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Understanding Lipedema and Empowering Our Patients

Understanding Lipedema and Empowering Our Patients

A guest blog post by Dr. Lindy McHutchison, M.D. This is an 8-minute read.

I’m passionate about helping people learn about lipedema, so women affected by it can stop blaming themselves for this very common, but little known, frustrating, life-changing fat disorder that mainly affects women. First, I’d like to explain how I became interested in lipedema, and then we’ll look at the basics of lipedema and how our patients experience it.

I initially joined the medical community as an OB-GYN for 12 years at Kaiser Permanente in Southern California. In 2002, my family moved to North Carolina. Several years later, in 2007, I developed an interest in, studied, and trained in venous and lymphatic medicine. In 2008, I became the medical director of Carolina Vein Center in Durham, North Carolina.  At the vein center, my two worlds of OB-GYN and venous and lymphatic medicine collided, when I noticed that many of the female patients not only had venous disease, but lipedema as well!  

I began to further educate myself about lipedema and have learned about the close relationship lipedema has with the venous and lymphatic systems. I began to lecture to the medical community on lipedema, started a lipedema clinic, and now I’m involved in lipedema research.   

I’m thrilled my OB-GYN and vein worlds collided, as my lipedema clinic is now more than 50% of my practice. My lipedema program is a women’s health care program, where I diagnose and educate patients about their conditions. I help women understand and manage their lipedema by explaining effective therapies in detail. Most importantly, I validate these women who have blamed themselves for their body habitus, I give them explanations for many of the unusual symptoms they experience, and I reassure them that lipedema is the fat that’s not your fault.

The Basics of Lipedema

Lipo means fat and edema means swelling, so lipedema quite literally means fluid and swelling in the fat. Although the condition was described 75 years ago by Mayo Clinic doctors Hine and Allen, lipedema has only recently gained momentum as a recognized condition and diagnosis.

In general, lipedema is a complicated, poorly-understood, chronic fat disorder that can be progressive. Because the lipedema tissue is tender, lipedema has been called The Painful Fat Syndrome. With progression, joints can become affected and mobility can become restricted. It primarily affects the hips, buttocks, legs, and arms of women in a bilateral and symmetrical way. Interestingly, the rib cage is spared, giving lipedema women the classic pear-shaped silhouette.   

Also interesting is that 99.9% of lipedema diagnoses are in women, as lipedema is rare in men. Although lipedema is a little-known disorder, it’s very common, and affects 8% to 10% of all women in the U.S.

For my patients, I explain that lipedema is called "The Fat That’s Not Your Fault." This is a chronic fat disorder where the body becomes a fat factory, building up fat in certain parts of the body. The lipedema fat is considered lifestyle resistant, in that normal diet and exercise don’t work to rid or reduce the lipedema fat. As a result, a mental struggle of self-blame and frustration is often present in lipedema patients.

Lipedema is also called “The Painful Fat Syndrome,” because the lipedema fat tissue can be painful or tender to touch. Patients particularly notice tired, achy, heavy, tender, swollen legs that feel progressively worse at the end of the day or with long standing. They frequently notice tenderness in their legs at night when a child, pet, or even bedding touches their legs. Frequently, they complain that the blood pressure cuff hurts their arm and state that the massages during pedicures are uncomfortable.

Image: Lipedema fat is different than normal adipose. The lipedema tissue feels nodular from small fat nodules or lipomas and also has inflammation, fibrosis, increased vascularity, and elevated sodium, as well.

Lipedema is Underdiagnosed

One fundamental issue is that lipedema is underdiagnosed by providers.  In my vein clinic, patients complained of inability to lose weight along with a chronic discomfort in their legs. Many had previously seen a doctor for these concerns, but hadn’t received a clear explanation. Lipedema patients present to vein clinics because the symptoms of lipedema can also appear to be the same symptoms of vein problems: tired, achy, heavy, tender, swollen legs that are worse at the end of the day. Although these symptoms bring people to my vein clinic, we may discover their underlying problem is lipedema. There is an overlap of disease states as roughly 30% to 50% of lipedema patients also have venous issues.

Lipedema is not only underdiagnosed, but frequently misdiagnosed as obesity, lymphedema, or even fibromyalgia. Many providers don’t realize or recognize what they’re seeing is actually lipedema. Most providers recommend traditional weight loss diets and exercise regimens for these patients. Sadly, lipedema is considered lifestyle and diet-resistant, as the lipedema tissue volume does not decrease appreciatively with diet or exercise. Many of these women are dieting and exercising, as their doctor has recommended, however, since lipedema tissue is diet and lifestyle resistant, their leg volume doesn’t change. The patients don’t understand, become frustrated, and typically blame themselves.  

