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Patient Guide to Self-Diagnosing Lipedema and Lipo-Lymphedema

By: Lindsay Davey, MScPT, MSc, CDT  
Last Updated: July 10, 2018
Editors: Ryan Davey, PhD and Lindsay Davey, MScPT, MSc, CDT

Patient Guide to Self-Diagnosing Lipedema and Lipo-Lymphedema
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Lipedema (or “lipoedema”) is a chronic condition that causes an abnormal accumulation of fat in specific areas of the body. This fat is accompanied by fluid swelling and other changes that may eventually culminate in lipo-lymphedema.

Individuals with lipedema are often misdiagnosed as simply being overweight, or their condition is mistaken to be a different swelling condition know as lymphedema.

But lipedema is its own distinct condition, and a non-trivial one. Lipedema is a chronic and progressive ailment with unique health implications. It requires ongoing symptom management to ease discomfort and prevent progression to more advanced stages, including lipo-lymphedema (more on this later).

A “typical” sufferer of lipedema appears to have a disproportionately overweight lower body when compared to their upper body. But patients with lipedema are not always “typical”, and abnormal accumulation of fat is only the most obvious of the symptoms. Since it is a progressive condition, symptoms will also worsen and change with time.

Lipedema is surprisingly common, but not commonly known. If you’ve made it to this web page then you probably have some idea about what it is, and may have read a bit about it on Wikipedia or on some other online resource. With this article I hope to offer you much more:

  1. An understanding of the biology underlying the condition
  2. How to self-diagnose lipedema and discuss your findings with your family doctor
  3. An understanding of how your symptoms may progress with time if they are not managed effectively

If you think you may have lipedema you can learn how to best manage it and prevent further progression of your symptoms here: Patient Guide: Treatment of Lipedema and Lipo-lymphedema. Unsure if you have lipedema? Keep reading below.

What does ‘classic’ lipedema look like? What are the symptoms?

The classic presentation is a woman with a small upper body and a disproportionately fatty lower body. But there is more to it than this. There are also non-classical presentations, symptoms that depend on stage of disease progression, and symptoms that are shared with other conditions. Let’s begin by taking a closer look at the classic symptoms:

Classic symptoms of lipedema:

  1. Lipedema occurs almost exclusively in women. But it has also been observed in men with hormonal imbalance or liver disease (Ref 1).
  2. Lower body is affected. It usually presents as excessive fat accumulation in the lower body, starting at the top of the iliac crest (the bones at the waist), while the upper body remains thin. If the upper body appears proportionately obese, it is not likely to be lipedema. However, lipedema has also been shown to affect the arms in about 30% of these patients, and in these cases, it usually affects the upper arm (ref 2).
  3. The ankles and feet are not affected. The feet do not accumulate fat as with regular weight gain (BUT they can be affected by secondary swelling – more on this below), and a collar of fat can often be seen just above the ankles (see Figure 1).
  4. Fat accumulation is symmetrical. Both sides of the body are affected, just like with normal weight gain. There is not a common pattern to fat accumulation. It can make the legs look like columnar trunks, or lumpy. Deposits of fat can also appear just below the knee.
  5. Fat feels abnormal and painful. Unlike normal fat accumulation, fat areas resulting from lipedema tend to be very tender if you apply pressure, and are easy to bruise. The fat deposits can also hurt for no apparent reason, and the skin can become less elastic feeling
Woman with lipedema showing ankle collar of fat

Figure 1: Lipedema in a patient showing a typical presentation including disproportionate lower body accumulation of fat compared to the upper body, and a collar of fat at the ankles (photograph reproduced from ref 3).

 

But the symptoms of lipedema can be quite a bit more complicated…

Lipedema can also affect men in some cases. It is also not a static condition, but a progressive one. This means that the symptoms of the disease will typically start out mild and will gradually change and worsen if preventative steps are not taken.

Early lipedema can be very difficult to differentiate from simple weight gain in otherwise healthy individuals, whereas in advanced stages of lipedema, the condition can begin to take on additional characteristics including symptoms of the chronic swelling condition known as lymphedema. So the ease of correctly diagnosing lipedema changes with stage of presentation. More on this below, but first it is useful to understand what causes lipedema and its progression.

What causes lipedema?

The underlying cause of lipedema remains largely unknown.

Symptoms usually first begin to arise around the time puberty, but can also occur after pregnancy or during menopause, or during another life event that triggers significant hormonal changes. This implies a connection between onset and hormonal changes, which is not surprising given the role that female hormones (estrogen and progesterone) play in normal fat deposition. Fat cells (called adipocytes) have estrogen receptors (proteins in the cell membrane) that bind estrogen and direct cell behaviour.

Why do some women get it and others do not?  There appears to be a strong hereditary component to the disease. Women with close relatives that have lipedema are more likely to develop it themselves. 15% of patients with lipedema have a family-history of the disease (ref 4).

Lipedema is a progressive condition and this makes it more complicated to diagnose.

So do more advanced cases just have more fat?

Yes, more advanced cases typically have more fat accumulation. But there are other important changes that occur as well. To understand what happens as lipedema progresses, we need to know a little bit about the physiology of fat and the underlying abnormalities caused by lipedema.

What causes lipedema to progress?

