Lipedema: When Your Fat Legs Aren’t Just Fat

Jul 7 2017 - 2:35pm

Why can’t I lose weight? Why, no matter how much I exercise, do my legs continue to be fat?

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Lipedema Treatment

To many women in their 30’s and beyond, these questions are nothing new. However, for as many as 10 million to 17 million people in the United States alone—mostly women—the cause of their distress may actually be an undiagnosed condition called Lipedema.

What is Lipedema?

Lipedema (sometimes called lipoedema) is a chronic disorder of adipose tissue generally affecting the legs, which causes the legs--and sometimes also, the arms--to accumulate fatty tissue. Lipedema can very rarely affect men, but the vast majority of people with this condition are female. Lipedema is distinguished by several unique characteristics: most notably, a distinct and unusual pattern of fat accumulation in the legs. Lipedema it involves the excess deposit and expansion of fat cells in an unusual and particular pattern that serves as the primary criteria for diagnosis.

Women with Lipedema exhibit thick, “trunk-like” legs with bilateral, symmetrical excess fat, deposited from the waist to a distinct line just above the ankles. In cases of Lipedema, there is a marked line of distinction at the ankle, and the feet are normal in size with little to no swelling. Lipedema can occur in women of all sizes, from the seriously underweight to the morbidly obese.

Unlike normal fat, lipedematous fat generally cannot be lost through diet and exercise. Causes for Lipedema are mostly unknown, although it appears to be somewhat hormone-linked, as it usually is triggered at puberty. Lipedema can also trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery, i.e., surgery of the uterus, ovaries, or fallopian tubes or any surgery with general anesthesia. Some other scientists theorize that Lipedema may be linked to high levels of cortisol, as it can also be triggered by an extremely stressful situation such as a death in the family or a divorce.

Do I have Lipedema?

There is no blood test or other standard test for Lipedema. Instead, Lipedema is diagnosed upon physical examination by a trained physician. Even though lipedema was first formally identified in the U.S. at the Mayo Clinic in 1940, most physicians are not readily familiar with the disorder.

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Classic symptoms of Lipedema include:

1) Increased symmetrical fatty tissue in the hips, thighs, medial knees, lower legs and ankles (bilaterally). It can affect the upper arms. Hands/feet are spared.
2) Increased pain, tenderness to touch
3) Bruises easily
4) Swelling (edema) can occur in the limbs
5) Decreased skin temperature in the limbs
6) Diet and exercise have little effect
7) Often occurs during puberty and pregnancy, and can increase with menopause
8) Hypermobile joints
9) Fragile vascular membranes
10) Psycho-social issues: depression
11) Low iron, vitamin D, and vitamin B 12

How is Lipedema treated?

Though diet and exercise can make you thinner on top, frustratingly, for women with Lipedema, their lower half will most likely stay the same. Currently, the most common treatment in the United States to ease the pain caused by Lipedema is called complete decongestive therapy (CDT), which includes manual lymphatic drainage and compression on the legs. This treatment is generally quite effective in relieving some painful symptoms, however, treatments must be performed consistently, at least two to three times per week, and when treatments are discontinued, the symptoms invariably return.

In the United States, treatment for Lipedema has remained conservative, with CDT, compression garments, and exercise as the standard line of defense. Liposuction as a treatment for Lipedema was actually developed in Germany in the late 1980s, and is becoming common and routine for Lipedema treatment in Europe. Until very recently, very few physicians in the United States have treated Lipedema with surgery.

New hope for Lipedema treatment:

However, a new surgery has been developed by NYC cardiovascular surgeon Dr. David Greuner, which involves injecting a liquid solution into the legs that numbs the area and reduces blood loss before unwanted fat is removed. This new surgery is known as tumescent lymph sparing liposuction and is believed to be the only truly successful long term treatment for Lipedema. This procedure has produced promising results in the reduction of pain caused by Lipedema and lowers the need to seek other therapies like compression.

