When dealing with the effects of lipedema, your body can also feel the repercussions of direct impact on your lymphatic and venous circulation system. Both systems together help the body create lymph. Venous disorders like venous hypertension and venous reflux impact these combined systems to create excess lymph production. Having an overwhelmed production can lead to overloaded lymphatic circulation. Both the venous system and our lymphatic circulation utilize passive contractions to clear this fluid from our limbs.

As a result, our team has put together some of the most important and most impactful information about Lipedema, how it can affect your veins, and how to get a proper diagnosis. Read it, re-read it, and share it with the women in your life. Some of the pain we’ve lived with for decades may actually have a life-changing solution! 

venous insufficiency

What is Lipedema?

Despite affecting an estimated 11% of women around the world, Lipedema is not yet widely known. Fat cells, (also referred to as adipose tissue) provide the human body with both cushioning and insulation. Lipedema affects the accumulation of these fat cells in the body, resulting in bulging, irregular fat in the affected areas. The legs are the most commonly affected area, but sometimes spreading occurs in the torso, and in many cases, excessive clustering of fat cells is noticed in the arms as well. Regardless of the affected area, the symptoms are equally debilitating, and unfortunately, these fat cells are equally resistant to both diet and exercise programs. 

Unlike Lymphedema or general obesity,  Lipedema has a tendency to affect both limbs equally and generally becomes more apparent over the course of time. Lipedema’s progressive nature makes getting a proper diagnosis and treatment imperative and extremely time-sensitive – as the disorder progresses so does the pain, immobility, and discomfort.

In addition to the characteristic disproportionate fat accumulation, there are specific physical signs and symptoms of Lipedema. Do any of the following Lipedema symptoms sound like something you regularly experience?

Lipedema Symptoms Checklist:

☑Tender skin that is sensitive to the touch, feels pressure when walking or climbing stairs, crossing your legs, or sitting for long periods of time.

☑Skin’s surface feels nodular and firm, like beans in a bean bag or rubber balls. 

☑Skin’s surface is uneven, with large bulges and valleys up and down. Areas that were traditionally thought of as cellulite are much more dramatic and bulging. 

☑Skin’s temperature is relatively cool.

☑Legs feel heavy and tired.

☑Swelling in the affected area (legs, arms), worsening during the day, and better at night after you’re able to elevate your limbs (such as laying in bed). 

☑Easy bruising.

☑Visible veins.

☑Disproportionate fat accumulation, not affected by calorie restriction. Think extreme “pear-shaped” body. 

☑Feet and hands are unaffected by weight gain or swelling. As a result, there’s often a “cuff” at the ankles or wrists.

Lymphatic Issues Occurring with Lipedema

Our lymphatic system has several key jobs to help our body function properly. First, it drains our body cells of any debris that needs to be removed. It also drains any excess fluid our tissues have built up. The lymphatic system also transports any clean fluid back to our blood that needs it. With such an important job for our body, it is critical to understand how lipedema can cause additional lymphatic issues. Individuals with lipedema will notice that their lymph fluids are not properly draining, causing a buildup in the legs. This fluid building can be painful and cause additional swelling.

venous insufficiency

Venous Issues Occurring with Lipedema

Our venous system is made up of deep venous pumps and veins located throughout the legs. These pumps when properly working pump 90% of the blood from the legs. The other 10% of the blood is pumped through a superficial venous system. While this system is typically less important than the deep venous pumps, they are at more risk when lipedema is involved. Blood flow may reverse and flow in the opposite direction; healthy vein valves ensure our blood is flowing in one direction for a healthy system.

Venous Insufficiency & Veno-Lipo-Lymphedema

The symptoms of Lipedema and venous insufficiency are similar. They both cause heaviness, tenderness, fatigue, and swelling. They often both have discoloration in the shins, easy bruising, and prominent veins. In more advanced cases of venous insufficiency, not only does venous lymphedema develop, but a secondary Veno- Lipo- Lymphedema develops. With the overwhelmed lymph circulation, the ability to clear fatty acids from the affected tissue is compromised and a secondary fat accumulation occurs. In many cases, the best way to differentiate between lipedema and venous insufficiency and veno- lipo-lymphedema is to have a specialized standing venous Doppler ultrasound to check for venous reflux.

venous insufficiency

Getting a Lipedema Diagnosis & Treating Vein Issues

Now that you’ve reviewed the signs and symptoms of Lipedema, determined that you identify with at least some of them, and you’ve familiarized yourself with other commonly related diagnoses, it’s time to find a Lipedema specialist and get tested! Each Lipedema doctor will have their own preferred method of diagnosing their patients and typically will include a physical exam, patient questionnaires, and then additional testing and ultrasounds to further support the physical exam. 

Below are the different tests you may experience during this time, and it’s important to keep them in mind as you select your doctor. Moving forward, thoroughness will be your best friend; we highly recommend “interviewing” different Lipedema experts to find someone you trust, someone who can provide at least some of these diagnostic tests, and someone who is well versed in treatment options.

Note: There is no single test to diagnose Lipedema. Tests, however, are important to rule out a related disorder.