Here’s a brief explanation of how fat cells work, and how lipedema might be disrupting normal function to create a progressively worsening condition. While the full details of this condition remain unclear, a general picture has emerged that helps explain the cause and progression of this condition. As you will see, excess fluid accumulation plays a critical role:

  1. Fat is composed of cells that require a lot of blood flow. Fat cells (known as adipocytes) synthesize, store, and metabolize (release the energy from) fat. With weight gain these cells do not increase in number, but rather increase in size. Fat cells are important and active in maintaining the balance of fats and carbohydrates in the blood, and they have a lot of blood capillaries feeding them (more so than even muscle). Thus, there is a lot of fluid exchange that occurs in fat.
  2. Fat tissue is under constant pressure to maintain fluid balance or swelling will result. A large amount of fluid is continuously entering fat tissue, and likewise, must be removed through the venous system (veins and venules) and lymphatic system (lymph vessels and lymph nodes). These systems work in tandem to continuously remove the accumulating fluid. If these systems are insufficient, swelling will result. For example, the chronic swelling condition known as lymphedema results from lymphatic damage or abnormality (learn more here).
  3. Fluid circulation in patients with lipedema appears to be abnormal, which may promote swelling. The blood vessels feeding the fat deposits in individuals with lipdema have been observed to be fragile and leaky, as are the small lymphatic vessels, suggesting that the fat tissue in lipedema patients may be prone to fluid accumulation (ref 1). There also appears to be less elasticity in the skin of individuals with lipedema. This would further increase their susceptibility to excess fluid accumulation since tension created by elasticity in the skin acts to apply pressure on the underlying tissue, and this pressure helps fluid find its way into the lymphatic system and also helps it pump through the venous system upon muscle contraction. An inability to maintain fluid balance in fat tissue may be a core driver of lipedema. This would also explain why lipedema is more often observed in the lower body than the upper body:
  4. Fat tissue in the lower half of the body is under greater pressure to maintain fluid balance than the upper body, and so is more prone to swelling. Gravity increases the accumulation of fluid in the lower body, especially in fat tissue. This increases the demands on the venous and lymphatic systems that drain fluid from this area. Fluid accumulation caused by gravity is the reason why even in people with healthy blood and lymphatic vessels, their feet can have a bit more volume at night than in the morning, and can swell with prolonged standing or sitting. So fat tissue in the lower body is disproportionately prone to swelling, and lipedema patients appear to have fluid circulation abnormalities that could exacerbate this swelling. This would suggest that patients with lipedema are more prone to accumulate excess fluid in their legs compared to their upper bodies, and more prone to leg swelling compared to people without lipedema.
  5. Chronic swelling appears to promote fat accumulation. As you can infer from the above, lipedema appears to cause abnormal fluid accumulation, and fat tissue in the lower body is particularly susceptible to it. Could chronic fluid accumulation in the legs of lipedema patients cause abnormal fat deposits to accumulate? This hypothesis seems plausible, although as you will see below, it is a bit of a chicken-and-egg problem. Swelling and its associated inflammatory processes have been shown to promote fat accumulation: chronic excessive fluid accumulation in tissues has been shown to lead to lymphatic insufficiency, which in turn is linked to a growth in the size of fat cells, and damage to fat tissue. This has been observed in patients with late-stage lymphedema, a lymphatic disorder that causes chronic swelling.
  6. Fat accumulation promotes even more fluid accumulation. As a tissue becomes larger, in particular fat tissue, it draws more blood flow. Unfortunately, the lymphatic drainage system has an upper limit on how much fluid it can remove from a tissue. In fact, it has been suggested that chronic obesity alone can initiate the onset of secondary lymphedema – a chronic swelling condition caused by excess fat deposits overburdening (and even damaging) the delicate vessels of the lymphatic system. This means that excessive fat accumulation caused by lipedema will increase fluid accumulation in the lower body, and if it exceeds the capacity of the local lymphatic system, swelling will result. This is why in late stage lipedema (also known as lipo-lymphedema) excess fat is present alongside significant swelling.

While there is still a lot of research needed to understand the underlying biology, the above observations suggest that a vicious cycle may be at work in lipedema sufferers. In short, fat in the lower body is naturally susceptible to excess fluid accumulation (swelling), even in normal adults. But this susceptibility is made worse in lipedema patients who have excess fat, and also small vessel abnormalities. Unfortunately, prolonged fluid swelling is linked to further fat accumulation, which in turn causes more fluid accumulation – creating a progressively worsening condition. This vicious cycle appears to be one explanation for why the disease progressively worsens without effective management, and why this worsening doesn’t just result in more fat accumulation, but also fluid swelling.

This also offers a rationale for including compression garments in the ongoing management of lipedema. Although compression garments cannot reduce the amount of fat already present, they can help decrease fluid accumulation and prevent further disease progression. Click here to learn more about using compression garments for the treatment of lipedema. In the absence of getting personalized advice from a CDT therapist, there are a number of more “generic” garments that appear to be reasonable options, for example: the Bioflect Compression Legging offers a mild level of compression (12-17 mmHg), which may be a good place to start for individuals who have never worn compression before – see Figure 2 below.  [Small disclaimer: if you purchase a garment through this link we may receive a very small fee which we use to support our blog. But feel free to look around for a garment that suits you best. Better yet, ask a local CDT therapist for personalized advice before purchasing a garment.]

Bioflect lipedema compression leggings.

Figure 2: An example of a generic lipedema compression garment by Bioflect which is high-waisted, full-length to the ankle, and offers a low-to-moderate level of compression.

Lipedema and lipo-lymphedema symptoms and stages – a more complete picture

The symptoms of lipedema change with disease progression. At advanced stages, excessive fat accumulation and progressive lymphatic system insufficiency and damage induces secondary lymphedema and fluid accumulation in the area. This combined condition known as “lipo-lymphedema” exhibits symptoms of both lipedema and lower-limb lymphedema, including swelling below the ankles and in the feet, that is otherwise not normally observed in lipedema.

Conversely, patients with advanced cases of untreated lymphedema can begin to see tissue hardening due to fibrosis, loss of skin elasticity, and fat deposition. This means that advanced cases of both lipedema and lymphedema can share similar symptoms. To further complicate diagnosis, prolonged obesity in otherwise normal individuals also appears to induce the formation of secondary lymphedema, and the associated symptoms.

