Diagnosis

[Helenbolland]

How can I get diagnosed? I believe I have the symptoms but my GP has never heard of lipoedema and just dismisses me. I live in Scotland.

[Whitesugar]

It's a tough one. Sometimes a different GP in the Practice will be more receptive. I assume you took some information with you? Have you joined Lipoedema UK? They have a GP information pack and special postcards that are short enough to grab a GPs attention highlighting the symptoms and informing about the learning module on Lipoedema endorsed by the Royal College of GPs. Another tack maybe to make an appointment with one of the senior practice nurses and educate them about the condition and your concerns. They can also complete the learning module. If you really can't get anywhere speak to the Practice Manager. Lipoedema is explained on the NHS website so there is no reason for Health Professionals denying it exists. Good luck.

[sooze23 in reply to Whitesugar]

I also live in Scotland and just kept giving my GP information - I printed off including pictures and he eventually agreed with me. I got him to refer me to Mr Munoch Dundee and now have an appointment next month

[Helenbolland in reply to sooze23]

That's brilliant. Would you be able to let me know what he's like and what treatments he has offered?

[sooze23 in reply to Helenbolland]

will do

[Lizdeans1 in reply to sooze23]

I just had a hip replacement and although the surgery was great my leg is much larger than the other .... My physio suggested lipoedema , when I have been going to the GP for 20 years about my legs and kept getting told to go away and lose weight when I was a size 10 on top . I'm in Glasgow.

[sooze23 in reply to sooze23]

I met Mr Munnoch on Wednesday - it was so good to be confirmed as classic lipoedema which sounds weird but after all the years of raised eyebrows etc it was good to be believed.

I am to be fitted with compression garments and follow the RAD diet (Rare Adipose Disorder) and go back in 6months. Wearing the garments will prepare me for operation (3 in total) but I have to lose weight so it is obvious what is the abnormal fat. The diet will not just help lose weight but should slow down any further fat growth.

Hope that helps. When and where is the Edinburgh event?

[Hidden in reply to sooze23]

That's good to hear. Jealous really that you can have surgery eventually as my bids from St George's have been denied.

Good Luck !

[KillerQueen1971]

Hi Helen , I've got symptoms, doctor has referred me yesterday, recently had a case of stubborn cellulitis, tho some still remains in my right leg. Great gran and a great aunt both had/have lipoedema/lympoedema. I would say change GP , tho will your new doctor know about it, or go back to your current GP, but go armed with printouts from the internet.