Stemmer’s Sign Test

The Stemmer’s Sign is the inability to pinch the skin between the toes or fingers. As mentioned in our last section, Lipedema in advanced stages can be complicated by secondary Lymphedema and may have a stemmer’s sign. This test can help Lipedema experts determine if this is the case for you. 

Venous Doppler Ultrasound

A Venous Doppler Ultrasound is a very useful test for the diagnosis of Lipedema. Lipedema has many similarities to venous insufficiency (as explained above), so this can help rule out or confirm venous insufficiency.  The Venous Doppler Ultrasound can readily detect venous insufficiency if done properly and by having the patient stand while completing it. Unfortunately, most hospital vascular labs complete Venous Doppler Ultrasounds with the patient lying down, While this is the typical way to find Deep Vein Thrombosis (DVT), it is definitely not a successful method to detect venous insufficiency. A standing venous Doppler ultrasound is a painless, non-invasive, and inexpensive test that provides a lot of useful information about venous circulation. The Doppler ultrasound not only helps determine the presence of underlying venous problems, but it also gives critical information for managing Lipedema. If venous insufficiency is present, it is important that treatment is given as the resulting increased venous pressures can greatly aggravate Lipedema.

Lymphoscintigraphy

This is generally only used in complicated cases, where clinical diagnosis is not clear. This is a nuclear scan that assesses the lymph system. It may come back as normal in patients with Lipedema and may show the characteristic “corkscrew” changes with Lymphedema. In most cases of Lymphedema, lymphoscintigraphy shows delayed uptake. So lymphoscintigraphy can be very helpful to determine if and how significant a role lymphedema is playing in an individual’s symptoms, especially when there are widespread issues of swelling in the body. 

Treating Vein Issues

Vein insufficiency and other venous issues can cause your lipedema symptoms to worsen over time. Significant vein insufficiency can cause venous issues that are not superficial such as ulcers. If you are looking into surgical treatment for lipedema, you will need your vein issues to be treated first. Vein issues can cause problems during surgery if blood flow is not working correctly. It can also lead to poor wound healing after the procedure has been completed. The increased risk of blood clots is one factor any surgeon will want to avoid.

Life After Diagnosis

First – congratulations! We know the road to diagnosis is emotionally draining, physically painful, and it can feel lonely and discouraging. The time and research it takes to make it to this point are huge, and you should be proud of yourself and the courage it takes to be your own advocate. Our hope for all women with Lipedema, whether they are our patients or not, is that we can provide valuable tools and knowledge so that more women can make it to this point and take the next step in living a more mobile, healthy, and enjoyable life. 

venous insufficiency

After going through the diagnosis process and receiving a positive Lipedema diagnosis, most patients are relieved, overjoyed, and validated by their endless search. After years of living with the private struggle and knowledge that “something just isn’t right” in their body, putting a name to the issues is a huge win. And after an official diagnosis, there are many different treatment paths available to you! A treatment plan should be discussed and developed between you and your Lipedema doctor, but you can read more about the non-surgical and surgical options that we recommend to our patients. While these will always depend on specific cases and patient needs, they can give you an idea of what options may be available to you. Good luck! 

 

June is Lipedema Awareness month, one in which the Lipedema community focuses (even more than usual) on how to reach women who have lived with this painful and distressing disease. While we’ve seen great strides in awareness, insurance coverage, and slightly greater recognition of this disease in the medical community, we continue to fight an uphill battle as women are underdiagnosed or completely dismissed when discussing their struggles and side effects with their providers. As a result, our team has put together some of the most important and most impactful information for all of you! Read it, re-read it, and share it with the women in your life. Some of the pain we’ve lived with for decades may actually have a life-changing solution! 

An illustration of Cartoon Women with Lipedema jumping into the air

What is Lipedema?

Despite affecting an estimated 11% of women around the world, Lipedema is not yet widely known. Fat cells, (also referred to as adipose tissue) provide the human body with both cushioning and insulation. Lipedema affects the accumulation of these fat cells in the body, resulting in bulging, irregular fat in the affected areas. The legs are the most commonly affected area, but sometimes spreading occurs in the torso, and in many cases, excessive clustering of fat cells is noticed in the arms as well. Regardless of the affected area, the symptoms are equally debilitating, and unfortunately, these fat cells are equally resistant to both diet and exercise programs. 

Three woman in their underwear in a line

Unlike Lymphedema or general obesity,  Lipedema has a tendency to affect both limbs equally and generally becomes more apparent over the course of time. Lipedema’s progressive nature makes getting a proper Lipedema diagnosis and treatment imperative and extremely time-sensitive – as the disorder progresses so does the pain, immobility, and discomfort.

In addition to the characteristic disproportionate fat accumulation, there are specific physical signs and symptoms of Lipedema. Do any of the following Lipedema symptoms sound like something you regularly experience?

Lipedema Symptoms Checklist:

Signs and Symptoms of Lipedema

3 Stages of Lipedema

Overall, Lipedema appears in a series of three stages. Do any of these sounds like you?

Stage 1: The patient’s skin is flat and stretched over pearl-sized nodules.

Stage 2: The patient’s skin is indented, covering a layer of fat cells that look like a pearl to apple-sized masses. 

