Before and After pics of legs

The first time I heard lymphedema was from my GYN, years ago. My WLS was mildly knowledgeable about it, he was at the same hospital (Ohio State Medical) as the doctor who I finally sought out for help with the lymphedema...a vascular surgeon who got me a pump, and suggested MLD from a physical therapist...he NEVER mentioned lipedema...a friend who I met on here and/or a yahoo group had lipedema and of course it sounded like what I had also. When I moved to Miami 5 years ago I saw a lymph specialist Dr. McDonald and he told me first thing...you have lipedema and lymphedema then asked if my WLS had told me surgery would only help me lose weight above the waist...well of course he didn't tell me that...but honestly the weight loss above the waist has at least reduced the pressure on the lymph system...and the LE is better managed....the lipedema...ah well...who knows.

Lipedema often develops into lymphadema...it is good to know that your lymph specialist in Miami told you that WLS may not help reduce the size of your legs....this is something I am contemplating as I am apprx  225 pounds and worry about proceeding with weight loss surgery and then being lopsided....I am fat now but at least I am curvy all over and do not look odd.....my legs though just get worse and worse so this worries me.  I have not been wearing compression which I know I should but am just so uncomfortable in them.  I wish drs at least knew what this was and had better ideas on how to tx it (I also received manual lypmh drainage which was helpful but only 8 sessions).  The therapist was wonderful though and very knowledgeable.  Thank you so much for sharing your experience....it has been difficult locating info on lymphadema/lipedema much less with weight loss surgery.

I have recently found several websites and FB groups with more information about lipedema. I posted about them since June is Lipedema Awareness Month born2lbfat.com

Hi, just wondered what type of weight loss surgery you have had. I am 57 always had large legs but put this down to stopping sports and vasically got on with it.

Until my doctor noticed my ankles once when visisting her in a dress, then she sent me for tests etc and diagnosed lipodema, ok now we have a name for my large legs and batwing arms.

I had some lyposuction in the buttocks,thighs,stomach and had the fat cut off my arms, but that has all started to return .

Well done for putting the photos on and would be grateful as new member to know how you did it.

I had RNY gastric bypass. I've also had skin removed from my arms twice, and they are back to the way were...still big.

Hi Sarah,  my name is Sara, too :)  

I'm so happy for you that you not only had an amazing result but also finally got the correct diagnosis.   I was diagnosed with Stage 3 Lipedema w/ Secondary Lymphedema in August of 2011 and I'm trying to spread the word, too.   I had to travel 10 hours to see the right specialist, no local doctors had heard of it.   It's very frustrating how few in the medical field have knowledge of it, especially since it was diagnosed at Mayo Clinic in the 40's.    

I cried the day I was diagnosed because it was such a relief to learn that it wasn't my fault that my legs were so ugly.  It's a heartbreaking, challenging, painful disorder to live with.   The physical pain any time I do even a small activity is a nightmare. The mental anguish of not being able to participate in so many of life's pleasures is painful, too.  Being misdiagnosed and treated by rude medical staff isn't fun either. 

Learning more about this and finding others out in the world who live with it makes us all feel less alone, even though of course I wouldn't wish this on anyone.   If any of you have daughters it's important to realize that they don't have to be big to have this.   My daughter went with me to my appointment and she (doc) said that my daughter has the very beginning signs of it so hopefully she'll be able to prevent it from getting as bad as mine has.   That alone made me cry at the thought of it!   My daughter is being diligent about wearing compression garments already in her 20's to prevent worsening.  

I can't find any that I can wear, they are way too painful for me to put on and I bruise horribly with each attempt.    I have a generalized weakened connective tissue disorder of some kind that complicates it for me (causing a long list of other issues and contributes to the worsening Lipedema).  I don't know how anyone could get those stockings on if they have even half the pain I do, it is just impossible....and I"m pretty tough with pain because I have MS and other issues as well.  It's frustrating that they don't make them bigger than they do, I've tried to get them at max size which is way bigger than the charts say I should get and I still can't get them on.    I've had to start wrapping my entire legs in ace bandages (so hard) if I need to go anywhere.  

I'm so scared that this is as good as it will get but I can't give up hope.   I am hoping to get better and get back to work as a nurse so I can spread the word in my work, too.  Hopefully more education to all will bring more hope and better treatments in the future.   Thank you for your posts, I know they are old and not sure if you're still around but I hope you're doing well.  

Hugs to all going through this! 

Sara you forgot your H. 

 

You touched on two things I relate too very much, the relief of finally knowing it's now our fault, then the realization that if it's not our fault that also means there isn't much we can do to change it. And with that changing it, yes early diagnosis would have made life much easier, instead I was just deemed "fat" for so many years and just gained gained gained to a point with the lymphedema, etc a lot of damage is not reversible at this point. I wish your daughter the best with early maintenance. While I can wear compression, not for very long, I notice the pinching etc makes me not able to wear them as long as I once did.

 Hello:  I have had bilateral lower leg lymphedema since I was 13.    I had been diagnosed with Juvenile Rheumatoid Arthritis and then the swelling started.  I was not overweight then.  I have been wearing compression stockings since then (I am 57).   Have you looked into decompressive therapy?  http://www.lymphnet.org/  
It is a very gently done special massage technique with bandaging or compression garments afterwards.  It may provide some relief to you.
I have a massage therapist friend who has done this for me in the past.  Think it is time to start again.
Good luck and I am thinking of you.

Yes, I've had mld many times, that is why my legs are so much better now...and I keep them that way by wearing daily compression garments...Elvarex by Jobst.

RE:  compression stockings--Sigvaris has thin, comfy ones with cotton--good for hot, humid climates.
Ames-Walker has their own brand, heavier weight with cotton, also comfortable.