Joint pain

[Shihtzumom]

I’ve had lipodema for nearly 30 years, but just recently I’ve been having more trouble with my knees. They go from under me and feel they could dislocate if I move too much some days, anyone else suffering with the same and any tips on how to help?

[sooze23]

my right knee caused me a lot of pain but I had liposuction 2 months ago on it and no pain since - getting the left leg done in February which is good because noticing it is beginning to get sore as well.

[Shihtzumom in reply to sooze23]

Can you get it done on the NHS?

[Whitesugar in reply to Shihtzumom]

It is helpful to keep your leg muscles as strong as possible to protect your knees. Would you benefit from seeing a physiotherapist to guide you with appropriate exercises? There is information about exercise on the Lipoedema UK website and in their literature.

Liposuction for lipoedema is not available on the NHS.

[Shihtzumom in reply to Whitesugar]

Thanks for answering

[Vicki_hill in reply to sooze23]

Did you pay private for the liposuction?

[sooze23 in reply to Vicki_hill]

no but as I live in a different area from the hospital my local trust had to agree to fund it and they did

[Vicki_hill in reply to sooze23]

That’s such good news. My GP is looking to do this for me. However is unsure where he can send me. Can you tell me where you had it done as I prepared to travel anywhere for the best care on the NHS or privately and my GP is unsure of where he can start. I live in Birmingham. Thanks

[Hidden in reply to Vicki_hill]

Ann Dancey works out of hospitals in Birmingham.

She is a plastic surgeon and very highly skilled working with patients with Lipoedema and Lymphoedema. I met her at a Lipoedema conference and spoke to some of her patients.

Birmgham community healthcare runs a Lymphoedema service which was doing extremely good work the last time I spoke to anyone using it.

Again I met some of the team at conference and I was very impressed with their approach.

Your GP can make an NHS referral to that team via this link ;

bhamcommunity.nhs.uk/patien...

It sounds as if your GP is very supportive. Maybe you could introduce him/ her to the learning modules ?

Wendy

PS I was in Birmingham last week. My home town,

[Vicki_hill in reply to Hidden]

Hello I have already been seen by the lymphoedema service. I received my compression garnments last week. However both the service and my gp have said that I would benefit from the liposuction. However my gp wanted to get a further opinion before trying to apply for funding. If the funding was to be declined I would consider going private but have no idea where to start.

[Hidden in reply to Vicki_hill]

Good, I'm pleased you are getting care.

I'm sorry my reply was unhelpful but my experience of getting an opinion on treatments other than those provided by my Lymphoedema Nurse were made from a referral to St George's by her.

( I had to pay for the first consultation as I don't live in the catchment area.)

I don't think you can apply for funding until you've seen a surgeon which is why I suggested Anne Dancey. I'm sure your GP can make a referral too.

I've just heard that Prof Mortimer's bid for surgery on my secondary lymphoedma arm has been rejected. Can't remember if that's the 3 rd or 4th.

No surprises in that but there isn't a plan B for me. I

[Vicki_hill in reply to Hidden]

Thank you. There’s so much to learn and find out isn’t there? I’m tempted to check out this Anne Dancey. Do you know which hospitals she works from?

[Hidden in reply to Vicki_hill]

Hello,

When she was at conference I thought she worked out of Queen Elizabeth one day a week but I can only find her listed at private clinics now.

See what you come up if you run a search.

Ask your GP for a referral as you’ll need one even for a private referral.

Wendy

[Hidden]

Sorry my reply is belated but I wanted to let you know

that Prof Mortimer from St George's believes that Lipoedema is not " just" an adipose fat problem but presents with other symptoms too.

One that he mentioned at conference was painful knees.

I have severe secondary Lymphoedema complicated by Lipoedema.

I am in my 16 th year of remission from breast cancer so I've had a long time to learn about both conditions.

Prof M diagnosed my Lipoedema about 5 years ago and has since been trying to get funding for surgery on my arm.

I'm not optimistic as 4 bids have been turned down but the latest one underlines the fact that my arm is now so huge it's making my crumbling cervical spine even worse.

Wendy

[Shihtzumom in reply to Hidden]

I’ll keep my fingers crossed for you, thanks for your help

[Dingledaw]

I think I have this. Any tips on how to get diagnosed? I'm in Cardiff.