Stage 3: Skin is indented, sometimes with much larger bulges, and skin covers pearl-sized nodules in combination with excessively large fat masses, causing lobules along the legs, hips, and thighs and frequently extending to the torso or upper arms.

Lipedema Infographic displaying the stages of lipedema

Below are conditions that can be confused with and can affect people with Lipedema. Because there can be so much overlap in appearance and symptoms, only clinicians with the training and experience to diagnose and treat these conditions can differentiate them. If you’re diagnosed with one of these conditions but you feel strongly that the diagnosis is incorrect, these summaries can help highlight why. 

Lymphedema

While Lipedema typically does not have to swell in the patient’s feet and hands, Lymphedema will always have swelling in these areas. Lipedema symmetrically affects both legs equally, but Lymphedema usually affects one leg or arm and leaves the other leg or arm unaffected. There may be overlap in these two diseases and treatments can be similar, but some patients only experience Lymphedema after their Lipedema progresses into later stages. 

Obesity

Obesity is much more common than Lipedema, and the most common misdiagnosis for it. While obesity is the accumulation of excess fat, stored centrally inside the abdomen or belly, Lipedema is the excess accumulation of fat out of proportion on the extremities, and typically not in the abdomen or belly. There may be overlap in these two conditions, too. In fact, sometimes obesity develops as a secondary condition due to the mobility problems caused by the Lipedema. So, not only is lipedema often misidentified as just obesity, but obesity can also complicate Lipedema, and be a symptom of it. 

Venous Insufficiency and Veno-Lipo-Lymphedema

The symptoms of Lipedema and venous insufficiency are similar. They both cause heaviness, tenderness, fatigue, and swelling. They often both have discoloration in the shins, easy bruising, and prominent veins. In more advanced cases of venous insufficiency, not only does venous lymphedema develop, but a secondary Veno- Lipo- Lymphedema develops. With the overwhelmed lymph circulation, the ability to clear fatty acids from the affected tissue is compromised and a secondary fat accumulation occurs. In many cases, the best way to differentiate between lipedema and venous insufficiency and veno- lipo-lymphedema is to have a specialized standing venous Doppler ultrasound to check for venous reflux.

Getting a Lipedema Diagnosis & Next Steps

Now that you’ve reviewed the signs and symptoms of Lipedema, determined that you identify with at least some of them, and you’ve familiarized yourself with other commonly related diagnoses, it’s time to find a Lipedema specialist and get tested! Each Lipedema doctor will have their own preferred method of diagnosing their patients and typically will include a physical exam, patient questionnaires, and then additional testing and ultrasounds to further support the physical exam. 

Below are the different tests you may experience during this time, and it’s important to keep them in mind as you select your doctor. Moving forward, thoroughness will be your best friend; we highly recommend “interviewing” different Lipedema experts to find someone you trust, someone who can provide at least some of these diagnostic tests, and someone who is well versed in treatment options.

Note: There is no single test to diagnose Lipedema. Tests, however, are important to rule out a related disorder.

Stemmer’s Sign Test

The Stemmer’s Sign is the inability to pinch the skin between the toes or fingers. As mentioned in our last section, Lipedema in advanced stages can be complicated by secondary Lymphedema and may have a stemmer’s sign. This test can help Lipedema experts determine if this is the case for you. 

Venous Doppler Ultrasound

A Venous Doppler Ultrasound is a very useful test for the diagnosis of Lipedema. Lipedema has many similarities to venous insufficiency (as explained above), so this can help rule out or confirm venous insufficiency.  The Venous Doppler Ultrasound can readily detect venous insufficiency if done properly and by having the patient stand while completing it. Unfortunately, most hospital vascular labs complete Venous Doppler Ultrasounds with the patient lying down, While this is the typical way to find Deep Vein Thrombosis (DVT), it is definitely not a successful method to detect venous insufficiency. A standing venous Doppler ultrasound is a painless, non-invasive, and inexpensive test that provides a lot of useful information about venous circulation. The Doppler ultrasound not only helps determine the presence of underlying venous problems, but it also gives critical information for managing Lipedema. If venous insufficiency is present, it is important that treatment is given as the resulting increased venous pressures can greatly aggravate Lipedema.

Lymphoscintigraphy

This is generally only used in complicated cases, where clinical diagnosis is not clear. This is a nuclear scan that assesses the lymph system. It may come back as normal in patients with Lipedema and may show the characteristic “corkscrew” changes with Lymphedema. In most cases of Lymphedema, lymphoscintigraphy shows delayed uptake. So lymphoscintigraphy can be very helpful to determine if and how significant a role lymphedema is playing in an individual’s symptoms, especially when there are widespread issues of swelling in the body. 

Life After Lipedema Diagnosis

First – congratulations! We know the road to diagnosis is emotionally draining, physically painful, and it can feel lonely and discouraging. The time and research it takes to make it to this point are huge, and you should be proud of yourself and the courage it takes to be your own advocate. Our hope for all women with Lipedema, whether they are our patients or not, is that we can provide valuable tools and knowledge so that more women can make it to this point and take the next step in living a more mobile, healthy, and enjoyable life. 

