I have been diagnosed for a year no help support from my gp, can anyone offer anyone offer suggested what too do please

I have been dignosed with lyphodema only for a year, after a very bad incident of cellulitis which I was hospitalised. I was lucky enough offered private appointment through my work, who dignosed with lyphodema in both of my legs. I was given a pair of stockings told too loose weight, exercise and any problems see my gp. The last few months I have had alot swelling & in pain went too see my gp who told me same thing , I asked about seeing lyphodema nurse I was told only if I was reconvening from cancer. I live in hull if anyone can offer any help please. I only just found this page a few days ago alread, Found it very helpful, as I have felt very alone & upset about my condition.

12 Replies

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  • Hi Sarah

    I can't advise you as I was only diagnosed yesterday but I just wanted to say that I understand where you're coming from as my doctor has been really unhelpful and it's only because I pushed for a referral somewhere else that I got a diagnosis at all.

    I've just been told to wear compression stockings and given a leaflet (which I've not had time to read yet).

    There doesn't seem to be much understanding, even in the medical community, so I just wanted to say I understand, even if that doesn't really help.

  • Hi Sarahj38 - we are trying to find a clinic in your area and will get back to you - if need be you may need to ask for an out of area referral from your GP. why not visit the LSN website and have a read about what you can do to manage your condition better.

  • please can you find me some help ive had lymphodema for 5 years now and i have had no help whats so ever my doctor said there is nothing she can do i live in sandwich kent thankyou

  • Hi Sarah, sorry to hear that you are struggling to get access to the right kind of help. Sometimes your health centre nurse is more useful than your GP so that is an avenue worth exploring.

    From my own experience, I get a lot of pain when I overdo things, if I am particularly tired or cold. I think it is my bodies way of telling me to slow down. Ask for painkillers and try and find a balance in what you do, which might help.

    You don't say what your job is or what it entails. It may be worth you asking for an occupational health referral as some aspects of your job may be able to be adapted to help you manage your condition better.

    Good luck,

    Linda

  • I've had lymphoedema for 6 years, caused by breast cancer. Macmillan nurses give me advise and measure me for sleeves at my local hospice. I understand you haven't had cancer, but I wonder if you got in touch with Macmillan if they would help? Worth a try.

  • Thanks you any ideas is worth A try, at the moment I'm getting very upset by the lack of support x

  • Is there another GP in your practice who might refer you to a specialist facility more locally? It is not good that your GP seemed so short of ideas to help you. Good luck and I am sure LSN will try to get you a suitable place to get help.

  • Hi Sarah

    my doctor doese not know alot about it . but l go to the mcmillan unit at Halifax west Yorkshie and they are brilliant. l am sure if you rang them they would help.

  • Hi Sarah, GP's i'm afraid don't know very much, you really need to be referred to a specialist in the field, I have had LE since the age of 19 (i am now 64) i'm sorry to say it gets no better, bjut there is a lot of support out there, hyou just have to find it, there is a support group on facebook called (Lymphedema Support Group ) you could apply to be a member, it's members are all over the world, and they do give you information for a more comfortable life living with this. xxxx hope this was helpful neer give up

  • hi sarah

    change your gp!

    none of them are likely to be experts, but that doesn't mean they have to be obstructive

    the easiest thing to do is just book in to see someone else in the practice & work your way down the list till you find one who's also a human being

    you don't have to give a reason for seeing someone else - if you're also unlucky enough to have the old fashioned kind of reception staff who think they can order you around & ask intrusive questions, change practice all together

    i'm amazed with what people will put up with from gp's - they're being paid to help, & too pool their medical knowledge with your knowledge about your body, not boss you around!

    (just for the record, everyone who works at the practice i go to is fab, so things tend to mostly work v well altho i do have to tell them what i need for lymphoedema by passing on the info i get from the specialist nurses - i could let them write to each other but i've got ears & a mouth so no need!)

  • if anyone in the North of England / Scotland is interested in trying the Lympha Press please let me know. We are getting there is being able to offer the product across the country but it is taking time as there are only so many hours in the day! Too often secondary lymphoedema clinics turn away patients with primary lymphoedema - it is a nonsense with funding always the excuse - the treatment protocols are the same; it makes my blood boil when i hear this so often. Excuse me whilst I step down from my soap box! NNE naomi@compressiontherapyuk.com

  • Bed,Bath and beyond sells stocking that look like tights and are use to keep the body tight but comfortable

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