Help with lipodema

[Yvonne0865]

Hi Iam Yvonne I’ve just been diagnosed with lipodema my legs have been like this since I was about 12 am now 52 I would be grateful for any information regarding Liposuction and any other information would be great thanks Yvonne

[roxgalore]

Hello Yvonne,

My situation is similar to yours. My diagnosis came last year after being sent to a vascular specialist by my doctor as they said I had very bad varicose veins. The specialist told me I had Lipoedema and not varicose veins! I tried to talk to my doctor about the condition but they said they could not help me! I felt upset and let down by the system, as I had been suffering this condition for years and no-one had told me! I didn't know which way to turn. After researching as much as I could I subscribed to Lipoedema UK who sent out a very good information pack.

As I had been suffering some significant pain in my lower legs I found a MLD Therapist on mlduk.org.uk who is brilliant. After the initial MLD session the pain went. I was shown how to carry out basic LD which I carry out every day. I was also given a few other tips which included getting a circulation booster.

I did not want to go down the Liposuction route as it is costly and do not fancy the procedure also, from what I have read it is not a permanent solution. It took me a while but I have come to terms with knowing that I cannot rid myself of this chronic disorder so as long as I can help to stop the disorder from taking a further hold and more importantly live a reasonable pain free existence I will continue doing what I am doing. What other choice is there! In my experience I am afraid you cannot rely on any assistance from your doctor even though the NHS website tells you to see your doctor!. I do hope my story will help you.

[Yvonne0865 in reply to roxgalore]

Thanks for replying I was at clinic today this was my first visit after being diagnosed my legs have been like this from the age of 12/13 and I was always told that was where my weight went and I just had fat legs it’s actually good to know there is a reason my legs are fat I got measured for compression leggings and have to go for massage Iam going to look into liposuction but will see how I go with the compression it is actually quite scary the amount of ladies that have lipodema and there will also be lots more who were like myself and didn’t know anything about this condition and just think they have fat legs take care Yvonne

[Davida1998 in reply to roxgalore]

Don’t want to put a damper on you getting compression stockings. Do you work? If you do you might find they make you far too hot as I only lasted a few days and had to give up as O couldn’t tolerate them . Good Luck x

[Yvonne0865 in reply to Davida1998]

Hi I have heard this and as Iam going through the menopause it will be worse due to hot flushes but going to try as if I can’t tolerate them i won’t be considered for surgery as you have to wear them afterward fingers crossed thanks for your reply xx

[Giwise in reply to Yvonne0865]

Hi....I was diagnoise in 1998 by Prof Mortimer at St Georges. I have worn compression ever since come rain and come shine.....if you can try and grit your teeth they will help. It may be helpful if you can get several class's of compression stockings so for instance when I can't tolerate my class 3s I can wear class 1 and at least I am getting some compression which is much better than none! When they are really bad I also wear class 1 in bed and the difference in the morning is really good! Do try and percivere with them they will be very helpful in the long run. I have just had 4 ops of liposuction with Anne Dancey and the difference is amazing! BUT you will have to wear the compression 24/7 at first so the more you try now the better they will be eventually .......short term 'pain' for long term gain!! Goor luck!

[Yvonne0865 in reply to Giwise]

Thanks for your reply it was very helpful Iam definitely going to try my best to wear them they are starting me off on class 1 and if Iam ok with them they will move me too class 2 that’s great news about your surgery and the results how was the healing process and does she offer payment plans xx

[Giwise in reply to Yvonne0865]

Hi Yvonne0865, really glad to hear you are going to give it a try! My healing process is ongoing, as you can imagine 4 operations in one year is a little gruelling by I do recover well and now it is just a case of massage and exercise to help with recovery. My legs still get odd sensations and also some is still numb but it really takes 9/12 months after the last op to see the results in full. At the moment I couldn't be more happy - I have never had legs this thin before and also no pain and the heaviness is what I really don't miss! As for the cost, yes it is expensive, but what cost health! There is a company 'attached' to Spire Hospitals think it's called Zebra ....it's on the Spire website...which gives 0% credit and I also funded myself using 0% credit cards ....so still paying off for the next few years.....but for me sooooo worth it!! It will be my holidays for the next few years! If you want any further info, please ask! Good Luck and take care of those legs! G

[Yvonne0865 in reply to Giwise]

Thanks surgery is definitely something I would want to consider I’ve always hated by big heavy legs what a feeling it must be to go and buy boots or skinny jeans I will look into all options good luck with the rest of ur recovery and thanks again for ur help xx

[Eyes2blue]

Thank goodnesd someone who has suffered as I have for over 40 years now! I feel so alone, nobody understands my pain and I have suffered in silence!