So is a patient suffering from lipedema, advanced lipedema (lipo-lymphedema), advanced lymphedema, obesity-induced secondary lymphedema, or simply obesity? To aid in the correct diagnosis (in particular for more advanced cases) we need to understand a patient’s symptom history and how their symptoms have changed with time. In other words, to accurately diagnose lipedema we need to understand a patient’s symptom history within the context of the 3 stages of the disease (ref 1):

Signs and symptoms of the three stages of lipedema:

1. Stage I Lipedema

At this stage appearance alone cannot be used to distinguish between lipedema and a healthy individual that is carrying more fat in their legs. But patient appearance in conjunction with the other characteristics of Stage 1 lipedema can be used to effectively rule-in or rule-out the condition in many cases.

Characteristics of Stage I Lipedema:

  1. Legs appear to have excess fat that is disproportionate to the upper body, and weight loss does not decrease fat in the affected area. This fat affects both legs to the same extent, and is evenly distributed from the hips down to the ankles. Pads of fat can appear above and below the knees, making their normal shape hard to see.
  2. There is no excess fat or swelling in the ankles or feet.
  3. Skin appears healthy and is not discoloured.
  4. Fat is painful with pressure. Fat deposits caused by lipedema will often feel painful if pressure is applied, unlike for healthy women with fatter legs or women with lymphedema, neither of whom would typically find a similar pressure to be painful.
  5. Fat deposits may hurt spontaneously in some patients even without pressure or without being touched at all. This pain is not typically responsive to over the counter pain medication.
  6. Fat is abnormal. The fat deposits caused by lipedema are abnormal in other ways as well. The tissue is more susceptible to bruising do to a microvascular fragility in the tissue (blue spots can appear after minor events), inflammatory processes (which in turn cause further complications), and bacterial infections of the skin (“cellulitis”). Although it is soft, the fat may feel different when compared to other areas of fat on the upper body, and may include small evenly dispersed nodules of fat.
  7. “Stemmer’s sign” is negative. This means that you are able to pinch and lift the skin on the top of the toes near where they attach to the rest of the foot. If Stemmer’s sign was positive, the flesh on the top of the toe instead feels solid and the skin can’t be separated. This test looks for the presence of swelling and fibrotic tissue in the feet, which does not occur in Stage 1 Lipedema. Stemmer’s sign is positive in cases of lymphedema where the foot is affected.
  8. There is no “pitting” when finger or thumb pressure is applied to the area of fat. This is another test for swelling. If thumb pressure leaves an indent which gradually fills in and disappears, this is a sign that the swelling is fluid in nature rather than due to fat deposits (see Figure 3).
  9. Some temporary swelling in the ankles or feet may occur at the end of the day, but with elevation or sleep it tends to disappear in Stage 1 lipedema.
Legs showing pitting edema, an uncommon symptom of lipedema

Figure 3: “Pitting” edema in a patient with congestive heart failure (photograph reproduced from ref 5).

 

2. Stage II Lipedema

Without proper care Stage I Lipedema typically gradually progresses to Stage II. Stage II has the same symptoms as the first stage, except:

  1. Fist-sized lumps of fat can begin to develop in the affected area.
  2. Fatty nodes can be felt easily. Instead of the fat feeling smooth, small fatty nodules can now be easily felt and are unevenly distributed in the tissue.
  3. The skin is uneven in appearance, with a textured look, and can be discoloured.

3. Stage III Lipedema (aka lipo-lymphedema)

Advanced cases of lipedema take many years to develop (one estimate suggests on average this may take 17 years, ref 1). Stage III lipedema is characterized by the following changes:

  1. Thick and hardened skin with some discolouration.
  2. Legs are no longer symmetrical. Large deformed lumps of fat have developed asymmetrically on the legs which can impede normal movement of the limb
  3. Lymphedema is present. Stemmer’s sign is positive, and the backs of the ankles and feet are swollen, indicative of the presence of fluid caused by a secondary lymphatic insufficiency that has developed. This swelling does not go away after a night’s sleep, and has become chronic lymphedema. If this lymphedema is not treated it will advance through the stages of lymphedema, further disabling the patient.

Given the variety of symptoms, how is lipedema commonly diagnosed?

Generally speaking, not very well, and not very often. Even though it has been reported that 11% of women suffer from the condition (ref 1), appreciation and understanding of the disease is still limited. In fact, we don’t yet know for certain what the true prevalence is; published estimates vary widely from 1 in 72,000 to 1 in 5 women (ref 6).

Since lipedema is not very well known, it is often incorrectly diagnosed as simple obesity, or as primary lymphedema (a congenital form of lymphedema that often affects both sides of the body). It also doesn’t help that there are no standard protocols or diagnostic tests to diagnose lipedema at this time.

Lipedema and lipo-lymphedema are most effectively diagnosed by physical examination with palpation combined with an examination of patient clinical history and family history, rather than through diagnostic tests (ref 1,6,7).  Family history can be helpful because lipedema does have a hereditary component; it is estimated that 15% of people with lipedema have a family member with it (ref 7).

How do I self-diagnose lipedema and lipo-lymphedema, and how can I get a formal diagnosis?

First off, if you have unexplained swelling that has appeared very recently please see a doctor immediately. There are many potential causes for unexplained swelling, and some of them can be very serious.You should also see your family doctor to discuss any longstanding issues you’ve been having with swelling.

As you can see from people’s comments below, it can be difficult for lipedema sufferers to get a correct and timely diagnosis. Unfortunately there is no simple test, so diagnosing it often requires a bit of detective work.

If you suspect you do have this condition, use the strategy I outline below to attempt to self-diagnose it. Many family doctors have limited knowledge of lipedema and so your self-investigations could give you a big leg up on getting a formal diagnosis. A self-diagnosis obviously can’t replace a formal diagnosis by a knowledgeable health professional, but if you can speak effectively about your symptoms you may be able to better direct your care and get the diagnosis you need. Alternatively, seek out a health professional knowledgable about lipedema directly if you  can.

