Lipedema vs Cellulite, Lipedema Stages and More

This blog will discuss lipedema vs cellulite, lipedema stages and so much more! Lipedema, (known as lipoedema in the UK), is a connective tissue disorder that belongs to the family of Rare Adipose Disorders (RADs). It results in the excessive accumulation of fat under the skin (subcutaneous fat).

This blog is not meant to diagnose or treat and medical condition. You can read this blog from top to bottom, or skip to a section using this Table of Contents

What is Lipedema?

Lipedema is a chronic medical condition characterized by fibrotic loose fat tissue. It is often painful and therefore is also called Painful Fat Syndrome. There can often be fat nodules throughout the body which, if present can help to provide a definitive diagnosis.

Lipedema Nodules

Fat nodules are one of the distinguishing features of lipedema – which would separate it from cellulite as well as from normal body fat and lymphedema. The nodules can be hard spheroids – described as feeling like peas, beans or buck-shot (Herbst, 2015).

The spheroids are approximately 5 mm by 5 mm up to 10 mm by 10 mm which are distinct from each other yet packed together (Herbst, 2015).

They are in fact, hard calcified necrotic fat that form due to the connective tissue disorder. There is another type of fat nodules which is larger and softer, called a lipoma. These can also be present with lipedema (Herbst, 2015).

Sometimes, instead of nodules, the skin looks like an orange peel it is called peau d’orange with a thick and pitted appearance. It can be challenging sometimes to distinguish from normal fat with cellulite and diseased fat with peau d’orange.

Lipedema vs Cellulite

Cellulite is a cosmetic issue with no serious medical implications, and results when the fat and connective tissue are pushing and pulling the skin.

In contrast, lipedema is a progressive chronic disease with several comorbidities (keep reading for a full list). Lipedema can greatly benefit by early diagnosis and treatment, so if you’re not sure if you have cellulite or lipedema, keep reading.

Lipedema Diagnosis

The diagnosis of lipedema is critical to get you started on the right treatment and the sooner you can get a definitive diagnosis the better. But…finding a doctor that can confidently provide the assessment and lipedema diagnosis is a challenge.

It is the rule and not the exception, unfortunately, that individuals with lipedema can struggle for years and even decades being told they have obesity and/or cellulite and missing out on the proper lipedema diagnosis.

If you are in this situation now, then you need to continue to advocate for yourself. Find a certified lymphedema therapist who can then recommend a physician that is familiar with lipedema.

How is Lipedema Diagnosed?

There are several parts to a lipedema diagnosis including:

Physical Exam

Lipedema tends to be bilateral and symmetrical  (equal on the right and left sides).  But it is disproportionate – not the same not the same on the top and bottom of the body – depending on the exact type (see below for types of lipedema) but most commonly it presents as disproportionately larger hips and thighs and a smaller abdomen and torso and unaffected hands and feet.

Here are some important aspects of the physical exam (Ghods, 2020, Herbst, 2021):

• Wrist and ankle cuffs (this is a hallmark sign of lipedema)
• Negative stemmer sign (see below)
• Broken blood vessels or spider veins (telangiectasia) around the fat deposits
• Ankle pronation
• Plantar arch flattening
• Hyperlordotic curve in lumbar spine (a big inward curve in the lower back)
• Valgus knee, also called “knock-kneed” (the ankles don’t touch when the knees are together)
• Hypermobile joints – this is present in about 50% of cases

Stemmer Sign

The stemmer sign is an easy physical exam that is used to diagnose lymphedema. If the examiner is not able to pinch the skin between the second and third toe, then this is a positive stemmer sign. In one study of 110 patients, the stemmer sign was found to be 92% accurate in detecting lymphedema (Goss, 2019).

If you have positive stemmer sign, that means lymphedema is likely present, now it must be determined if you have lymphedema or lipo-lymphedema.

Patient History

If you have lipedema, you may find that your limb feels heavy.  In the stage I, you may describe your skin as feeling spongy. This is important to discuss with your physician, as well as other issues.

You may also complain of:

• Pain and easy bruising
• Worsening pain later in the day
• Difficulty losing weight in the lipedema areas, when the rest of the body will respond to diet and exercise
• Skin that feels cold in the lipedema areas

Family History

Your diagnosing physician should be asking about your family history. Try to look up family photos, with special attention to your female relatives. This can sometimes be a challenge as your relative may have taken steps to cover up their legs and avoid appearing in photos.

If they had “stove pipe legs” as they were sometimes called, they may have been covered up. Speaking to your relatives and having this family history can help you to sort out your backstory and may help with the diagnosis.

While it is mostly in female relatives, check the family history in both your father’s and mother’s families, as it doesn’t just get inherited from your mother’s side.

Medical Testing

This isn’t one specific test for lipedema, but here are some that will help form a diagnosis.

Ultrasound for lipedema will show thinner skin and increased thickness of the subcutaneous fat, which is more prominent towards the calf and lower leg. The thickness is classified as follows: 12 to 15 mm is mild, 15 to 22 mm is moderate, more than 20 mm is distinct and more than 33 is severe (Vyas, 2022).  But, this isn’t conclusive for lipedema, as obesity can also show similar changes.