Woman in a light blue sweater jumping in front of a pink background

After going through the diagnosis process and receiving a positive Lipedema diagnosis, most patients are relieved, overjoyed, and validated by their endless search. After years of living with the private struggle and knowledge that “something just isn’t right” in their body, putting a name to the issues is a huge win. And after an official diagnosis, there are many different treatment paths available to you! A treatment plan should be discussed and developed between you and your Lipedema doctor, but you can read more about non-surgical and surgical options that we recommend to our patients. While these will always depend on specific cases and patient needs, it can give you an idea of what options may be available to you. Good luck! 

 

Getting an initial Lipedema diagnosis is a challenge for many women suffering from it. In fact, an overwhelming majority of patients seeking treatment are well into their forties, fifties, sixties, or later in age, simply because they had never heard of lipedema or been diagnosed with it. After decades of being diagnosed with a high Body Mass Index (BMI) followed by a general obesity diagnosis or misdiagnosed as lymphedema, some of these women with lipedema sought alternate explanations for their pain, discomfort, and unsuccessful weight loss, despite regular diet, exercise, and in some advanced cases even after undergoing bariatric surgery.

A wide diversity of woman laughing together

The Body Mass Index (BMI) calculation is an unfortunate oversimplification of a person’s health, and ignores extremely important factors that are imperative for accurate diagnosis and treatment plans. Family history and genetics, general lifestyle and activity levels, age, gender, and body composition (muscle mass, water content, bone mass) are all essential parts of our health profile, all of which are ignored by the BMI calculation. Despite all of this, it continues to be used worldwide to aid in diagnosing (or misdiagnosing and oversimplifying) patient health profiles. 

How is Body Mass Index (BMI) calculated, and what’s the point?

Body Mass Index (BMI) = weight in pounds (or kilograms) divided by height in feet squared (or meters squared). 

Body Mass Index (BMI) is simply an overall numerical score (like height and weight) which is not a biological representation of a person’s overall health. While the World Health Organization (WHO) defines a BMI over 25 as overweight and over 30 as obese, this is actually an inaccurate and incomplete assessment. Overall, obesity is a condition where fat mass affects patients metabolically, chemically, and mechanically (for example, in your joints).

Chart displaying Body Mass Index

Lipedema vs. Obesity Using BMI

Because Body Mass Index (BMI) is a calculation that illustrations the relationship between a person’s weight and height, it equips healthcare providers with one tool in evaluating a patient’s overall health. Specifically, these ranges are used to categorize whether a person is underweight, in a normal weight range, overweight, or obese. While BMI does not provide the full picture of a patient’s health or the full body composition breakdown, it is a commonly used factor in diagnosing numerous diseases.

Fat cells, (also referred to as adipose tissue) provide the human body with both cushioning and insulation. Lipedema affects the accumulation of these fat cells in the body, resulting in bulging, irregular fat in the affected areas. The legs are the most commonly affected area, and in many cases, excessive clustering of fat cells is noticed in the arms as well.

However, Lipedema causes fat in a different proportion on the body and has a different metabolic, chemical, and mechanical effect. Both obesity and Lipedema have increased BMIs, but they are not one and the same. When we use BMI as a blanket for Lipedema diagnosis, it’s an unfair and incomplete assessment.

Lipedema is metabolically the opposite of obesity – both are associated with excess fat accumulation, however, obesity presents with fat accumulated in the central area of the body, primarily in the abdomen, and is associated with diseases such as diabetes, high blood pressure, high cholesterol, and cardiovascular disease. However, lipedema presents with peripheral fat in the extremities, while the abdomen and/or waist are typically unaffected. But because both diseases increase a patient’s BMI, misdiagnoses are common and destructive. This illustrates one reason why BMI is not a biologically valid way to diagnose obesity or lipedema.

4 Reasons Body Mass Index (BMI) is Dangerously Flawed

1 – The creator of BMI was a mathematician, not a medical professional. 

Man pointing at blackboard

Interestingly, the origins of this formula were not used for individual health assessments at all! While Body Mass Index has been around since the early 19th century, the man who initially created the calculation knew at that time that it was flawed. Lambert Adolphe Jacques Quetelet, a Belgian mathematician, created the BMI formula as a way to quickly and easily estimate what percentage of the overall population might be obese. He was attempting to assist the country’s leaders in properly allocating resources in the 1830s. The formula Quetelet produced does is not biologically valid or based on any metabolic or physiologic princinciples. In other words, it is a 200-year-old hack that was never intended to describe diagnose obesity.

2 –  BMI ignores how fat is distributed. 

Simply put – where your body accumulates fat matters. This doesn’t only illustrate what you may or may not be suffering from (if anything) but also can help patients avoid misdiagnosis of more serious ailments that require more serious treatments. Ignoring fat distribution can easily lead to being either over or under-diagnosed, leaving patients with a false sense of security in their health, or in the reverse, being treated for something they don’t actually have. 

