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Hi all

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.

5 Replies

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  • Sorry to read your having such a tough time, maybe ring the LSN, as they have people there who know about and understand the condition, stay strong xxxx

  • I agree with jennymary it's worth calling the Lymphodema support network, they have a helpline who may be able to advise. I like you have issues with communication between the clinic and my GP. In my case it seems to be at the GP end where the system they use for prescriptions presents them with an enormous list of options for compression garments and they have to translate what the lymphy clinic recommended into a code the chemist can order. My lymphy clinic now include the information the chemists need on the documentation they give me to give to my GP to get the prescription. This makes the GPs life a lot easier. (hope that makes sense).

    You asked what you can do at home? I recommend three things

    1) control your weight so your lymphatic system has less work to do.

    2) Exercise, help your muscles pump that lymph around your body.

    3) Now the nicest bit, whenever you get the chance put our feet up, let gravity help drain the lymph from your feet.

  • Although I have a brilliant lymphoedema nurse, I have also had problems getting the GP to understand the codes from her. There are so many different compression garments out there with so many variations. I would definitely contact LSN as they would be able to help you find another lymphoedema clinic. Yours sound horrendous. Mine couldn't be more helpful. Hood luck with your journey and hope you get sorted very soon x

  • harril86 persist with the clinic and get measured for your socks or tights, which ever they recommend. Ignoring your problem could cause further unwelcome issues for you. Keep your legs well moisturised with a good cream, I personally use Aveeno which is brilliant, also elevate your legs when seated and keep moving as much as you can. Don't accept further cancelations without a good reason, you have a condition that requires treatment now before it gets worse. Put your best foot and face forward and don't let them make you feel uncomfortable, smile and engage in conversation.

  • Dear harril86, like others I would suggest ringing and joining LSN, the number for info and support is 020 7351 4480 and their website is lymphoedema.org

    They have a list of all the support groups that exist as well as this forum and also have a DVD that shows how to care for lower limb lymphoedema.

    I do hope you find a better service than the disappointing one you have at the moment.

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