Help for a Lipo-Lymphoedema Sufferer

[chezz66]

Good afternoon MicroSurgeon

I was diagnosed with Lipo-Lymphoedema approximately 4 years ago after battling for at least 10 years and watching my mother suffer for decades before that.

I am 47 years of age and used to have legs I could be proud of.

Spent years going to the GP to be told that it was water retention, just obesity, etc. Am sure you’ve heard them all. Eventually took matters into my own hands and went delving through the internet for about 3 weeks to find as much information as I could to determine what I was suffering with. Found the answer – Lymphoedema.

Printed out about an inch’s worth of info and sent to GP who concurred that I had self-diagnosed correct and then promptly referred me to my local Lymphoedema Clinic in Milton Keynes. At the same time, I had already booked to complete a 4-day trek to Maccu Picchu in Peru (which I did do in the end and immensely proud of given the condition). Not sure if my knees have ever been the same since, though.

Then found out via MLD & Compression bandaging that I was actually suffering with bilateral lipoedema and primary lymphoedema. Have tried the compression tights for two years and gave up on them, I’m afraid. They would pinch around my ankles and my knees and be absolutely unbearable to wear.

I continue to have Lymphatic Drainage Massage via a clinic local to me about every 6 months to a year which at least keeps the restlessness and the pain (reasonably) at bay. I have noticed that my arms have now joined the party (I believe that this is partially due to the injections I had to have to do the trek in Peru and partially due to the condition itself).

Add to this the fact that I am also in my 2nd year of menopause and I can feel that my self-esteem is starting to drop.

What I wanted to ask is whether or not your treatment covers both conditions (Lipoedema and Lymphoedema) and how I can go about getting referred.

I would also be interested in the costs of getting this done and whether you are covered by Health Shield who I am a member of via my employer.

Many thanks for your time.

[yally]

Hello

My name is ally age 46.I am from mauritius,I am suffering of the same problem like yours obese swollen ankle etc etc.but l don't follow any treatment I just browse intnet hoping for miracle treatment.

Please contact me on [e-mail]

Thanks

[Rebec]

Hope you get a reply from a Microsurgeon. My worry, in going through the 'knife', is that you can't see what is happening under your skin, if the new channels just created are working well or are about to collapse, and so, one can't be sure of its success. I read about some Japanese surgeons working on a new method altogether. It's something to do about a transplant! I don't quite understand what it might involve, but I would, in my case, try to alleviate the problem by using methods that can be applied externally. Wishing you good luck in getting the finding the right solution.

[Blunderwoman in reply to Rebec]

Probably Lymph Node Transplant. The Italians are also into this.

[Rebec in reply to Blunderwoman]

It seems to me a most delicate procedure and I wonder how successful it could be.

[Blunderwoman]

Hello chezz66, I have Lipo-lymphoedema as well. Diagnosed just before I was 50. I have MLD every 6 weeks. I think 6 monthly is a bit far between? Has your Therapist taught you SLD you can do yourself? (Simple Lymphatic Drainage) I have been fitted with shorts from under bust to knee, and Jobst stockings in a 3. I also have Lipoedema of the arms, and am fitted with stage 2 arm sleeves. I feel like a tinned sardine at times! Both my mother and Aunt had this too! Although they were never diagnosed. A good site is tillysmidt.nl/LIPEDEMA%20%2... I have also joined a facebook page for Lipoedema ladies UK.

[jinger]

I have Jobst made to measure class 2 stockings. I can't wear 'off the shelf' ones as they pinch and dig in at the front of my ankles. My Jobst ones have a 't-heel' which gives more material and is shaped differently at the front of my ankle and I suffer from no more pinching and digging unless they slip down

[Hidden]

Hi Chezz66. I'm new on LSN, and just found your post. It's 4 years old, but I hope you still come here? It's very interesting reading, as I'd never heard of this condition, but I'm glad I have, as it sounds sooo similar to mine! However, I believe I may have had lipoedema for many years - treated for 'swollen ankles' since a teenager - before being diagnosed with lymphoedema a few months ago! I looked this up on the NHS Choices site, and it all just fell into place! Yet another trip to my Doctor may be necessary, methinks.....

Thankyou for the info, and good luck.