Woman standing together looking seriously at the camera

For example, researches from the Medical Research Council (MRC) Epidemiology Unit in the UK concluded through a series of studies that waist size, regardless of BMI, can be a greater indicator of a person’s risk of developing type 2 diabetes. After gathering data from over 340,000 individuals from 8 European countries, Dr. Claudia Langenberg and her MRC team found that a larger waist circumference is just a likely to lead to developing Type 2 Diabetes as someone with a BMI over 30 (considered “obese”) (2). They found that non-obese males (according to their BMI) with a waist circumference of at least 40.2 inches was at just as much risk for developing Type 2 Diabetes as a male with a BMI indicating they were obese. They found the same indication in females with a waist of 34.6 inches or greater. 

3 – BMI doesn’t account for bone, water, or muscle mass.

BMI calculations are oversimplified and do not account for the fact that bone is denser than muscle and twice as dense as fat, nor the amount of lean muscle an individual has. A person with strong bones, good muscle tone, and low fat will have a high BMI, so athletes and fit, health-conscious individuals will be classified as overweight, or even obese.

A female bodybuilder may have a higher BMI, but looking at their BMI number alone and diagnosing them as obese would be inaccurate. Similarly, while Lipedema will affect the BMI number, this BMI measure will not accurately pinpoint the cause of the higher measurement. 

Infographic displaying BMI Body Types

Additionally, fluid and water weight are not included in BMIs simply calculation, which can also lead to more serious outcomes when misdiagnosed. For example, women with Lipedema and Lymphedema will inevitably have an accumulation of fat cells, however, both these diseases are also classified by the excessive accumulation of fluid in affected areas. When missed or ignored, women suffering from these diseases are often misdiagnosed as obese rather than obtaining treatment for the source of their higher BMIs. 

4 – BMI ranges change based on your height.

Wide diversity of Individuals Lined up

Perhaps one of the most obvious and frustrating blind spots of the BMI calculation is that it will be more dramatically simplified for individuals who do not fall into an “average” category for height (between 5’5” and 5’9”). For both shorter and taller individuals, their “normal” BMI ranges will shrink or widen and distort the reality of their health.

For example, a person who is 6’2” in height and weighs 230 pounds has a BMI of 29.5, putting them at the far end of the overweight category, and teetering on obese. Despite having a lean body, their doctor may tell them there are concerns about their BMI and to focus on weight loss. At their height, they would need to be at around 170 pounds to fall into a “normal” category – which for many at this height would be extremely underweight and malnourished.

On the other hand, a young child who is only 4’4 and weighs 85 pounds would also be considered overweight, despite this being a generally healthy weight. Their pediatrician may push for diet or lifestyle changes that aren’t actually needed, both worrying the parents unnecessarily and instilling an unrealistic and unfair body image in the child at a very young age. 

  1. https://www.medicalnewstoday.com/articles/265215#BMI-exaggerates-thinness-in-short-people-and-fatness-in-tall-people
  2. https://www.medicalnewstoday.com/articles/246275#1

 

The story is almost always the same, and we hear it all the time; women are living in pain for the majority of their lives, begging for medical explanations and solutions, and are coming up empty. These women spend years – sometimes decades – struggling with uncontrollable and disproportional weight, deep bruising and tender skin from the lightest of touches, and have constant swelling. Their weight gain is typically in their limbs or “trunk” and widely does not affect their feet, hands, or upper body from the waist up. These symptoms progress, cause more pain, and often get to the point that women are unable to walk upstairs, take a brisk walk, or even sit for long periods of time without feeling intense pain and discomfort. 

The consistent diagnosis from their primary care doctors centers around their weight, and are diagnosed for general obesity, and prescribed treatments that range from diet and exercise to more extreme surgeries to curb appetites and encourage weight loss. Unfortunately, for those who have Lipedema, these treatments will turn up useless and ineffective, yet their doctors assume the issue is from the patient’s lack of dedication to the prescribed program, rather than the misdiagnosis of the disease known as Lipedema. 

4 Steps to a Lipedema Diagnosis

What is Lipedema?

Despite affecting an estimated 11% of women around the world, Lipedema is not yet widely known. Fat cells, (also referred to as adipose tissue) provide the human body with both cushioning and insulation. Lipedema affects the accumulation of these fat cells in the body, resulting in bulging, irregular fat in the affected areas. The legs are the most commonly affected area, but sometimes spreading occurs in the torso, and in many cases, excessive clustering of fat cells is noticed in the arms as well. Regardless of the affected area, the symptoms are equally debilitating, and unfortunately, these fat cells are equally resistant to both diet and exercise programs. 

Unlike Lymphedema or general obesity,  Lipedema has a tendency to affect both limbs equally and generally becomes more apparent over the course of time. Lipedema’s progressive nature makes getting a proper diagnosis and treatment imperative and extremely time-sensitive – as the disorder progresses so does the pain, immobility, and discomfort.

Getting a Lipedema Diagnosis Step 1: Symptoms Checklist

In addition to the characteristic disproportionate fat accumulation, there are specific physical signs and symptoms of Lipedema. Do any of the following Lipedema symptoms sound like something you regularly experience?

Lipedema Symptoms Checklist:

☑Tender skin that is sensitive to the touch, feels pressure when walking or climbing stairs, crossing your legs, or sitting for long periods of time.

