Anyone with lymphedema, I'm waiting to see a Dr now a... - LSN

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Anyone with lymphedema, I'm waiting to see a Dr now as I believe I started symptoms about 3 years ago. My upper legs look horrible.



3 Replies

Good luck with this, but realise this may be the start of a long struggle if you live in the UK, as our treatment is the 'cinderella' of NHS. If you are not happy with what you are told, always ask for a second opinion. And if you have funds it is always worthwhile taking yourself off to Europe for advice .And belong to the Lymphoedema Support Network: wonderful people.

Hi GypsyTraveler, when you say you’re waiting to see a dr do you mean your GP or a specialist? What makes you think it’s lymphoedema, did you have surgery or cancer which may have started your symptoms? Do lots of research online and take the information with you to your appointment so you’re not going in there without some knowledge.

I have advanced stage primary lipo-Lymphoedema and it took 45 years to get a diagnosis and while there is more information available now than there was 5 years ago it’s still difficult for so many to get their diagnosis and then any treatment/compression depending on what it needed and what your local area is able to provide.

I hope you get your diagnosis one way or the other and then the treatment/compression you need depending on your results. Good luck

Once my GP realised that I had Lymphoedema in my lower legs, and not fluid retention, I was referred to a Specialist Lymphoedema nurse. At the first appointment, for which I had to wait only a couple of weeks, both legs were weeping lymph fluid.

I was examined, given absorbent pads to use for the time being, and was measured for below the knee open-toed compression socks. They came quickly and my legs soon started to reduce in size. I now see the Lymphoedema nurse every 6 months, and measurd for new socks if needed., I don't know how above the knee lymphoedema is treated, but hope it's not long before you see a specialist person.