Here’s how you can self-diagnosis lipedema and lipo-lymphedema, as well as effectively seek out a formal diagnosis:

  1. Find out if you have a family history of the condition.
  2. Familiarize yourself with the stages of lipedema described above and the associated symptoms.
  3. Investigate your symptoms and write them down. Which symptoms above are you currently experiencing? This includes feeling for textural differences between the fat in your affected area, and fat in other areas of your body. Do they feel different? Do your symptoms fit with one of the stages of lipedema above? Keep in mind that it can be hard to do a good objective assessment of one’s own body (even for health professionals), and especially without experience.
  4. How have your symptoms changed over time?
  5. Write down a timeline for your symptoms – when did you first notice something developing? What symptoms did you experience then, how have your symptoms progressed since then, and over what tim period? Do you have other symptoms that don’t fit into the above description? Make a record of those too.
  6. After doing the above you may be able to make a reasonable attempt at ruling-in or ruling-out the possibility that you have lipedema. The tricky part comes from the fact that there are other conditions that can cause similar symptoms, and this is why you should definitely discuss your findings with your family doctor.
  7. Discuss your symptom timeline and family history with your doctor, and let them know that you believe you have lipedema. Be patient with your physician, as they may have very limited knowledge of lipedema and even less experience seeing it first-hand. Conversely, they may believe your symptoms to be attributable to another condition altogether, and not in fact due to lipedema. In turn, you should be open to the possibility that you do not have lipedema, and that your symptoms are attributable to something else.
  8. If your doctor is stumped by your symptoms or feels they lack sufficient knowledge about lipedema, you may wish to ask for a referral or seek out a second opinion.

If you suspect you have lipedema you can learn about how to manage it and prevent further symptom progression here: Patient Guide: Treatment of Lipedema and Lipo-Lymphedema.

Sharing is caring! Please feel free to share your experiences, questions or comments below.

References:

  1. Földi E., and Földi M. Földi’s Textbook of Lymphology. 3rd Germany: Elsevier GmbH. 2012 p364 – 369.
  2. Herpertz U. Krankheitsspektrum des Lipödems an einer lymphologischen Fachklinik – Erscheinungsformen, Mischbilder und Behandlungsmöglichkeiten. Vasomed 1997 5:301–307.
  3. Buck D.W, Herbst K.L. Lipedema: A Relatively Common Disease with Extremely Common Misconceptions. Plast Reconstr Surg Glob Open. 2016 Sep 28;4(9)  link to article
  4. Child A.H., Gordon K.D., Sharpe P., et al. Lipedema: an inherited condition. Am J Med Genet A. 2010. Apr;152A:970–6. https://doi.org/10.1002/ajmg.a.33313
  5. Trayes K.P., Studdiford J.S. et al. Edema: Diagnosis and Management. Am Fam Physician. 2013 Jul 15;88(2):102-10. https://www.aafp.org/afp/2013/0715/p102.html
  6. Reich-Schupke S., Altmeyer P., Stucker M. Thick legs – not always lipedema. J Dtsch Dermatol Ges. 2013 Mar;11(3):225-33. https://doi.org/10.1111/ddg.12024
  7. Weissleder H., Schuchhardt C. Lymphedema diagnosis and therapy. 4th Germany: Viavital Verlag. 2008 p294 – 323.

37 Comments

  1. lorithompson21@aol.com lorithompson21@aol.com says:

    I live in Illinois. My doctor, nor any other doctor here seems to  have  heard of this , much less believes it. I even showed my doctor a series of photos at different ages and stages and he basically said this  was a “made up disease to help fat people feel better and just give money to the plastic surgeons who do liposuction.” Does anyone know a doctor  in Illinois that is familiar with Lipedema???

  2. Maria Maria says:

    Hi Lori
    I’m in the same boat as you. I can’t believe how nobody knows about this horrible disease. I was diagnosed with lymphedema by a vascular doctor that after doing tests on my veins and arteries they came back fine but I was still swelling bad and my legs would get heavy and hard in the changes of temperature. I’m not heavy, never been obese but I recall always having this huge legs with what I thought was cellulite. Never could wear a pair of short shorts because i was ashamed of my legs. This doctor referred me to a physical therapist that treats lymphedema patients. Supposedly is all about living with the disease and doing things to manage it. Getting massages at least once a week for lymphatic drainage. Good luck  

  3. Lindsay Davey Lindsay Davey says:

    Thank you Maria, for sharing your story. These comments are so helpful in letting others know they are not alone in their navigating of this condition, and its management. I wish you all the best Maria, and thank you again for your contribution.
    Lindsay Davey

  4. Jill Jill says:

    I was diagnosed in 2015 by a vein doctor in Naperville, IL. My appointment was less than 15 minutes, mind you, but I did get the “official” diagnosis of bilateral edema (u.s. health insurance still doesn’t have a lipedema code). I was prescribed compression stockings. MLD not a big help for me because I didn’t have a lot of fluid.

  5. Lindsay Davey Lindsay Davey says:

    Thank you for sharing Jill!
    Lindsay

  6. Jan R. Jan R. says:

    Jill, I live in Naperville. I’m wondering who was the doctor? My doctor doesn’t think lipodema is a thing and I suspect that I’m at stage 3. 