☑Skin’s surface feels nodular and firm, like beans in a bean bag or rubber balls. 

☑Skin’s surface is uneven, with large bulges and valleys up and down. Areas that were traditionally thought of as cellulite are much more dramatic and bulging. 

☑Skin’s temperature is relatively cool.

☑Legs feel heavy and tired.

☑Swelling in the affected area (legs, arms), worsening during the day, and better at night after you’re able to elevate your limbs (such as laying in bed). 

☑Easy bruising.

☑Visible veins.

☑Disproportionate fat accumulation, not affected by calorie restriction. Think extreme “pear-shaped” body. 

☑Feet and hands are unaffected by weight gain or swelling. As a result, there’s often a “cuff” at the ankles or wrists. 

Overall, Lipedema appears in a series of three stages. Do any of these sounds like you?

3 Stages of Lipedema:

3 Stages of Lipedema Infographic

If one of these stages sounds like you, and you checked off multiple items on the list above, you may have Lipedema, but it’s impossible to say for sure. The only way to know for sure is to get a proper Lipedema diagnosis, which in itself is an important process. 

Getting a Lipedema Diagnosis Step 2: Recognize Related Conditions

The diagnosis of Lipedema is made based on a clinical evaluation from a physician with specific knowledge and experience of the disease in combination with supporting tests that rule out other diagnoses. For this reason, it’s no surprise that Lipedema is a poorly recognized and under-appreciated disease in the United States – it takes an expert to recognize it, and finding an expert is tough if you’ve just learned about it yourself! The recognition of characteristic features of Lipedema and the elimination of other conditions that can be confused with Lipedema is the key to the proper diagnosis. We know it can be overwhelming, but knowing as much as possible before speaking with your doctor or seeking out an expert is another tool in your pocket to ensure you receive the care you need. You can read more about related conditions here, but it’s important to know the main points to advocate for yourself.

Below are conditions that can be confused with and can affect people with Lipedema. Because there can be so much overlap in appearance and symptoms, only clinicians with the training and experience to diagnose and treat these conditions can differentiate them. If you’re diagnosed with one of these conditions but you feel strongly that the diagnosis is incorrect, these summaries can help highlight why. 

While Lipedema typically does not have to swell in the patient’s feet and hands, Lymphedema will always have swelling in these areas. Lipedema symmetrically affects both legs equally, but Lymphedema usually affects one leg or arm and leaves the other leg or arm unaffected. There may be overlap in these two diseases and treatments can be similar, but some patients only experience Lymphedema after their Lipedema progresses into later stages. 

Obesity is much more common than Lipedema, and the most common misdiagnosis for it. While obesity is the accumulation of excess fat, stored centrally inside the abdomen or belly, Lipedema is the excess accumulation of fat out of proportion on the extremities, and typically not in the abdomen or belly. There may be overlap in these two conditions, too. In fact, sometimes obesity develops as a secondary condition due to the mobility problems caused by the Lipedema. So, not only is lipedema often misidentified as just obesity, but obesity can also complicate Lipedema, and be a symptom of it. 

The symptoms of Lipedema and venous insufficiency are similar. They both cause heaviness, tenderness, fatigue, and swelling. They often both have discoloration in the shins, easy bruising, and prominent veins. In more advanced cases of venous insufficiency, not only does venous lymphedema develop, but a secondary Veno- Lipo- Lymphedema develops. With the overwhelmed lymph circulation, the ability to clear fatty acids from the affected tissue is compromised and a secondary fat accumulation occurs. In many cases, the best way to differentiate between lipedema and venous insufficiency and veno- lipo-lymphedema is to have a specialized standing venous Doppler ultrasound to check for venous reflux.

Conditions Like Lipedema

Getting a Lipedema Diagnosis Step 3: Find a Lipedema Expert 

Now that you’ve reviewed the signs and symptoms of Lipedema, determined that you identify with at least some of them, and you’ve familiarized yourself with other commonly related diagnoses, it’s time for the final step – finding a Lipedema specialist and getting tested! Each Lipedema doctor will have their own preferred method of diagnosing their patients and typically will include a physical exam, patient questionnaires, and then additional testing and ultrasounds to further support the physical exam. 

Getting a Lipedema Diagnosis Step 4: Diagnostic Testing 

Below are the different tests you may experience during this time, and it’s important to keep them in mind as you select your doctor. Moving forward, thoroughness will be your best friend; we highly recommend “interviewing” different Lipedema experts to find someone you trust, someone who can provide at least some of these diagnostic tests, and someone who is well versed in treatment options.

Note: There is no single test to diagnose Lipedema. Tests, however, are important to rule out a related disorder.

Stemmer’s Sign Test:

The Stemmer’s Sign is the inability to pinch the skin between the toes or fingers. As mentioned in our last section, Lipedema in advanced stages can be complicated by secondary Lymphedema and may have a stemmer’s sign. This test can help Lipedema experts determine if this is the case for you. 

