Holistic Treatment for Lipedema: You Can Make it Better - LE&RN Symposium
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- Опубликовано: 8 сен 2024
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Holistic Treatment for Lipedema: You Can Make it Better - LE&RN Symposium
Presented by:
Catherine Seo, PhD
Leslyn Keith, OTD, CLT-LANA
Matthew Carmody, MD
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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.
Me too I couldn't wear the maternity clothes I came in to the hospital with
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?
Because it’s not a money maker. You don’t have a drug to throw at someone who will need it for a lifetime
This is SO true! Crooked big pharmacy is killing the US!
I have only the fat deposits (no pain, bruising, or limitation of movement), but this after 6 mos. carnivore. I began to slim down in the first two months only.
Dairy is not my friend-not even ghee, and not even when it's 100% grass fed.
Lipedema absolutely does affect the area under the belly button above the pelvis as well.
Yup but doctors keep telling me no. And they know everything.
Yes, it sure does!
agreed.... no doubt about it.
@@tknzdworldfirstidentylinke6404 and that is the problem most of us have had. Doctors who think they know everything blaming us for a condition we could in no way be responsible for.
What can we do about it
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
So are you saying that vegetarianism made your condition worse?
I have found that too much protein or keto aggravated the condition for me.
What is “lymph tea”?
@@sarcasticcat4982 i think high carbs aggravate, because carbs are inflammatory
@@lisaann6267yeah and sometimes when people are vegetarian they eat A LOT of carbs. So maybe that is why hers got worst?
@@sarcasticcat4982 potatoes, rice, corn & especially wheat. Wheat makes me swell massively.
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
How is it going now?
I'm 53 and just days into realizing this is me.
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!
Start researching on your own. Attend the numerous lip and lymphadema conferences that happen. You may need to travel. Start using your anger for searching and getting answers. There's no time like now
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.
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.
I was seeing the signs since I was 12 with arms. I lost weight in college kept it off for years. But once I started birth control and fertility (Ivf) treatments my body went crazy. After the first pregnancy I’ve never been the same after delivery. My pelvis was dislocated and once I lost the “baby” weight, the skin on my thighs were sagging. I had no idea what was happening to me until a few months ago.
This is a wonderful and comprehensive talk on a mystery disease that I’ve been struggling with. Thank you all!
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.
In my experience, if your symptoms confound them, then ‘you are the problem & blame is shamed on you!’ And when this happens & you speak up or ask questions, you become gaslit & treated creepily
@@Amy-tk3wv I agree. Very true.
You make valid complaints, many of which might be resolved by consulting with a naturopath physician who treats the whole body and not just "one condition" at a time. Of course, the issue there is that they charge cash and generally can not bill insurance companies for their services. I hope this matter of insurance billing by naturopaths can be authorized in American healthcare so that patient needs are placed first.
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 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!!
What do you do if you have an eating disorder? Dieting has ruined me. Are you addressing eating disorders within the lipidema community?
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.
The medical bias is something that is a challenge across most health conditions. I think there needs to be a huge push in their training and even course to help them to remove this bias so it doesn’t negatively impact their patient. When a patient feels unheard, invalidated we do go silent, hide our symptoms and then when the doctor finally diagnose the conditions it is too late for optimal treatment. Years ago in my early 20’s I went to doctor with server pain in my upper side, I was concerned of gall stones, fobbed off by doctor, wound up at 24 yo having my gallbladder burst, same with heavy periods, which eventually led to a hysterectomy and removal of a fibroid that was the size of a grapefruit. I’ve gone with mother and older sister with lipedema both stage 5 and at only 47, physically active and weight fluctuates between 68 - 73kg have dimpling now all of the way down the front of my thighs and my big arms getting bigger. I try to do the narrative like you said but they impatiently look at the clock. Then when I get to lipedema they either don’t know what it is or they don’t it off and tell me to diet and exercise and even told to be mindful of sleep walking and eating 😢.
Thanks for putting this content up it does help a lot and is greatly appreciated otherwise I would have nothing like my Mum, but I do think we need to have doctors under pressure to be vigilant of their bias so that patient are not under diagnosed or misdiagnosed and wind up worse off.
Love your work
This is so encouraging I live in U.K. I’m 76years old thank you team for so much helpful info.I hope to keep in touch.
Barbara Skyrme. - I will turn 70 in January ‘23. I also live in the U.K…. Which part of the country are you in? Flick
@@flisscook8934 to Fliss Cook good to hear from you I live on the borders of Wales and England in Shropshire, at present I’m keeping well.How are you doing? Sending love to you Fliss.
Hi Fliss good to hear from you ,how are you keeping? I’m doing well but trying to lose weight.
@@barbaraskyrme7684 I am trying to do the same.... But I've noticed that since having breast cancer in 2018, was put on Tamoxifen ,which seemed to trigger Lipeodema, I haven' been able to lose much weight. I have stage 3-4 lipeo .....