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Comments

What this article doesn't state (and many articles about lipedema) is this "new and promising" treatment of tumescent liposuction that is becoming "common and routine" is paid 100% out of the patient's pockets. There are some very lucky ladies who have won appeals against insurance companies in the USA, but here in Europe there's not one insurance that will pay for it. In fact, here in the Netherlands upon appeal of my denial, I found out it's actually illegal for my insurance to pay for the liposuction even though it would save my mobility (was about 3 years away from being in a wheel chair and I was 37 when I started the liposuction) as well as save A LOT of money all around on hip/knee replacements and having to quit my job and go on disability. Ironically if I was still living in the US, I probably could have gotten it paid for. Also, what isn't stated is conservative treatment of MLD and compression isn't always covered by insurance. If it is, often you can only get 1 treatment a week or bi-weekly which doesn't really help all that much. So there is a lot of room for improvement on not only awareness of this condition, but treatment.
Hi, Petra! Thanks for commenting! I think that's so interesting (and frustrating!) about the surgery being self-pay. I know I have seen a few stories of women who have been successful in fighting their insurance companies here in the States, but by and large it is self-pay here, as well. Lipedema is not yet a well-recognized diagnosis here. It's exciting, nonetheless, that there are cases out there of women who are finding true healing from this condition through surgery, as opposed to just management of their symptoms with compression and MLD. I have worked in the healthcare field for over 20 years, and had never even heard of lipedema until I began researching this story! Imagine my relief and surprise and shock when i began looking at pictures and realized that I am looking at exactly the same as I see in my own legs when I look in the mirror! So do I understand that you did get the surgical treatment? How has your experience been? Are you happy with your results? How has your mobility increased, and your pain decreased, and would you do it again?
Hi Danielle, Yes, I have had 6 tumescent liposuction procedures under local anesthesia so far, with a 7th coming in October. I was diagnosed as late stage 2, early stage 3 and had lipedema EVERYWHERE. The only spots that have been spared is hands, feet, head, neck, upper shoulders/back, chest. Everything else has had lipedema growth, including my stomach (not uncommon but on the rarer side within the lipedema community). I've already had about 35 liters removed and probably have another 5 to go. I've been writing about my progress at whatislipedema dot com which includes all 6 surgeries so far and the recovery. But overall, it's been a pretty amazing experience. I'm over the moon with my results so far. I went from barely being able to walk due to the way the fat between my legs was growing (made me walk on the side of my feet) to being able to hike mountains again. Unfortunately, the liposuction I had on my stomach back in February has allowed me to start walking with proper posture which triggered a genetic lumbar spinal stenosis so I'm back to barely being able to walk again. It's pretty frustrating spending over 20k to fix yourself only to find out you're still broken. The lipedema pain has decreased a lot in the treated areas. I can get sports massages on my legs again and the cat walking across my legs is no longer agony. Extreme pressure (think 60kg bar resting across the top of my legs at the gym for calf raises) is still pretty painful, but while it hurts (not sure if that's lippy pain or just a normal person's experience of pain) it's not leaving massive bruising like it would before. So would I do it again? 100 times yes. I wish I'd known about lipedema and this surgery 15 years ago. However, I count myself lucky that it was found in 2015 when I was living in Europe vs. still living in the states since they're light years ahead over here.
Thank you so much for sharing your experience! As a woman living in the US, I have only recently learned of surgical treatment for lipedema, as it's still so rare here! I am hopeful that with advances in understanding and treatment of this condition, more physicians will learn about how to properly perform surgery to correct lipedema, and that insurers will begin to cover treatment for what is not only medically necessary, but obviously life-altering treatment!
Also, Petra...thank you for the link to your blog! Simply fascinating! I have spent the better part of a couple hours today reading through all of your surgery journals. I am inspired to learn more! Although it seems like a tough road to travel, I adored the post about your trip to Disneyland...PAIN FREE! :)

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