Venous Doppler Ultrasound:

A Venous Doppler Ultrasound is a very useful test for the diagnosis of Lipedema. Lipedema has many similarities to venous insufficiency (as explained above), so this can help rule out or confirm venous insufficiency.  The Venous Doppler Ultrasound can readily detect venous insufficiency if done properly and by having the patient stand while completing it. Unfortunately, most hospital vascular labs complete Venous Doppler Ultrasounds with the patient lying down, While this is the typical way to find Deep Vein Thrombosis (DVT), it is definitely not a successful method to detect venous insufficiency. A standing venous Doppler ultrasound is a painless, non-invasive, and inexpensive test that provides a lot of useful information about venous circulation. The Doppler ultrasound not only helps determine the presence of underlying venous problems, but it also gives critical information for managing Lipedema. If venous insufficiency is present, it is important that treatment is given as the resulting increased venous pressures can greatly aggravate Lipedema.

Lymphoscintigraphy:

This is generally only used in complicated cases, where clinical diagnosis is not clear. This is a nuclear scan that assesses the lymph system. It may come back as normal in patients with Lipedema and may show the characteristic “corkscrew” changes with Lymphedema. In most cases of Lymphedema, lymphoscintigraphy shows delayed uptake. So lymphoscintigraphy can be very helpful to determine if and how significant a role lymphedema is playing in an individual’s symptoms, especially when there are widespread issues of swelling in the body. 

Life After Diagnosis

First – congratulations! We know the road to diagnosis is emotionally draining, physically painful, and it can feel lonely and discouraging. The time and research it takes to make it to this point are huge, and you should be proud of yourself and the courage it takes to be your own advocate. Our hope for all women with Lipedema, whether they are our patients or not, is that we can provide valuable tools and knowledge so that more women can make it to this point and take the next step in living a more mobile, healthy, and enjoyable life. 

After going through the diagnosis process and receiving a positive Lipedema diagnosis, most patients are relieved, overjoyed, and validated by their endless search. After years of living with the private struggle and knowledge that “something just isn’t right” in their body, putting a name to the issues is a huge win. And after an official diagnosis, there are many different treatment paths available to you! A treatment plan should be discussed and developed between you and your Lipedema doctor, but you can read more about non-surgical and surgical options that we recommend to our patients. While these will always depend on specific cases and patient needs, it can give you an idea of what options may be available to you. Good luck! 

Lipedema continues to be a poorly identified condition where diagnoses are often avoided by US physicians. Identifying lipedema involves a clinical evaluation from a medical physician with expert knowledge regarding this condition. Two factors that are critical in finding a proper lipedema diagnosis include identifying an abnormal fat deposition in impacted areas and identifying symptoms of lipedema.

Obesity vs Abnormal Fat Accumulation

Far too often Lipedema is misdiagnosed as obesity. The abnormal fat deposition of lipedema is very different from obesity. Individuals with lipedema typically accumulate disproportionate fat in soft tissue just below the skin on the arm and legs. Individuals with obesity typically see a proportional increase of fat issue around the body but it is more concentrated inside the abdomen, called visceral fat. Individuals with lipedema will instead see a much greater fat accumulation be around extremities and not the abdomen which is described as disproportionate when compared to the rest of the body.

Lipedema can be identified with five different types of the condition depending on where the fat tissue is found predominantly. Type I identifies lipedema with fat pockets around the buttocks. Type II identifies lipedema with fat around the hips and thighs in addition to the buttocks. Type III identifies fat tissue around the calves, ankles, and thighs. Type IV identifies lipedema with pockets of fat tissue on the arms while Type V is lipedema with fat tissue found exclusively on the calves and ankles.

Symptoms of Lipedema

It helps to properly identify lipedema by recognizing many of its common symptoms. Individuals who have been properly diagnoses often have tender skin that is sensitive to walking and pressure. Limbs affected by lipedema appear to be “fluffy” and have a rubbery feel to them. The skin tissue will eventually harden and feel like beans in a bag. Skin tissue will also lose elasticity and become uneven. The overall temperature of the skin will cool. Your legs will begin to feel heavy and lead to overall fatigue. Individuals with a newer development of lipedema will see that swelling will be frequent during the day and subside at night. Individuals who have been dealing with lipedema for years will notice that the swelling will progress at later stages. Finally, individuals with lipedema will also notice visible veins under the skin on impacted limbs and will bruise easily.

Seek Your Proper Treatment

Properly identifying symptoms of lipedema and observing abnormal fat distribution will help with diagnosing this condition. Physicians now use tests to help with their diagnoses such as venous Doppler ultrasound and lymphoscintigraphy. Additional research will help with properly identifying lipedema from obesity and other fat-related conditions. Contact us for your proper lipedema diagnosis.

Lipedema and Lymphedema Webinar: Mythbusting and Case Controversies
 
Join this lively and interactive discussion with Dr. Wright and other experts!
 
Jun 11, 2020 08:00 PM
 

We miss you and can’t wait to see you again soon…

We would like to take this opportunity to provide an update on how we will proceed with seeing patients.  First, it is important to understand that while St. Charles County has authorized the re-opening of most businesses, this is not a green light to go back to “business and usual” and disregard safety measures such as observing social distancing rules, staying six feet apart, wearing a mask, hand washing, and other safety protocols.

