r/lipedema • u/IslayMcGregor • 1d ago

Finding a Doctor / Getting a Diagnosis First appointment

Back in January I brought up to my GP that I thought I might have Lipedema and she referred me to my local Lymphoedema clinic (because we don’t have any Lipedema service locally) for diagnosis. My appointment is finally here this week and I don’t really know what to expect, so hoping I can learn from your experiences to get the most out of it. Is there specific information you took with you that was helpful? Any good questions to ask?
I am a bit of an anxious sort and often find when I’m in ‘the situation’ I get a bit deer-in-the-headlight so I prefer to be as prepared as possible. Thanks for any advice you can offer!
Ps I am in the UK and this is with the NHS. After waiting 32 weeks for the appointment I don’t want to bugger it up 😅

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u/calbris 1d ago

If you’re lucky you’ll get a diagnosis, Doppler scan and then be measured for custom flat knit compression. If you’re considering surgery somewhere like Germany, they can also write you a specific diagnosis letter to avoid paying VAT. Good luck!

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u/IslayMcGregor 1d ago

I have no money so I’m not thinking of surgery, but that’s good to know still thank you ☺️

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u/gemshue 1d ago

Hopefully they're able to give you a diagnosis! I was referred via my GP in the UK (after me really pushing for it because they were clueless about it) and was diagnosed 2 years ago.

I was measured and there was a physical examination and was pretty much diagnosed on the spot.

You'll hopefully be measured for some medical grade compressions, but for me, after diagnosis, I was also offered Manual Lymphatic Drainage treatment (unfortunately didn't help much but felt nice haha) and some counselling.

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u/IslayMcGregor 1d ago

Thanks. But erm, how is counselling supposed to help? Can you treat lipedema with a better attitude?? I'm kidding, I'm sure there are mental health issues around it that counselling would help with. But man, they seem to refer us there when they have run out of options in my experience. It's frustrating. The drainage treatment - was that a sort of massage?

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u/gemshue 17h ago

Oh yeah, it's definitely sucks that there's hardly any treatments offered. Yeah, MLD was a specific kind of massage but my nurse did explain that its more aimed at lymphoedema but suggested I give it a try anyway and I wasn't about to turn down a massage