Lipoedema UK
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Angry

Why aredoctors in this country not educated on Lipoedema. I work in the NHS and I’m soo angry that I had to investigate on my own what was wrong with me and find a specialist who could confirm I had Lipoedema. One time I was referred to Orthopedics and was told Dear you have bingo wings. I’m just too angry at the moment to write anything else. God love young girls who have to go through this as there is very little help if any in this country for Lipoedema but if you are a drug addict etc plenty of help.

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I am in complete agreement! I keep asking ''why'' to so many things associated with Lipoedema and Lymphoedema. Just not good enough when one walks into a surgery and has the doctor look you up and down....then ask if you ever thought about going on a diet! When you try to explain why you have legs the size of tree trunks, you can see the complete disbelief. I am tired of trying to explain what Cellulitis is, what it means to have a wound with Lymphorrhea, and to be told that one cannot get any lymph fluid leaking from anywhere above the knee! I had wounds above both knees, and was told I must have something else wrong with me - like heart failure! Does one so much good to hear that, to have one more thing to worry about.

I really hope you find someone who understands what you are going thru, who will help. I am blessed to have found a district nursing team who are willing to learn, who are actually listening to ME, and trying to make things better. What they learn from my treatment, they are able to use on other patients. Dorset has virtually no help for anyone with primary Lymphoedema or Lipoedema.........at least not where I am!

sammy

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agree - took sometime to persuade GP I was not just fat - printed off info and took it to him. I have been to general surgery (turned out bowels were her specialty, then to vascular surgeon who wasn't interested but did suggest that in my research I knew of a surgeon (plastics) in Dundee that I go direct to Mr Munnoch which was great to have someone who knew what they were doing - I am on the RAD diet and hopefully getting legs and buttocks done within the next 18 months to 2 years.

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When you say you are '' getting legs and buttocks done'' - what are they doing to you? Interested to know what other folk are having done. Sadly I am way beyond any of that help now, mostly palliative type care now for me. I have had these diseases for so many years before being diagnosed, no compression etc. I do look after my skin very carefully, strict with cleanliness and use QV wash, and use compression wraps. Very difficult to get around now, as my legs are so heavy....... that's why we need to fight for those who are still to be diagnosed, make sure they get decent treatment and their lives can continue uninterrupted! Wishing you all the best....

sammy

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it is the liposuction one leg and 4 months later is the second then another 4 months for the buttocks

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