Diagnosing Lipedema

My patients are sometimes surprised to discover that there is no lab test or x-ray that proves the existence of lipedema. It is a clinical diagnosis made on the patient’s history and physical exam. The differential diagnoses include conditions like lymphedema, fibromyalgia, and obesity.

With lipedema, there are classic signs and symptoms. In addition to the tired, achy, heavy leg symptoms that worsen as the day progresses, these women give a history of easy or spontaneous bruising and tenderness or pain with minimal pressure. There are other classic physical findings, including minimal pitting despite the presence of edema, and the ankle cut off sign, where swelling seems to end abruptly at the ankle and can even create a crease, like there’s a rubber band around the ankle. In lipedema, the foot is usually spared, meaning the foot and toes are not swollen like typically seen in classic lymphedema, and there are usually malleolar fat pads which are distinct fat pads both in front of the ankle bone and usually filling the space around the Achilles tendon.

 

Lipedema also has several classic fat pads around the knee. With progression, the fat pads can become overhanging. 

1- just above the knee cap,

2- inside just below the knee,

3- inside at the base of the thigh,

4- behind the knee in the knee crease.

Another important feature of Lipedema is a mismatch of the upper body to the lower body giving the typical pear-shaped silhouette.

This is because the ribs and midriff area are initially spared from deposits of lipedema fat, making the upper body not match in size to the lower body, creating the overall pear-shaped appearance.

It’s also important to examine the skin carefully for typical lipedema features. The skin may feel thin, spongy and have stretch marks.

Image: Mismatch of upper body to lower body. Rib cage area is spared, making the upper body not match in size to the lower body creating the overall pear-shaped appearance.

Larger fat pads with adjacent subtle skin creases (called walnut shell or mattress skin) and/or peau d’orange skin changes (skin looks like an orange peel) may also be present. The toes are frequently cold to touch and livedo reticularis, a faint pink lacy appearance on the skin is common. 

Types and Stages of Lipedema

Five types of lipedema:

Type I: Buttocks
Type II: Buttocks, hips, thighs, may include the knees (most common type)
Type III: Buttocks, hips, thighs, calves and ankles, but the feet are spared
Type IV: Upper arms, which can accompany any leg type
Type V: Calves and knees to ankles (rarest type)

Three stages of lipedema:

While one will read about four stages of lipedema, most physicians refer to only three stages. It’s important to remember and explain to patients that lipedema is not cancer and progression is not absolute. In fact, the most common stage is Stage 2, and while most women will progress to Stage 2, they tend to stay there, as it’s less common to progress to Stage 3.

Stage 1 - The skin is smooth but spongy. Small fat nodules are present and the skin bruises easily. There is pain or tenderness, but perhaps only with pressure.

Stage 2 - The skin becomes nodular and larger fat deposits occur. The ankle cut-off sign appears, as well as non-pitting edema, malleolar fat pads, fat pads around the knee, and noticeable skin indentations may form. The upper body mismatch is more evident and lymphatic dysfunction occurs. 

Stage 3 - There are large fat lobules and creases in the skin with overhanging fat pads around the ankles, knees, and hips. The skin has a rubbery consistency. Pain occurs more frequently and without much pressure. Mobility may be severely restricted, pain and discomfort can be severe, and the patient may find it very difficult to achieve ordinary daily tasks.

Why Do People Get Lipedema?

When you give a patient a lipedema diagnosis, I’ve found they often experience a sequence of emotions. First, they’re confused, because they’ve never heard of lipedema. Next, they usually feel validated and relieved to learn the fat is not their fault, then feel happy, because they finally have a name for their condition that they’ve suspected all along. Then, they usually feel despondent to learn, while we can help manage the symptoms and possibly the progression, that Lipedema is chronic, there are no simple, effective treatments, and currently, there’s no cure - at least, not yet.

The patient may also wonder, “Why me?” They feel cheated and feel it’s unfair, because their whole life they’ve been told they were fat, told to diet and exercise, and despite dieting and exercising, they body volume doesn’t change.

So far, we do not have a clear answer to why people get lipedema. Genetics is almost certainly a primary factor, as lipedema does run in families. However, to date, a specific gene hasn’t been identified.  Female hormones probably contribute to lipedema, as well, since lipedema seems to advance during the hormonal phases of puberty, pregnancy, and peri-menopause. It’s possible that surgery, stress, and other unknown factors play a role in triggering or worsening existing lipedema. We do know that inflammation is present in lipedema and the vascular and lymphatic systems are also involved.

