I have had Lymphodema for the past 13 years. The lymphodema affects my lower limbs (in particular my right foot and ankle). I was officially diagnosed about 6 years ago. I was referred to a lymphodema clinic about 2 years ago and would go for 6 monthly check ups. This was a horrible experience for a number of reasons:
I felt like they were unsure of how to handle me as I perhaps did not fit into their typical patient mould. Most other patients were very advanced and required wheelchairs and walking aids.
The nurses were very curt and in my opinion not particularly helpful - the advice was always the same (no variation) On one occasion I was made to feel quite vain because I asked for a skin coloured compression stocking (even though it was previously offered to me!). I never did actually get it. I would be told my shoes were incorrect but would never be given advice on what to wear?
There was a huge issue with communication between them and my doctors surgery (so not all the clinics fault) which meant correspondence would take ages and so I would never get the full benefit of wearing the compression stocking. There as never really any improvement in my condition.
I haven't had an appointment with them for months as they make appointments with me and then cancel them, I can never get through.
I'm unsure of what to do now. I think they are the only clinic serving my area (East London). My situation at the moment is I have no compression stockings that fit (I have put weight on - my own fault which I think has contributed to this) Do I persist with the clinic? Do I have other treatment options? What can I do at home?
I admit I sometimes shy away and try to ignore my lymphodema as it often gets me down. i realise this is not wise.