need to arm myself with more knowledge but if dr doesn’t know what it is they can’t really diagnose it. I only really wanted to know if my back pain is connected.

Yes I get mild pain in thighs and more severe pain in glutes

I use to have no noticeable fat on stomach/waist but menopause has created a tummy but still not comparable to my legs/hips

My friend is a lipodema specialist nurse in the NHS so it definitely exists!!

There was a girl on Love Island a few years ago that had it

Are you sure she's not a Lymphoedema Nurse Specialist?

Yep I have it in my legs and arms. For years I was told it’s because I’m overweight but it’s not because I’m underweight. The nhs are bloody useless with this condition. Mine doesn’t affect my back but it definitely affects my hips .

Yes I think that’s when I first heard of it. I suspect i have it - no pain but visually I think I fit the bill. No pain so suspect early stages. I’ve lost a bit of weight and been doing more gym work on my legs - they do look slightly better but still disproportionate.

You may not be surprised to read that if affects women much more than men

Shauna I think her name is. But I recall she had a lot of surgery and did the ozempic and it looks a hell of a lot better

@childofthe607080s very very rare for men to have it

Yes, but in this day and age the GP could just google it if they didn’t know what it is.

He did google it and said ‘oh yes it’s another word for cellulite’ he said it so confidently that I doubted myself, made my apologies and left.

I can't believe a GP hadn't heard of it!

I think I might have stage 1 Lipoedema. It's hard to tell as I have Dercum's disease, and painful fat, painful lipomas and swelling are some of the main symptoms.

It does go hand in hand with Dercum's, and the symptoms overlap.

You need a second opinion.

Lipoedema and lymphoedema are not the same thing although they can co-exist in the same patient, because lipoedema predisposes people to lymphoedema. My mum has both, but the lymphoedema is only in one leg.

Lipoedema is almost exclusively a female condition, it appears to be hormonally driven and has a genetic relationship. Lymphoedema is caused by blockage of the lymphatic drainage and can be caused by things like surgical damage.

The fact that it is mostly a female condition probably explains why it is so poorly understood, given that historically the medical profession gives no shits about women's health.

@firstofallimadelight I am not 100% sure how my mum got diagnosed but she was referred to a specialist somewhere. The NHS has provided her with compression support and physio but has never really addressed the mental health impacts. There is a growing body of evidence that low dose GLP-1 agonists can help, but it is off label use so not much hope of getting it on the NHS. Mum would qualify but at nearly 82, she has given up. 😥

Yes I have it. I flew to Germany twice for treatment. I really recommend the Facebook group Global Lipoedema Awareness Surgeries/Surgeons

And Lipoedema UK https://lipoedema.co.uk

I don’t think many GP’s really know. I have had a few correct me - telling me it’s Lymphodema when I have spoken about it. And I have had to explain it to them.

Doctors in the UK are an absolute joke ! GPs even more so as they seem to struggle to diagnose anything over a cold or chest infection.

I very much have lipoedema. Despite loosing 8 stones, my legs remain massive. There is several things you can do, from massage, compression tights to anti inflammatory diet unless you are in very advanced stage. There are plenty of people who talk about solutions and help on tik tok and Instagram

So sorry you have been through this. It absolutely is a thing! Follow https://www.instagram.com/kaztalks?igsh=MWhsdWV5aXQ2YjExeA== she is great. Also if you want to go down the surgery route follow https://www.instagram.com/dr.puneetgupta?igsh=MXZobmE3bnhpMGc2Ng==
Hope this helps. Feel free to PM me xx

I also have lipoedema and flew to Germany for the surgery. Agree with the poster above lipoedema UK and the Global Facebook group are the best there are also loads of groups for conservative treatment. Lots of women are also having success with the GLP1 jab as well.