  7. Ann Ann says:

    For 10 years I was told that I just needed to lose weight but even when I lost weight I continued to have swelling in my legs. After refusing to except that I just needed to lose weight, I was sent to a vascular physician. He diagnosed me with leaky vein syndrome and also felt that something else was going on with my legs and referred me to a lymph edema therapist. I had surgery on both legs to take care of the vein issue. I did intense wrapping which lead to tendinitis in both legs and I was having more pain in my legs. I went to see a lymph edema doctor who finally gave me the diagnosis of lipo- lymphedema. She spent 1 1/2 hours taking my history, assessing my compression garments and examining my legs. She recommended HCG, which there is no research on how this impacts fluid. I did 2 rounds and had great results with the fluid in my legs. I could go up/down stairs easier and my legs felt so light. I also have shapely legs again but continue to struggle with swelling in my ankles. There needs to be more research done in this area and physicians need to not just say ‘ you just need to lose weight.’ 

  8. Lindsay Davey Lindsay Davey says:

    Thank you for your comment Ann. I am pleased to hear that after a long road of complex edema and pain, you found at least a partial solution with the help of a physician who provided the lipolymphedema diagnosis. Indeed, more research needs to be done on HCG and its potential to help individuals in your situation. I hope in the meantime with continued use of your compression garments, exercise, and manual lymphatic drainage, the residual swelling component that persists at your ankles will further improve. Wishing you all the best Ann, and thank you for your contribution on the conversation surrounding the various concurrent conditions that may be at play in individuals with a body weight challenge. I am sure this will encourage others to seek the counsel of a lymphedema therapist/lipo-lymphedema experienced practitioner who can provide other ideas for management. Sincerely, Lindsay Davey

  9. Doris. Diedrich Doris. Diedrich says:

    What is. HCG ??  

  10. Ryan Davey Ryan Davey says:

    Human Chorionic Gonadotropin. It’s a hormone that’s produced during pregnancy, but it has found recreational use in bodybuilders (used in conjunction with other steroids) and in the HCG diet. The rationale for using HCG as part of the so-called “HCG diet” is scientifically questionable, although I don’t know enough about it yet to comment on it’s potential utility in cases of lipedema…

  11. Concerned mom Concerned mom says:

    I have a daughter who as a child was very thin.  When she started puberty we noticed her pants size starting to change.  By the age of 18-19, she stopped wearing shorts and stopped going swimming because her legs got so big.  She is going to be turning 29 and is so depressed by her lower part of her body,  that she told me all she wanted for Christmas was liposuction to take away her big legs.  I’m so worried for her.  Isn’t there anything she can do ?

  12. Lindsay Davey Lindsay Davey says:

    Hello Pamela,
    I’m so sorry to hear of your daughter and her long-standing troubles with her legs. If you think there’s a chance it is lipedema, or primary lymphedema, or a combination, I would encourage you to visit her family doctor and ask to be referred to a specialist. This might be a plastic surgeon, or a vascular surgeon, depending on where you are located and what specialists exist in your area. They will be able to comment about your question about liposuction, but importantly, diagnose what is going on so that your daughter can move ahead with the appropriate management strategies. If a diagnosis is make, or even in the meantime, I would recommend you reach out to the Lymphedema Association in your area, or other supports, so that you and your daughter can create a support network for yourselves. Not knowing what the condition is is often the most stressful and burdensome, so I strongly encourage you to advocate with her family physician so that she sees someone who can provide an informed diagnosis. Wishing you all the best Pamela. Sincerely, Lindsay Davey

  13. Patricia Stansell Patricia Stansell says:

    Hi to everyone
    As a child I had thin legs, but as soon as I hit puberty my legs started to accumulate fat. My upper body is the opposite, I wear x-small shirts. In addition, I have varicose veins. Now I’m 46, and my legs heart,  bruises easily, and are swelling. My Vascular doctor finally diagnosed me, but I don’t know were can I receive treatment. I live in Sarasota Fl. If anybody knows a place to go let me know 

  14. Lesa Lesa says:

    When I saw the picture in Figure 1 I said “Someone has taken a picture of my body”. I have recently been diagnosed with lipedema and primary lymphedema. I’m 63 years old. About 8 years ago I lost 50 pounds and had maintained that loss up until about 1 1/2 years ago when for some unexplained reason I quickly gained 10 pounds. My efforts to get back to goal weight were unsuccessful. My sister, a lymphedema therapist, had advised me to be evaluated but I wouldn’t listen. When both my knees started bothering me at the same time, I went to an orthopedic surgeon. His solution was knee replacement surgery. In discussing this with my sister, she convinced me to be formally evaluated before I considered surgery. Thank goodness I finally listened to her. She tracked down the lymphedema therapist in my area (Charlotte, NC). I requested a referral from my primary care doctor. The therapist diagnosed me and after 3 weeks of therapy, I have lost 3 inches in my legs and 5 pounds. Not that I’m thrilled with the diagnosis, I am thrilled to learn how to manage it. Most of all I’m happy to know why I couldn’t loose that wretched 10 pounds.

  15. Lindsay Davey Lindsay Davey says:

    Hello Lesa,
    Thank you for sharing your story. I am thrilled to hear that you have a sister with such lymphedema expertise! What a lucky thing that is, and so pleased to hear that you found someone in Charlotte, NC that has been such a help to you. When it comes to lipedema and primary lymphedema, knowledge really is power, as I am sure you know feel as well. As you say, knowing how to manage it can really make all the difference. Thank you again for contributing to this blog, so that others can read about your experience of the weight loss, then gain, knee pain, and subsequent diagnosis and treatment. Well done Lesa! Wishing you all the best, Lindsay Davey

  16. Maria Maria says:

    A few years ago, after giving birth to my 2nd child, I noticed my quad area bulky. I thought for a split second it was due to me working out. Then, I felt my other leg, and it didn’t have that bulk. I went to my Dr, even got a sonogram, only for her to say, “that’s how your fat will lay.” I continued on with life (and my hideous legs), and then got pregnant last yr (2017). My mass got bigger as I gained weight, but now it started to get numb, amd tingle, and bw tender to the touch. My gyno chalked it up to weight gain during pregnancy, and that it’ll leave once I give birth. I gave birth, tingle sensation, numbness, and minor pain still present. My GP sent me for a CT scan. The scan was normal, just showed extra fat. I was then referred to a physical therapist who has temporarily diagnosed me with lipedema. I am to start a manual drainage therapy, and possibly wear compression. My question is, does this therapy really work in decreasing the mass, and further preventing it from growing? I also read somewhere (on a site for treatment in the Netherlands) that compressiom does not help. Can anyone give me suggestions, tips, encouragement? I am trying to stay positive, and am hoping this will work.

