Has anyone heard of Lipodema? I've had it since the age of around 19 and never knew what it was until I saw a vascular doctor this year. My legs look swollen and hurt to touch. It's between my knees and ankles (I have a line that you get from wearing tight socks). I think it is also slightly in my arms. I've been told there is no cure and hate my very large heavy legs.

like the lady i have swollen ankles and will not wear skirts or anything that would show them off. i find it very embarrassing a few people that i have shown have asked why they are swollen so much but the answer is i dont know why. is there anything i can do please help.

thankyou.

I have had primary lymphoedema for the last 45 years. I was seen and then told nothing could be done. over the years I have only been given diuretics, and boy do I know it if I don't take them. I ahve just cut them down as they cause kidney problems and my feet and legs this evening feel as if they are on fire. I am not as bad as some (my mother for example) but have been trying to get to the lymphoedema clinic at st Georges as ther is absolutely nothing in my area for lower limb lymphoedema and so I have to go to the vascular surgeon and hope that he can sort me something out or refer me onto Prf Mortimer. I don't hold out much hope for an improvement but surely I'm entitled to have whatever treatment is available, MLD, bandaging and support stockings? GPs are notoriously ignorant of the whole thing and when I asked for a referal to a clinic was told I had to see the practice nurse, after waiting three weeks to see her she took one look and sia that she didn't have the expertis to help me. So back to square on again. Three months on I do now have an appointment with a vascular surgeon on 18th August so keep your fingers crossed.

Hi – I am 28 years old and I have primary lymphoedema in both of my legs. My condition first started when I was 19 years old but wasn't diagnosed until I was 21. It is suspected that I have lipodema rather then lymphoedema but the treatment is both the same so it has never really been fully confirmed. I wear compression stockings all the time, I go for regular manual lympathic drainage treatment and reflexology. All these things combined things have helped me control and maintain my swelling. I have set up a group on Facebook called 'Lymphoedema is part of who I am' to bring together young people who have this condition so they can share their issues and concerns….or just to meet other people who have the same condition as them and understand how they feel! Thank you for showing this condition on the TV as we need to raise more awareness so GP's are able to diagnose the condition straight away.

i suffer from lymphodima in my leg i had lymph nodes removed in right leg 4 yeqrs ago and i had the stockings to wear 2 years ago i had my left leg done i had no real problem untill now and i have piting on both shines and swollen legs .i have been taking antibiotics for about 6 months as i keep getting kidney infections now i have thrush is all this connected. the resone for lymph node removals was valvar cancer

My beautiful mum has this condition called lymphoedema in both her feets and arms. She has been seen in the lymphoedema clinic and has be given the thick, hard to get on support/pressure tights/stocking. Sadly this has had very little effect. My mum finds it frustrating to get shoes that actually fit on her feet because of this condition and my beautiful has not owned a pair of boots in years. Earlier this year when most of the country ground to a halt due to snow on the ground my mum never possessed a decent pair of fitting shoes because of the cruel lymphoedema disease. We can send men to the moon but we can't cure this? Amazing sad.

I'm in my late 20's and for about 10 years or so I have had constant swollen ankles and possible swollen legs. It does not hurt at all, but just very rare times , say for instance, i wake up in the morning, my ankle has seized and if i apply pressure it hurts abit. It takes a hour to finally walk on it properly. I have explained all this to several gp's but like alot of people, they have told me to lose weight. I'm only 1/2 stone heavier than my ideal weight for my height, and have lost weight in the past, but this condition as not changed. I can't remember the last time I wore a skirt as I make sure that my legs and ankles are hidden. Is there anything you can advise me on.

Kind Regards

i have lymphodema my legs i have had them for 8 years my right has got large lump where the fluid is and my left leg also has got a lump i have been in hostipal 2 times when i get infections i got worse in 2006 i end up in i.c.u i cant where stocking because i over weight i try to do exercise but i am limited because i can run please help i am in stress mode at all times please help

I had breast cancer 4-5 years ago had my lymth nodes removed, had chemo and radiotherapy I now have ongoing problems one of them being swollen feet and legs with ulcers on both legs. The medical people say its due to my diebetes they also say rest your legs up.They don't have answers.I'm going round in circles chasing my tail. I don't have the answer either,I'm guessing it was all the chemicals i had.

Hi, i have got really bad swollen ankles and feet, i visited the minor injury nurse and she said it was nothing to worry about it is really painful and sometimes find it really difficult to walk. should i see my gp??