Our plan is to resume patient care cautiously by following state and local municipality regulations, and St. Charles County Health Department requirements.  We are also following the recommendations of the CDC (Centers for Disease Control), AMA (American Medical Association) and the guidance from the  AVLS (American Venous and Lymphatic Society), ACCS (American College of Cosmetic Surgeons), and ACP (American College of Physicians).   

Dr. Wright continues to receive updates several times a day from BJC, SSM, and Mercy Hospital Systems and he is watching for a consecutive fourteen day decline in the number of COVID-19 cases in St. Charles County, St. Louis County, and the City of St. Louis to determine when it will be safe to resume cosmetic and aesthetic appointments.

We are very confident in our ability to offer our patients lipedema treatment in a tightly controlled medical office and surgery center, where our safety protocols to protect our patients and staff far exceed those in a salon, day spa or med spa without onsite medical supervision.  Because we limit the number of surgical procedures performed each day in our private surgery center, we are able to provide the highest level of safety which far exceeds standards in other surgery centers that see 10+ patients per day.    

We will begin seeing cosmetic surgical patients the week of May 18 and phase in some cosmetic vein patients as our schedule and staffing allows.  We understand your eagerness to resume aesthetic and cosmetic treatments; however, most of these procedures (microdermabrasion, IPL,  injectables and fillers) involve treating the face, which makes these treatments extremely dangerous for our staff to perform and the patient receiving the treatment due to the close proximity required to perform these treatments.    We will resume these treatments when staff members that perform them feel it is safe for them to do so or as Dr. Wright’s schedule allows (injectables and fillers).

To maintain the six-foot social distancing requirements, we will be scheduling staff to work on certain days and limiting the number of in-office appointments each day.  We will only schedule certain types of appointments on specific days.  We will also not overlap appointment times so that patients do not come in contact with other patients.  We will be prioritizing patients that had appointments in March, April, and May based on the type of appointment and treatment.  We will continue to offer patients virtual appointments for consultations and some medical appointments.

For the foreseeable future, we have initiated the following additional precautions for patients coming into the office.

come to the office If you are experiencing any cold or flu-like symptoms, if you have been exposed to anyone that has symptoms or has been diagnosed with COVID-19.  Symptoms include:

call the office (636-397-4012) and let us know that you have arrived.  We will ask you some screening questions and a staff member will meet you at the building entrance for a temperature check.  If you have a temperature over 100° or if we observe symptoms that are of concern, you will not be allowed in the office for your visit.

Still unsure if you have Lipedema? Worried about all the unknowns of seeking treatment? You’re not alone! Meet Cat, one of the numerous women with lipedema, Dr. Wright’s patient who travels from Austin, Texas to St. Louis to complete her five scheduled lipedema surgeries. Cat is a writer, a women’s health advocate, and has a passion for documenting her journey and helping other women through it. As long as she can remember, Cat has struggled with her weight. She was never considered an obese child or teen, was active in sports from a young age, and trained and ran half marathons as an adult. Still, though, she found herself struggling with her weight and living with debilitating pain. She spent her summers avoiding the outdoors (because that meant she had to wear shorts or be miserable), never participated in beach or pool trips, and lived a daily struggle of physical and emotional pain. 

Not knowing any different, her family explained her issues away, helplessly insisting that she naturally had a “pear body shape”, which ran in her family. She bruised constantly, which was diagnosed as anemia. While she is slightly anemic, Cat has reported that her bruising and painful-to-the touch legs have improved drastically after only two surgeries on her lower body. After years of doctors telling her she was overweight and needed to continue to cut down her calories, Cat was at a loss. Below are her experiences, which she’ll continue to update through the remaining surgeries and recovery process.

Lipedema Ruined & Saved This Fat Girl’s Life

In her first blog post related to Lipedema, Cat writes of her journey towards diagnoses, which ultimately led her to Dr. Wright’s office in 2019.

When the Solution is More Painful Than the Problem

After her initial consultation and diagnosis, Dr. Wright and his team put a treatment plan together for Cat. Her first surgery was in December 2019, and this article outlines what she experienced before, during, and after treatment.

Stay tuned for more! Cat recently completed her 2nd surgery on her upper legs and will be reporting back to detail her experiences. Lipedema is estimated to affect 10% of all women across the world – you’re far from alone, and we’re here to help you through this process to a more fulfilling, healthy, and pain-free life. 

Dr. Wright and Karen Herbst discuss COVID19 and Lipedema. What would increase a women’s risk of developing COVID19?

On the tv show The Doctors, lipedema has once again come up. This time it’s with someone who’s big behind has made her a star. This isn’t the first time I’ve run into Raylynn on the internet. I came across her picture elsewhere, where people were less kind about her body type. I went to her Instagram account and could instantly tell what she had was lipedema. It’s just so obvious with the tiny waist and flat stomach. You can see her lipedema arms getting slightly bigger now too. Anyhow, on this The Doctors segment, they have plastic surgeon Dr. Andrew Ordon do a brief exam on Raylynn and he diagnosed her with this horrible condition. I’m actually excited about this particular diagnosis because she’s an internet celebrity and this is going to make some rounds. Her fans are going to talk about this episode thus talk about lipedema. I feel we’re one step closer to the right direction.

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