I hate Lipedema

Today is the six month anniversary of my surgery.  I'm pleased with my 100+ lb. loss, but not the progress of my legs.  I know, lots of people on Lip and LE support groups warned that most of the weight loss would be in the top half, but I tried to be optimistic.  When I first looked into having surgery, my LE doctor said that she felt I had plenty of plain ole' adipose tissue in my legs, and that I should lose there.  Well, yesterday I went to see her.  She was pleased with the weight loss, and I have gone down in all my leg measurements.  My left thigh went down  five inches.  She did admit that we will just have to wait and see how much progress I make.  It is just really frustrating to have lost so much, to have clothes baggy from the belly up, and not be able to move down one size in pants due to these darned legs!  Now when I look down, instead of seeing my belly, I see my thighs sticking out, so that makes me more aware of it as well.

Thanks for listening to me whine!

Nancy

Nancy, Great Job! My Dr. said as the fat goes so will the fluid. I am right behind you 11/05/09. I too am much smaller on the top but we had to start somewhere. We will get there we just need to be patient I'm finding I'm more shapely as I lose after RNY than with the liquid diets. Remember we didn't gain the weight overnite and it's been there awhile so our body has to hunt and destroy and expel the fat and fluid. It's all in the process.. My left lower leg is bigger than the right and the right thigh is bigger than the left . The important thing is if you feel better and can function better. I still get tired so need to pace myself but I'm 100% better than I was 6 mo.s ago and am amazed everyday at how my body is changing. Make sure you get enough protein and enough fluids to wash the waste out or it just settles somewhere else. I'm glad we have this support to vent this is life changing and no one knows how it is unless they are experiencing the same things. Miss Jean

Your posts are helpful....I am pursuing gastric bypass and have asked several drs about lipedema and they all have no idea of what I am taking about.  I also have concerns about if my legs (and arms) will reduce post surgery (i have lipedema in both now).  My weight is not super high and I am exercising and am hoping this will help.  I do not expect to get small but do not want to be lopsided either.  I actually am pretty curvy and mostly in proportion although my butt and thighs are BIG.  I keep trying to access more info on lipedema and post surgery and it is very limited.

I wish yon well on your bypass journey. I can tell you from my experience I am amazed at how  I am shrinking.I am becoming well proportioned. I had very saggy arms and huge thighs but postop bypass they are all shrinking and getting wrinkly. My Dr. suggested that when I shower to  raise my arms above my head and take the washcloth and stroke my arms from the wrist down to my chest to help the lymph flow so my arms shrink more. I lost 3 inches off my thighs in a month and an inch from each ankle. The Dr. said my left  leg may never get equal to the right but we will see. I have hardly any butt anymore and my belly apron is only skin now and my hip bones stick out. I had my bypass 11/09 and have lost 70lb and gone from sz. 26 to 14/16 depending on the cut and style. My lymph Dr. was encouraging and supportive of having the bypass then to havea  tummy tuck and arms done.  I was shocked he would support further surgery.

Thank you so much Ms Jean for your reply.  You are literally one of the few people who has had gastric bypass who had lipedema I have met. I KNOW there are many of us out there but it is frustrating talking with drs and they have never heard of it. I developed this in the past 5 years (I am 38 and am in a size 20).  My dr had never heard, of lipedema nor my gynecologist nor the dr I met to do the H&P at the baritrics center.  I did manual lymph drainage a year ago and the PT was very helpful but more encouraging to have liposuction than to have gastric bypass.  I felt that, as long as I have the way excess weight, liposuction would be pointless as i would just regain.  I am thrilled to hear that you are losing weight in your legs and will try the lymph flow idea in the shower.  I have not been compliant with wearing compression stockings as they are so uncomfortable.  My lipedema is down to my knees.

I hope it may be okay if I occasionally ask you questions.  I have prayed about having the surgery and feel that this is what I need to do.  I am back into my exercise routine and losing weight on my own right now (it was suggested that we lose 5% of weight prior to surgery.....I am thinking I will have surgery in late fall but that is just a guess....I need to see dietician and dr for 3 months then the surgeon).  I am thrilled to know that you are not lopsided......this is a fear of mine.  I know my legs will probably look pretty bad even with weight loss and I am not expecting to be thin, but I want to remain as active as possible and to be able to enjoy my life.

