Just don't know what to do

[alwaystooembarrased]

I am suffering quite badly with my knees at the moment and having battled for over 10 years with GPs telling me I am fat and need to lose weight, have finally been referred to Lymph care which is an NHS run nurse based organisation. The ladies there are lovely but it took 4 weeks to get the first appt where they confirmed I have both lymphedema and lipoedema and measured me for support tights and put me on the waiting list for a machine that will help - that was now 6 weeks ago and i am still waiting for the appt to come through to have the fitting so I cannot wear them yet!

I had an operation in Aug last year to sort out a tear in the cartilage in my right knee which was covered by my private health care (AXA PPP) and on further MRI scans have picked up I have arthritis in both knees and cartilage issues which is causing me huge mobility problems.

The problem I am currently facing is that I cannot move forward to get a knee replacement because of the swelling in my legs. So until I can get the swelling down they will not operate.

I just don't know where to turn anymore as AXA have said they will help me but they need to have a specialist in the field (lipoedema/lymphedema) to refer me to but everything I have found is nursing based or plastic surgery both of which are not considered as specialist consultants.

I am piling on the weight because for over a year since the operation and I still cannot walk properly and my mobility is now around 10% and totally taking over my life.

Can anyone please give me some advice on what to do?

Thanks in advance

X

[Hidden]

St George's, Dr Gordon, London. lipoedema.co.uk, lymphoedema.org.

[alwaystooembarrased in reply to Hidden]

Thanks BienBien x

[Hidden]

Hi I had the same op as you in both knees around 6 years ago at the time they swelled up - *think The Hulk only bigger. It was also incredibly painful from straight after the op where it felt like an elephant sitting on my legs to a year afterwards. I then had one full knee replacement with the other supposed to be 6 weeks after that - I opted out. I was 95kg (UK size 20) then (I'm only 5'3").

Best thing I ever did was adopt the keto way of eating. I joined a Facebook group called Lipeodema Warriors and read the story and advice of the founder Lauren East and followed that. It's taken 3 years ears but now down to 72kg (UK size 12/14).

Keto reduced the inflammation which causes the pain - I was able for the first time in years to run up and down stairs!

After having Lipeodema since puberty I was only officially diagnosed after getting a referral from my GP to a Vascular Surgeon and although he did the Doppler test and lymph x Ray he couldn't diagnose Lipeodema with certainty. So he referred me from Greater Manchester to see Mr Alex Munnock at Ninewells Dundee who diagnosed me as stage 2/3 with arms badly affected as well. Although Mr Munnock said I was a prime candidate for surgery the CCG did not approve it.

I know with having a knee replacement that future replacement is necessary so liposuction would possibly be a waste of time because of this so self management is key for me.

I wear compression most days and joined the Ramblers in November and go on 7/9 mile walks. I have had a few sessions of MLD but it's expensive and I dry brush instead.

Hope this helps x x

[Hidden in reply to Hidden]

Your post really helped me. Thank you