  17. Lindsay Davey Lindsay Davey says:

    Hello Maria,
    Thank you for your story, and for sharing your unique experience that has resulted in a working diagnosis of lipedema. It does indeed sound like an interesting presentation, given that it differs somewhat between your legs (as far as I understood from your comment), and that it is localized in one area (the ‘mass’ you speak of). I gather between the scans and the various physician assessments that they have deemed this deposition or mass of excess fat as not being a lipoma? These can be quite common, and can appear in various places in the body, typically palpable under the skin, and usually in isolation (not on both legs in the same place). I do hope that compression and drainage massage works to help, and with true lipedema cases it certainly can. Wishing you all the best, and perhaps someone else has a similar story to share of their own unique lipedema experience/diagnosis and what has worked for them. Sincerely, Lindsay Davey

  18. Ana Pozzoli, PT, LANA-CLT Ana Pozzoli, PT, LANA-CLT says:

    Thank you so much Lindsay for your guide. I will be sharing it with our patients. 
    I don’t want to intrude in your presentation, but considering how many ladies have been misdiagnosed I want to share my knowledge in the field of Lymphedema, Lipedema and/orLipo/lymphedema for anyone that resides in the area of New Jersey. As a certified lymphedema therapist,  I have been treating Lipedema as well as lymphedema cases for years and can assist anyone looking for proper diagnosis. 
    Once again, thank you for this wonderful and dedicated topic. Much success to you and your future endeavors.

  19. Lindsay Davey Lindsay Davey says:

    Many thanks for your positive feedback Ana. Wishing you the very best as well!
    Lindsay Davey

  20. doctor faten doctor faten says:

    i am doctor faten,40 age having lipedema since puberty with two large lower limbs, i don,t recommend surgery at all, l,d like to know what is HCG diet

  21. Ryan Davey Ryan Davey says:

    Hi Doctor Faten,
    The HCG diet typically combines severe calorie restriction with injections of the hormone human chorionic gonadotropin. This diet was originally proposed in 1954. It was largely discredited 30 years later, and now it’s back to being trendy again. Despite all this time passing, there is still no reliable evidence that the HCG diet is more effective than simply caloric restriction alone, or that patients are able to keep the weight off. Further to this, it may increase the risk of certain health complications in some people. In summary, it probably doesn’t work, and likely poses a health risk for some patients. Personally, I would avoid it.

  22. Priscilla Priscilla says:

    How does one  locate a therapist with knowledge of lipedema so I can start working on mine?  According to the pictures I am still in stage one and want to learn how to stop the progression.  I live in Maryland.

  23. Lindsay Davey Lindsay Davey says:

    Hello Priscilla,
    I wish I had a person or organization to recommend. If you can connect with a CDT/CLT trained therapist in your area, they may have experience treating lipedema as well, and can offer insights for additional local resources for you. If you are at an early stage, then the Lymphedema Association of North America (LANA) has a Find a Therapist link, which might be a good place to start. For later stage cases, I often recommend they seek out a consultation with a vascular surgeon or dermatologist who has an interest in mixed edemas, wound care, and so on. Best of luck Priscilla!

  24. Lynda Chiavario Lynda Chiavario says:

    OMGoddess! Thank You! Thank you so very very much for explaining what I have seen and felt happening to me for two decades! I think I’m in Stage 2… I’ve had swollen lymph nodes in my left arm pit on & off for almost 20 yrs…probably because I have Epstein-Barr virus & Herpes… but according to the tests… “it’s not swollen”…:( Yes…it is. Period…it hurts if I press it…for over a decade! The glands on the left side of my throat are constantly swelling and ebbing… I have to take Valtrex…which suppresses my immune system, so I have this fine line I try to balance between an outbreak and mono symptoms… for about 2 decades.
    I have dieted on & off my entire life…& had an eating disorder…but the Irish side of my family… they’re all big women. I look just like them… Nothing would ever take the weight off my thighs…thunder thighs I call them! I have a big pocket at the knee that has always been there…since puberty…with these huge bat wing arms like my grandmother! Now I have noticed these little nodules under my skin all over…they are SO painful. My fat bruises SO easily…and it’s always been like that. I can just reach behind something where it’s a little tight and the next day I have a HUGE black and blue bruise on the inside of my upper arm! I bruise with a pinch. Not kidding. The fat cells and little nodules have become so painful. I can’t even stand my cat to walk over my leg… and I would have thought I was just obese… until I heard about this on a News channel one day. I am SO relieved to know that it’s not my imagination!… You described everything that is happening to me! And I’ve not been able to work since’99… I have severe Degenerative Disk Disease & chronic migraines… I’ve had carpal tunnel surgery in both hands & a cyst removed from my thumb joint from a cortisone shot for trigger finger. They took out a cyst the size of a pea! My skin does NOT like chemicals. So… among all these medical issues… that no one would even listen to me… now since 2006 I have developed Dermatofibroma… horrible fibrous bulbous very painful nodules on my skin… and now, just in the last year or two… I have developed Morgellons Disease. …and I have mental illness (BPD, anxiety, depression, PTSS, OCD)… and I don’t cut (the BPD)…I pick…it’s compulsive from anxiety. And of course, those are the two most itchy skin issues to have… I would have to cut off my hands not to pick at it! It itches because I have these very tiny white fibers coming out of those weepy places. They can be up to 6 or 8” long! That is NOT a hair! They are almost microscopic. And here is something you should note: I have noticed that there are more fibers and the sores are worse …where there is more fat! I have observed this over time… and I get a fibroma with even a scratch doing dishes… then it wants to get a big painful knot there…but if it’s a place with thin skin, it won’t take hold really. It takes years to get rid of them because they want to heal like a crater… it’s like there’s no healing from underneath… I’ll think it’s healed, & scratch a spot… there’s a huge pocket of blood underneath! Now I realize this is a long email… but I’m wondering if anyone else has issues like this Dermatofibroma as well? Morgellons? And does anyone have Herpes AND this Lipema? I should be a case study…lol… I have absolutely no idea how to stop this progression… as I said I believe I’m in Stage 2 and if I don’t sit with my feet up on and off through-out the day… my ankles swell… you can see the liquid settling there. And now I think I have Baker’s Cysts behind my knees! Ugh! I have been miserable for 40 years!…and I’m 53! And I cannot …absolutely cannot stand summer heat! I shop at night… I can’t take it… anyone else? So my question to the doctor…lol… having said all of this… is that I think the skin lesions are related to this Lipema…because it all seems to go together. Do you have any evidence or other patients who have developed these skin issues who have Lipema? Thank you for this summary… I’m going to print it out for my doctor! :) Feel free to contact me for more info… or to tell me info. I made an appt with a dermatologist but because of the new HMO Medicaid… I can’t get in until September… AND I have to drive an hour and a half to see someone! Oh, and my dad had terrible skin cancer…big tumors growing out like horns, & diabetes…(which I do not have…yet)… I didn’t have a chance…lol…Good luck with your research…I would love to be involved in this research.