You give me hope.  :)

Jennifer 

Jennifer, So good to hear from you. I just ordered another pair of compression pantihose 30-40 I like. They are made by MEDIC . They are $100.00 a pair and I have to get new ones every 2 mo. because of the weight loss They are not as heavy and thick as Jobst and JUNO. I do have to be careful with them. They have more give and look like regular hose. Also I do water  exerecises when I can. I can do more in the water than on land and my Dr. encourages it. This morning I saw  the chronic rash on my shins is almost totally gone except for the scaring but that too is fading.I understand about the Dr.s lack of knowlege. I went to the rheumatologist this afternoon and I had to explain to him my pain and I knew more about pain medication and supplements than he did.  I wish I could find some patient confernce about Lymphedema I would be intersted in going. I do go to the Obesityhelp Conferences and find them very helpful and have made lifelong friends from them.I've learned not to be depressed but to take each day as it comes. Today my energy is down because I had a very emotionally and physically exhausting day at work yesterday. So I have layed low and only done what absolutely needs to be done and stayed elevsted when I can. Tomorrow will be better. Keep your chin up. I've lerned things happen when the time is right if you keep the faith and follow the path.

Hey MIss Jean,

Thanks for your message. I hope it would be okay to add you on as friend on here. I do not come on every day but plan on possibly being on more often once my surgery occurs.   I will look up the site your buy your compression stockings from.  My PT is also suggesting some other options as well. 

I need to try swimming....the gym I go to has a small pool and I used to love to swim but getting in the bathing suit is another story!  It is nice to know that the obesity help conferences have been enjoyable and that may be something I think about attending.  The weight loss surgery world is a whole nother world and a nice one.  During my psych eval last week, the psychologist was very nice and said that I was making a good decision.  There are a lot of judgers out there and it was nice to hear positivity instead.

I understand about having tough work days and needing to lay low sometimes. What type of work do you do?

Thanks again for sharing youe experiences!  It is very helpful to me. 

Jennifer

That's great the psych eval went well. I'm sure you could wear a Tshirt and shorts in the pool. Several of the gals I have exercise with wear that. I find I can do more in the pool than on land. I am a pediatric nurse at the largest free standing hospital in the world in Houston Texas. I am a float nurse so have to adapt to many different areas and go to a different unit every day. If you ever watch the show on TLC Tues night called the Little Couple. It is about one our Dr.s and her husband who are dwarfs. One episode about a golf tournament and Bad Pants Fashion Show I was in the audience in a black sweater.I have made some lifelong friends during my journey going to support groups and conferences. This surgery has opened a whole new world for me. Even being diagnoised with Lymphedema has been a blessing in being  able to reach out to others and share experiences and encourage and teach others around me.

Hi, I am 16 and was diagnosed with lipoedema a just under 2 years ago. I have been dieting for about 2 months and I have found it extremely difficult to come to terms with the realisation that I wont be able to lose weight from the effected areas, which consequently for me are my legs, hips, bum and arms, and I am therefore concidering liposuction.
I am a size 16 at the moment, but do not wish for it to progress any further. I am not dilusional and I do realise that this is not just a quick fix for weight loss. But I am extremely unhappy, and devistated that no matter what I do, I will never be able to lose the weight naturally. I have looked into it with my mum, and on many lipoedema sites, it mentions that liposuction is a good method to not only help with the apperance, but the pain. At the moment, I do not have much pain, and have never really had much pain before. I went through a period of secondary lymphodema, but have currently got that under controll and haven't experienced any signs for over a year. I am wearing the compression stockings and dieting. I think my condition is stable and not to the extent that most people suffer from, due to the fact I was diagnosed pretty early into the condition. Is there any advice you can give me? Do you think that it would be the right desigion to try to correct it now before it's too late?
I know that the treatment of liposuction is not a perminent fixture, and will probable have to be re assessed in about 5-15 years, but I am hoping that it will not reach the stage of those 'extreme' cases you read about on the internet. Please help me, I am really worried. I have to do something now, because everytime I look in the mirror I am reminded of the condition. I am even withdrawing myself from social events etc... because I am so embarassed and self concious about how I look. I know I sound really horrible because I haven't got it as bad as many other women, but I need to do something! I am sooo scared. I can't live like this anymore. Please can you advise me? or simply give you're oppinion? It is affecting my whole life.

Kind regards, Lydia x

Does anyone know of a place to find doctors to diagnose lipedema?? I live in Arkansas and have no idea of what type of doctor to go see. Thanks!