Lipedema / Lymphedema

Hi, I was diagnosed with lipo-lymphedema about two months ago. From the very little written about lipidema, I am finding out that people with this condition who have weight loss surgery lose very little weight in their lower body. I'm considering surgery, as it would make dealing with the condition much easier. I am hesitant, however, to take such a big step if the results won't be that great for me. Does anyone here have lipedema in addition to the lymphedema? Any advice will be welcome, thanks. Nan

Nan, I have both Lipidema and Lymphedema and it's helped me a great deal since surgery. My legs are much more manageable. How much weight are you looking to lose and how severe is your lymphedema? Amy

Hi Amy, Thanks for responding to my post. I have to tell you, finding and reading your lymphedema story on line helped me to recognize my problem and find a doctor who would actually listen to me and diagnose it! I'm just over 400 lbs. and 5'3", so there is quite a bit of weight to lose. I've been thinking about surgery for a couple of years, watched friends have success with it, but I haven't been able to make a decision yet. My lymphedema is not too bad - at least my skin is pretty good. I had one bout of cellulitis in the spring, not too bad, fortunately. I'm having a real difficult time with the treatment. I had 4 weeks of CDT with a therapist who unfortunately was not too experienced. I saw quite a difference im my lower legs, but only the lower half, since the bandages were constantly falling down due to the shape of my legs. I had a consultation with a more experienced therapist, and have devised a better wrapping method, which is not perfect. I have not been able to work on the thighs at all. I am waiting for a Circ-Aid legging to help get the lower leg further down, and to make things much easier. Of course, I can't bandage myself, so I am relying on my husband. It is putting stress on both of us, not the most fun thing to deal with as you know! I haven't been fitted for stockings yet, because there seems to be no point until I get the maximum amount of swelling reduction that I can. Well, this got long, and I have more questions for you, so I will save it for another email. Thanks again for responding. Nan

Nan, I'm glad you are going to someone more experienced. I know for myself when I did the therapy it helped a great deal, however after the therapy they continued to swell and they got back up over a few weeks. That is finally what pushed me to have surgery, I could continue to deal with the swelling and the way it was coming back I just thought I'd try anything at this point to get some control. I'm glad I had the surgery, now my legs are much better. I can actually put them up and they stay down for the most part. I don't have to wrap as much, I haven't done much since losing infact, they stay managed with just the compression hose. Any questions just ask anytime. Amy

I was wondering if you can please tell me who performed surgery on you. I am also diagnosed with lipoedema and I heard that liposuction surgery if effective, however, Ii never had opportunity to talk to someone about it...I would really appreciate if you could share more info about surgery and how can I find best surgeon for lipoedema in USA?

Thank you in advance….

Hi Nan - I have a website that you might enjoy taking a look at. The url makes it sound like a jewelry website, but it is way more than that! The jewelry just helps to support the website development and design. the url is http://ladyfrog-vintage-jewelry.com It is a site that will be providing more and more info about lipedema and other chronic pain. Lipedema is sometimes called "Painful Fat disease". I can relate to that name! It isn't a very well studied disorder, and is really at the bottom of the barrel as far as research goes - mostly because at this stage 1 it isn't life threatening. I would like to invite you and anyone else who deals with these issues to come join in the dicussions and topics.

I'm so glad I found this web site!!! I have been dealing with lymphedema on my legs for about 1 and 1/2 years now....and it sucks.I have a pump for my legs, but  sometimes don't use it because I expect it too much from it, namely, to take away all the fluid and make my leg normal. I have one of those garments with the straps, but I have trouble putting the d$%n thing on, plus, it falls down. Lymph massage drainage seems to help, but my insurance will only pay for limited amounts of it.I am a regular visitor ( about every 2 months) to the local wound care center due to the infection/drainage that happens.   I have to walk with a cane, stairs are nearly impossible. I starting thinking about gastric banding surgery couple of years ago, and now since I can barely walk, I must do banding  hoping I will lose weight all over and thus relieve this condition as well as helping with my Type 2 and Sleep Apnea conditions. I am 5'7" and 400lbs. I use to play tennis and be so active, but my quality of life has plummeted the past couple of years. I am single, and thank God my parents are around to help me!! Some of my friends can't handle my not being able to go out and run around as much, so I have felt quite isolated too lately. But I have faith in the universe to pull me through this dark time in my life. Anyway, just wanted to reach out and give my story.