Not only do I deal with severe edema off and on, but after each pregnancy, immediately after delivery I was actually heavier by almost 10 to 20 lbs before I was even discharged from the hospital due to excessive retention. Even the doctors were stumped. I am so grateful people are finally bringing this condition to light. The past 20 yrs have been miserable, especially diet after diet and getting no where.

Lipedema is a recognized illness in Germany and lymph sparing liposuction is provided as a solution as well as massage and physiotherapy. How can something be a recognized illness in one country and not in others?

This is a wonderful and comprehensive talk on a mystery disease that I’ve been struggling with. Thank you all!

Lipedema absolutely does affect the area under the belly button above the pelvis as well.

To Catherine Seo.   Thank you so much for that beautiful picture. I cried when I saw it and read it. I am now 63. I’ve battled with eating disorders since childhood. Apart from one year when my depression and hopelessness took over and I gave up and I  engaged in comfort eating and put on weight I have always been, if not slim, within my weight range. Mostly slim. My upper legs look like they belong to another person and it is so discouraging. They have large pockets of fat on them and ugly pitting. It really makes me miserable and I’d never thought of it as an illness. Now I have found you and I will do whatever is within my reach and capability to put this right. Thank you so much. It is time to start loving, helping and healing my body xx

I’m going to keep listening but it’s actually upsetting this is the first time I’ve head of going in bio identicals after listening to 1000s of hours of information on lipedema.  The first talk was great.

I can tell anyone suffering from this you must self massage, you must keep moving!  Anything physical is helpful, but range of motion is super important because if you don’t move it you lose it for sure!  Yoga is excellent because you get to control your experience and it is excellent for your mind as well as your body.

This was so helpful and I’m not crazy. I noticed it when I went vegetarian, too much carbs but unable to reverse it sadly. No shorts, bathing suits and lost my partner of 10 years cause of how my legs look. It truly is depressing. Thank you I feel some support and I will keep working on it as I am a lymphatic therapist, acupuncturist and colon therapist. I find as I do vibration exercises, drinking lymph tea and reducing the toxic load the beading isn’t as hard as they were. Again thank you

I just had a cancer removed from my boob,they also took out 7 lymph nodes that were not cancerous..now I’m worried about lymphodemia

I have been suffering for 10 years without needed appropriate intervention in SE minnesota rural area. I am a retired RN and have been totally put off by the medical community. Many doctors will not and do not want to know what i have presented to them. I have seen many over this time. I am now sadly in a wheelchair after being insulted and patronized by a system of incompetent uncaring physicians who  blame me because they dont want to listen. I am crying out for help and its met with such ridicule. How can you change a mindset in a country that worships youth and being thin. Where do I go from here! Even the mighty Mayo has been dismissive. Our medical system is so broken and doctors are forced to practice with so many restrictions! I am so broken now i cant find any path out of this misery!

I can’t stop crying.

For the first time, I feel hope. May you all be blessed for the gift you're giving those of us who suffer from this condition.

Thank you!

Brilliant. Helpful.Thank you❤

I was never diagnosed but listened to learn. I agree everyone needs to feel they belong. I never felt that. I gained weight in my mid 20s after a western doc put me on levothyroxin. Long before I new much about holistic ways. I've never been able to loose it. A doc actually laughed in my face saying levothyroxin can't do that. I said ok than how did I gain when that's all that changed ? I been eating healthy, walking all over town daily. No response. My mom and Mimi also ridicule and accuse me of eating junk. Which I don't nor would they no, I live alone. So I'm not sure what to do, I just stay active to not lose the ability to and eat healthy. I wish I new where I belong and had family, besides bio parents who don't care and never wanted me. I'm 40 on the tenth but still hurts.

Thank you, thank you, thank you.

I am 68 and have lymphedema of both legs, thigh and midriff. Probably caused by taking statin, Crestor.  I am in physical therapy, have wraps for calf, legs and thigh. Have compression pump for legs. Waiting for compression pump for midriff area. Have still had major cramps in hamstring area!! Have gone down a size in legs. Thighs still over sized. Tough for wraps to stay up on thighs and knees. Pain better. It has been over two years!!

Dr. Comody's good info leaves me with a massive question. We are saying we must convince our medical and other providers of our human qualities and our needs, and our required medical care... tell them our story. My time limit with my dr, if I get to see them rather than staff who "take messages."  

Why don't we require our doctors and our care givers be fully trained and often update and evaluate training for compassion, truth, nonjudgemental, humane respect, science based healthcare. Why can't we count on our powerful caregivers TO CARE. How do we fire a doctor for failing at the basic... do no harm. We have to tell them stories, for them to pay attention and care for us as humans. Are they that shallow? We have short term, quick diagnosis doctors and care due to profit driven healthcare. Change the system, too. Teach all the doctors to care, or they can't be doctors!

To do no harm used to be the goal... I expect better. I want a team player for my healthcare. If they are not aware of the truth, or the harm this lack of compassion can  cause, it's suffering and death.

Reconstruct our medical care system, so we can live our lives with respect and compassionate care to heal. Provide the same quality healthcare for all, regardless of current income. Our lives are at stake. It is more than just lymphedema. There are so many conditions that debilitate and shorten our lives. Teach the care givers and the patients.

Obesity? Look at the food pyramid we've been taught tirelessly for nearly 100 years. Wrong then, wrong now. Criminal anytime.

Everytime I talked to care givers about keto, low carb, dietary improvements, they went into a knee jerk cancelation of my words. This is the first year they admit they have heard of "it."

Blaming the patient for health compromising conditions and the apathy of the doctors seems wrong to me! TEACH our care givers. Including triage and intake staff. We often have 2 or 3 minutes max annually with our doctors under the current mismanaged care/profit system. And that is with interruptions every few seconds. Our doctors often don't remember what we were talking about after the interruption.

I haven't had 15 minutes with a doctor in decades. And part of your doctor time counted is intake clerk, who takes your "short info"... no stories allowed. I was told I could only address one health point each visit. Including medicine, questions about prescriptions, print-outs, etc.

Interruptions and translations by a clerk who often changes your words. All to save time and corporation money. Not the lives of patients.

Sad truth, income often affects your ability to reach your doctor. And if you are in a clinic care program, you get to struggle with a new dr. every visit. Wow.

I would suggest apathy of doctors and staff kill patients. Maybe not on purpose, just too busy. Not the patients fault, but their lives are in the balance. Not to worry, the death will be attributed to "preexisting conditions..."

"Can we schedule a follow up to discuss my appropriate care," might be a brilliant way to discover if you are going to the wrong doctor. Have the self committment to find the right doctor, if your former doctor keeps ignoring you. Don't give up on you.

Many of us, due to income, still have limited access to data on line and printouts for our doctors, who lack nothing but care for a patient. We're told we all have access now. Not true.

This past week, a health care manager told me to go to the library to access printouts of my bank statements and SS info. She stated it was totally safe. No security or personal wifi walls required. Really? Library disagreed.

Learn. Share your knowledge. Stay alive. Live well.

You can seek all you want, but you won't find fair treatment when it doesn't exist.  Sometimes doctors do far more harm than good.

Helpful.