It’s speculated that something in the edema fluid may also trigger the formation of lipedema tissue. So, most current therapies, also called decongestive therapy, are directed at moving the edema out of the tissue. 

Treatment and Therapies for Lipedema

There are many effective therapies, however currently, the only definitive treatment for lipedema is liposuction. Sadly, liposuction isn’t always a possibility for our patients, as liposuction is not usually covered by insurance, and it can be prohibitively expensive. Also, liposuction for lipedema is not like standard liposuction. Liposuction for lipedema must be performed by a qualified surgeon who is especially knowledgeable about liposuction in lipedema patients. For most lipedema patients, liposuction is simply out of reach.

In discussing the goals of therapy, it’s important to emphasize shared goals, which are preventing progression, decreasing triggers, and improving pain and discomfort. In teaching patients about the effective therapies, it’s important to emphasize that currently, lipedema is a self-care diagnosis, meaning the patient usually coordinates their own manual lymphatic drainage appointments and also learns to utilize and incorporate other available decongestive therapies into their daily life.   

Education is key, as patients have better outcomes with lipedema therapies when they understand exactly how and why each therapy works. Physicians should be mindful to explain why particular nutritional recommendations are given, and carefully explain the advantages and disadvantages of herbal treatments and/or prescription medications.

Decongestive therapy is currently the most effective therapy for lipedema. It refers to any therapy that helps mobilize fluid and edema out of the tissue. There are many types of decongestive therapies and they range from manual lymphatic drainage (MLD) massages, performed by a specially trained MLD therapist, to compression garments which help mobilize edema. There are many decongestive tools that can be utilized at home by the patient themselves, like dry brushing, tissue rollers, rebound therapy devices and use of pneumatic compression pumps. Also, low impact exercises, lymphatic yoga, deep breathing and hydrotherapy are all considered decongestive therapy, as they are all performed to help mobilize fluid and edema. Because most patients will be organizing their own MLD appointments and integrating other therapies into their daily lives, lipedema is considered a self-care condition. So, it’s important for patients to understand why decongestive therapy is recommended and how different therapies work.  

In respect to edema, it’s important for patients to understand one of the main challenges is gravity, as gravity encourages fluid to settle in the legs.  Fighting gravity is not easy, especially since we stand or sit up to 18 hours per day. The challenge is to prevent pooling and move the fluid / swelling up and out of the legs, hips, and buttocks. To counteract gravity, compression garments are recommended all day, every day, with frequent leg elevation and incorporation of decongestive therapies.

In educating patients, I use a tide metaphor: You can hold back the tide, but when you let go of the tide, it will roll right back in. We teach patients to "hold back the tide" for 18 hours a day through frequent elevation, compression garments, low-impact movement, and decongestive therapies.

A Message of Empowerment

Although lipedema can evoke mixed emotions for our patients, I hope we can give them a message of empowerment. By understanding and naming their condition, often after decades of struggling with it, they gain a new feeling of self-empowerment and control over their lives. It’s time for our patients, who have dieted and exercised their whole lives, to stop blaming themselves and stop believing they’re doing something wrong.

So, if you take anything away from reading this article, remember this phrase:

“Lipedema - The Fat That’s Not Your Fault.”

Please share this message with your patients, as my patients find it very uplifting. Knowing about lipedema validates them and gives them hope. While sadness can come with the diagnosis, a lipedema diagnosis frequently helps the patient find a new sense of self. Many find optimism in their lipedema diagnosis and become ambassadors to help others. I hope you can help me spread the same message and help raise awareness of Lipedema - The Disease They Call Fat.


About the author

Lindy McHutchison, M.D. is the medical director at the Carolina Vein Center in Durham, North Carolina. She earned her medical degree from the Louisiana State University Medical Center and completed her OB-GYN residency at the University of Southern California/Los Angeles County Hospital. She practiced for 12 years as an OB-GYN physician at Kaiser Permanente in San Diego. Since 2007, at the Carolina Vein Center, she focused on lipedema and venous and lymphatic medicine. Dr. McHutchison has worked with the FDRS (Fat Disorder Research Society) and Lipedema Foundation. She was also a member of the United States of America Lipedema Standard of Care Consensus Committee. Dr McHutchison has a passion for medical mission work and travels to Honduras several times a year with the Hackett Hemwall Patterson Foundation.