  25. Lynda Chiavario Lynda Chiavario says:

    I know…I already wrote one… but as I sit here thinking about this disease … I am FURIOUS! I’m furious at the stupid stick skinny PE teacher who tortured me and wouldn’t stop the girls from bullying and picking on me in the locker room! I refused to take PE for half of the year!…opting instead to do my homework after school in detention every day for MONTHS! And then I quit the first chance I got at 16. I’m furious at the doctors who told me it was MY FAULT! Who wouldn’t listen to me when I said something is WRONG! They dismissed me with that stupid God Complex like I’m an idiot because I’m on Welfare & Obese! (Note: I graduated college Phi Theta Kappa…with a 3.945 GPA!) I have such horrible PTSS from all of it that I don’t even like to leave the house! I’m alone all the time because I prefer my sanctuary over all the assholes out there who don’t know how to be nice to someone just because they’re fat! And I’m REALLY FURIOUS with that ortho guy I just saw about my knee… who took one look at me and wouldn’t even feel where I was trying to show him it hurt. He had already seen the x-ray and walked in and saw my sores and my weight and would NOT touch me where I needed him to… said there was no difference even though it was totally swollen… and then proceeded to push Atkins on me and said I needed to lose weight! OMG! What a jackass! I got the second opinion and they said yes, arthritis… so what about the back of my knee?! Finally… she checks…she feels, she listens to me…and says…you “probably” had a Baker’s Cyst that ruptured. Wow….still wouldn’t order an MRI! Well… the first doc that was an ass…he got YELPED! ;) The torture I have been through because of these Thunder Thighs and Bat Wing Arms… you can’t even imagine. I am emotionally scarred for life… broken… damaged…and no one would help me. I am suicidal half of the time and have been since childhood. People are cruel… hateful and mean… and I’ve had to learn to live alone because of the BPD… They have no idea what they did to me… because of a disease that I could not help. This was a BIRTH DEFECT… like the other birth defects I was born with. Please continue this research…please. Maybe if other doctors will actually look at this problem seriously…maybe in the future young girls hitting puberty will be diagnosed properly instead of making them STARVE themselves! My mother and all of those stupid diets that NEVER worked… EVER. And making me feel like crap because I couldn’t do it. It made my eating disorder worse after I got away from her! Everything would lessen…EXCEPT my thighs and my upper arms! Girls like me are the obvious target of all the kids who have crap parents and didn’t teach their children not to make fun of other people. Thank you for this forum. Truly.

  26. JLS JLS says:

    Thank you for such a comprehensive explanation!!!
    I have been living the lipedema nightmare for 50 years with no explanation.
    I am angry that the medical field ignored us for so many years, but I am grateful that this new knowledge offers some hope of possible improvement.
    My lipedema was from birth, there was never a time I didn’t have it. I have the exact shape as your photo above.
    I wonder if there is a correlation with the fact that my mother was given a synthetic hormone drug called DES by Eli Lilly, while pregnant for me and got hit by a car.
    DES was later banned in the 60’s when they discovered that it does not work to prevent miscarriages and causes major side effects to the next generations. This drug caused many horrific side effects to the patient’s offspring and even to the 3rd generation.
    I lost over 100 lbs from my heaviest, but my legs are still heavy and constantly feeling strained. I still need to lose 30 lbs to get to my healthy weight though, but I reached a stopping point after losing 103 lbs… and don’t get me started on loose skin, joint replacements and unexplainable bruises!
    I did take phentermine to help lose the 2nd half of the 103 lbs and I used the LA Weight Loss diet plans to lose the whole 103 lbs (they closed their centers but the diet plans are downloadable online) the weight came off consistently at 10 lbs per month, but then the weight loss stopped before I could lose the last 30 lbs. Most likely because that is the lipedema fat that is unreachable.
    I understand that there is about 15 lbs of extra skin after losing that much weight, so I accounted for that, by adding 15 lbs to my healthy weight to set my goal weight.
    I think lipedema patients try so hard to lose weight, but without knowledge of this disease, they just throw in the towel and give up. I know I did, and that was the reason I was so overweight… I believe the lipedema fat itself only accounted for 30 or 40 lbs. But when it makes your life miserable, and you can’t fight the fat, you just turn to food for comfort since it is a lost cause anyway.
    Hopefully, your article will enlighten affected people and give them enough hope to set-up a plan and not give up.