Thank you, thank you, thank you.
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.
I completely agree with you. I was given Letrozole and Tamoxifen for breast cancer in 2018.... was taken off both after being in intense pain at the back of my knees. In 2019 I had it confirmed that I had been suffering from Lipoedema, probably since the age of 8-9 years old. I now have stage 3-4 Lipoe - my legs, thighs, and buttocks in a lot of pain most of the time.
Menopause, perimenopause and estrogen deficiency I believe are a triggers. Why aren’t women being treated for these symptoms using bioidentical hormone treatment? Increasing cholesterol, aches, pains, joint pain, pelvic floor issues and bladder issues, connective tissue issues like frozen shoulder, gastrointestinal issues, depression or not feeling like yourself. Also check vitamin D deficiency and hypothyroidism.
Brilliant. Helpful.Thank you❤
I can’t stop crying.
Just came across your program and cannot thank you enough for this information. For years I was told you're bottom heavy when in fact my symptoms presented early on in my early twenties. Does anyone have a recommendation for a physician who would be receptive to "partnering" with me to officially diagnose and manage my lipedema. I live in the Jupiter, Florida area. Many thanks.
Omgoodness….what a great talk!!!!
I’m 58 and I think I have this . As a younger person I was average size. It I remember going to see doctor because my lower legs were so sensitive . If I even rubbed up against something the pain was intense . Now at 58 I am 50 lbs overweight and my lower legs are looking bumpy saggy and below my knee it looks like sacks of fat or swelling . They are very tender achy and deff have a full heavy feeling . I also feel my lower legs getting big very quickly , I can feel it in my jeans , the jeans are getting tighter in that area very strange . Does this sound like this disorder ?
So much like FIBROMYALGIA SYNDROME SYMPTOMS ??? 20 yrs. ago was super misery for a hairstylist yrs ago. He shoes hurt so bad. Standing for hours. Nail tech. Sitting for HOURS. TROUBLED LEGS. ). WHAT
ARE WE TO DO, NATURALLY???
Get off sucrose, grains, gluten , dairy..... use keto recipes.
Carnivore diet has helped me TREMENDOUSLY. Hairdresser also
I would not classify lipoedema as a syndrome because it is already too difficult to deem it medically necessary to treat. Let's keep pushing for the differential diagnosis
Helpful.
Is there a link for the book: Leslyn’s presentation?
Multi organs involved. As a whole challenges to work with.
I started have pain in my right thoracic back I developed a lump started about 5 months ago I have swelling in my adomen
The fluid retention is the worst part. I have to make sure to wear loose clothes all the time, because whatever I eat, or even going too long without food, can make me 2 sizes bigger in just a couple of hours. If my socks, bra or belt get too tight then the migraines start.
Where is your 16 pages pass along?
There's got to be some kind of natural substance out there that will dissolve the fibrosis. I hope we find it soon.
I'm taking serrapeptaise for three months, no change. How long does it take to work if it does work? There's got to be something else.
Serrapeptase is one of the most potent too.
Hi, I think I have liphodema. I think it may be genetic. My gramma appeared to have this. 3 of 6 of my brothers and sisters appear to have this.
About 10 years ago my lower legs just hurt, and my doctor sent me to a vein doctor. After closing off some veins, my calfs have stayed nice, but, thighs got more liquid so they got heavier. Does this mean my veins are not working right in my whole body? Anyone investigated that?
Remember tho gene's can be turn off or on, Gene expression.
Look into the region(country) that your family history came from and see what their environment grew and ate.
The body adapts to its environment.
I missed the way to download the free ebook. Trying to learn all I can.
Me too and can't find it on the web
What is the learn website?
I have so much pain
Does liposuction permanently remove lipodema?
Also does liposuction cause other issues?
Water assisted lipo does remove the diseased fat. Lymph sparing. It seems that if performed in the 1st 2 stages then it can be lo g lasting. Of course, the care for it post surgery is crucial
This is NOT holistic treatment that improves your medical condition. It's self acceptance that you have a condition that will not receive decent treatment because of prejudice.
Can anyone tell me if it can affect the breasts? Mine are huge and one is way larger and there is access fat at the top of them and keeps growing
Please see your primary care physician about this as soon as possible if you haven't already.
@@zombiana I've had mammograms, nothing cancerous or dangerous. Just fat but probably lipedema.
@@shaybee6893 Is it a lymph node, those can be caused by muscle strain from continuous strain.
Saturated fatty acids build ups.
@@nikkola33 No, not one lump. My right is just way larger than the left, all over.
@@shaybee6893 My sister in law had that, nothing was wrong tho. I would think anything is wrong with you tho.:)
Pain to touch
So this is just unsightly but not unhealthy, except pain.
NOT belonging to a group is also OK.