Lymphedema or bad veins?

[luv2bingo]

Hello,

I am new here and am at my wit's end with my so called lymphedema problem. I am starting to wonder if it is just bad veins in my legs or something.

A little background about me and my swelling.
I have had problems with swelling in my feet and ankles for probably 15 or so years. But, up until two or three years ago, it had gotten so bad that I went to the doctor several times in a short amount of time and she kept trying to help by giving me different water pills that never worked, but stressed out my kidneys. Finally she just said you have lymphedema and sent me to PT for it. I went along with it and then got frustrated and quit because it was way too involved and I just did not want to deal with the bandaging, massaging, etc. So, I started to use the therapy pool and it felt pretty good, but I didn't keep it up.

I just had my second surgery for a pituitary tumor and had one four years ago. I did not have lymphedema four years ago. It did not show up really bad until about a year after my hysterectomy which was three years ago. My doctor asked me before my most recent pit. tumor surgery, where caused the lymphedema? I said I have been told so many things and noone has been able to pinpoint it exactly.

So, here I am and found this wonderful site needing to find a special doctor that can help me more with this lymphedema affliction. I need to find out what caused it and also if maybe it is just bad veins in my legs or something.
What is so weird is last year I had a coritsone shot in my right knee and my swelling had practically dissappeared. Hmmm...what does that mean?

Thanks for any and all replies:)

Judy

[Cassie]

Hi, Judy,
I'm afraid I don't know the answers to any of your questions, but I just wanted to say I hear you and I'm sorry you're having such a struggle with it. My lymphedema is in my hand, arm and chest. The main thing I do know about lymphedema is that it is VERY involved, and that can sure be discouraging. Unfortunately, with this condition SO MUCH is up to us, not to the doctors. Our best help is a well-qualified lymphedema therapist, but even with them the point is to teach US to do the massage and bandaging that will keep us well. It's a lot to handle, one of those conditions (like diabetes) that takes a lot of time to learn about and a lot of time and effort on our parts to keep in control.

What's hard is finding the encouragement you need to keep at it. These boards can help, and you might be able to find a face-to-face support group in your area too. Do you have anyone who can go to the therapist with you and learn along with you, so they can help out from time to time?

Sorry I can't be of more help, but I'm rooting for you to find the help and encouragement you need real soon.

All best,
Cassie