    If I had this knowledge 40 years ago, I would have fought harder to not let it progress! But who knew what we were fighting? Doctors just assumed we like to eat too much because medical schools ignored it as a disorder altogether.

  27. Lorraine Tall Lorraine Tall says:

    One of my Doctors said “No it”s Just fat”! I’m now 75 and it is getting worse. My mother was the same. Have it in both the legs and arms which get sore to touch, bruise easily is non-pitting etc.

  28. Lorraine Tall Lorraine Tall says:

    In Australia there is almost nothing known about this. My mother was like it but was told she was just fat/ It has been the same for me. One doctor said “No it isn’t anything. You are just fat!” I knew it was something different. Thank goodness my latest doctor realizes it is not. I have it in arms and legs and I always have bruised easily. It is sore, cold to touch and non-pitting. I’m now 75 it I noticed the change from around 38 years old. I am so disallusioned that the doctors don’t even want to know about it in Australia. Finally found one who listens at least.

  29. Silvia Laing Silvia Laing says:

    Hi Lindsey 
    Thank you for a very well researched and presented article that should help many women who are uncertain what is ‘wrong’ with their legs.
    I have been diagnosed at the age of 12 and live with a progressive Lipoedema for 44 years now.
    As I am completing menopause,I do consider surgery for the first time.
    I wish everyone living with the condition a good life and like you all to know : it is possible ! 

  30. Barbara Walsh Barbara Walsh says:

    Hi Lindsey ,
    I guess you have no idea how many women you help by this post.I will be sharing it with our patients. Thank you for such a comprehensive explanation.

  31. Lindsay Davey Lindsay Davey says:

    Thank you Barbara. We are so very pleased to help disseminate information about this meaningful topic. Thank you for your kind feedback. Best, Lindsay Davey

  32. I love reading an article that can make people think. Also,
    many thanks for permitting me to comment!

  33. KAREN KAREN says:

    The US is ridiculously uninformed ! IM IN A CITY OF 1 MILLION, KNOWN FOR GREAT MED CARE…BUT THIS OR LYMPHEDEMA…ITS PATHETIC ! YAY CANADA! WONDER IF MAYO IN MN has listened to our friend (I HOPE WERE STILL FRIENDS !) up North ! Thank the Lord more women are in medicine, we, by nature, LISTEN and our extra sense of ” somethings not RIGHT here, etc ” I hope is not LOST in med schooll !

  34. KAREN KAREN says:

    Women all over the world thsnk you. Those who can come yto you WILL!

  35. Gina Turner Gina Turner says:

    I was misdiagnosed for years. Then I was diagnosed with Lymphedema. With no success from my therapist and Lymphedema specialist I stopped going. Then a co-worker told me of a therapist 45min away from me. Within 5 minutes of talking with her and a visual, she did a quick pinch of the skin on my big toe and told me I did not have lymphedema – I had Lipedema. Never hearing of this, I told her my symptoms and my therapy starts next week and I have an appt scheduled with a cardio-vascular specialist. Thank goodness I live in Northeast Ohio!

  36. Julia Jepps Julia Jepps says:

    Such an interesting read. I always had “big” legs as a teenager despite walking 2 miles to school, riding and swimming every day and school sport. It caused me much unhappiness. My mother wondered if something was triggered by a kick to my stomach by a horse when I was younger. Now my legs are totally hideous – lumpy and mis-coloured and I am ashamed to show them. I have lost and put on weight several times – my legs do reduce but never become slim. My ankles and knees are very puffy – knees like footballs – and now I have knee pain. I know weight loss helps but I never get the slim legs that I so envy. Ankles are permanently swollen and worse in the summer. I am very depressed by this and my doctor who is very kind, has not even heard of the condition. Even if I do get a diagnosis, I cannot see what can be done. I cannot afford MLD regularly although I can see why it would help. If I ever have the money, I will go for liposuction to get rid of the loathsome lumps and bumps. It is a horrible condition and one that seems to garner very little awareness or research from the medical community. I live in the UK.

  37. Hello Julia,
    I’m so sorry to hear about your long battle with your legs in terms of their size, and persistent swelling. Indeed, as you say the knee pain can most likely be helped by weight loss (which I know you’ve tried, to no avail with the ankle and knee shape/size/swelling), strengthening your leg muscles, supportive footwear and sometimes bracing, as needed. But the swelling/possible lipedema is something that you’re right, not all family physicians are all that aware of, nor is there a ‘cure’ for this condition. What we suggest is to perform self massage as best you can, which could be shown to you by a CDT therapist even if only at a single visit. That, and compression that captures the areas you are swollen (legs including ankles but not necessarily the feet) can provide pain relief, and reduce the extent to which you may have swelling confounding the underlying lipedema (though I know you have not yet been formally diagnosed). Here is a link from our research science blog post, where you can see a photo of one such garment option, which our patients with lipedema have found helpful for some of their symptoms (you can read other reviews by lipedema patients from the link, as well).
    https://torontophysiotherapy.ca/patient-guide-lipedema-lipolymphedema-treatment/
    I hope that helps Julia. Lipedema and idiopathic leg edema is frustrating indeed, in large part because there isn’t much awareness about these conditions. I wish you the very best of luck and hope that you can connect with a CDT therapist, or even a dermatologist, or vascular surgeon, who has at least some experience with lipedema patients and their unique needs and symptoms. Perhaps the compression will give you some relief as well, as many of our patients have found. Sincerely, Lindsay Davey

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