Ultrasound can also look for peripheral vascular disease. This would indicate the veins in your legs are not efficient and some blood fluid is leaking out and pooling.

This doesn’t rule out or in lipedema either however, as many women can have lipedema AND vein problems (see concurrent conditions below), but it can help to get the proper treatment for your veins.

Lymphoscintigraphy, is a test in which dye is injecting into the webbing of the toes and allowed time to be taken up by the lymphatic vessels. Your legs would then be examined with the room lights off and using a special light to visualize the functioning of your lymphatics.

Unfortunately, this doesn’t entirely rule out lipedema either, as individuals can have lipedema alone, lymphedema alone or a combination of the two – called lipo-lymphedema. But getting this information is vital!

Genetic Testing for Lipedema, is one test, that can give you a definitive yes, but…right now only one gene mutation has been identified, which is AKR1C1. But, other genes mutations are currently being researched (Michelini, 2022).

DEXA Scan (Dual-energy X-ray absorptiometry scan) is used to measure bone mineral density, but can also measure the fat and lean mass. A higher fat to lean mass ratio can be indicative of lipedema (Vyas, 2022).

After the physical exam, the medical testing and history, the diagnosis depends on the clinical experience of the physician, apart from a positive AKR1C1 genetic result there is not one single simple diagnostic measure.

Summary: Lipedema vs. Cellulite

To summarize, here are the differences between lipedema vs cellulite:

Cellulite

• Cosmetic issue where skin looks pitted and bumpy
• No swelling
• No fat nodules
• No pain
• Normal bruising

Lipedema

• Painful
• Easy bruising
• Fat nodules under the skin
• Sparing of hands and feet which can give an appearance of an ankle cuff, wrist cuff, or elbow overhand although, not in 100% of patients
• Limb swelling with pitting can occur, but pitting does not need to be present for a diagnosis
• Ankle pronation
• Plantar arch flattening
• Herperlordotic curve in lumbar spine
• Valgas knee
• Hypermobile joints (50%)

Lipedema vs Obesity 

A similar list of criteria can help to distinguish lipedema vs obesity. Obesity is often described as being apple or pear shaped. If you hold your body fat around the hips and thighs – this is pear shaped, also called gynoid obesity and is more common in women, especially pre-menopausal women.

When fat is held around the stomach, this is called apple shaped or android obesity. The android is the more metabolically dangerous as the fat can be stored in the visceral layers and accumulate in the liver and other organs.

It’s the gynoid or pear shape that is harder to distinguish from lipedema, as lipedema tends to also accumulate around the hips and thighs. Further confounding the issue is the fact that, obesity often accompanies lipedema.

What might help to distinguish obesity from lipedema is that lipedema fat is very hard to lose, while gynoid fat will likely reduce proportionate to other fat in your body when weight is lost.

So while two women, one with gynoid body fat and one with lipedema might do weight loss strategies like healthy diet and exercise, the women with normal gynoid body fat distribution might lose weight from all her body – while it won’t be equal everywhere, and she may lose some in more places than others, a women with lipedema, can become very lean on her trunk and non-lipedema areas but still remain the same in the lipedema areas.

Lipedema fat vs normal fat

Lipedema fat has a different structure. While lipedema or lipoedema, means “edema of fat”, that doesn’t accurately describe the structure of lipedema fat.

In lipedema, there is adipocyte hypertrophy – enlarged fat cells, there is also more fibrosis (scarring), and more macrophages, indicating inflammation. There is more angiogenesis – creation of new blood vessels indicating that the blood vessels are altered in lipedema (Al-Ghadban, 2019).

Here is a description on lipedema pathogenesis (Al-Ghadban, 2019):

• Hypertrophic fat cells (increase size of fat cells)
• Macrophages (immune cells) surround the fat cells
• Crown like structures form
• Blood capillaries dilate and new blood vessels are formed
• Increase flow of blood plasma into the fat cells
• Fat cells are unable to remove plasma
• Excess fluid in the fat stimulates it to grow
• Inflammation creates fibrosis and difficulty in losing weight
• Interstitial fluid (fluid inside the cell) become stagnant – activates nerve endings causing pain

Bottom line – the structure of the fat is not normal and these pathological changes result in significant consequences.

Lipedema vs. Lymphedema

What about lipedema and lymphedema? Lipedema can often be misdiagnosed for lymphedema, and to make matters even more challenging some individuals also have lipo-lymphedema – a combination of the two conditions. Here are some of the differences between lipedema vs lymphedema.

Lipedema

• Tends to be symmetrical from left to right
• Spares the hands and the feet
• Tends to focus on the hips, thighs, legs, upper arms and sometimes the lower abdomen
• No pitting
• Negative stemmer sign
• Painful
• Fat nodules
• Fat pads above or below the knee
• Occurs mostly in girls and women and minimally in men
• Tends to present itself during puberty

Lymphedema

• Can affect one side only or two sides non-symmetrically
• Pitting edema
• Positive stemmer sign
• Can occur after cancer treatment, surgery or injury
• Can be primary and be present at birth or appear spontaneously
• Can be reduced with decongestive therapy
• No fat nodules
• Occurs in men and women
• Can occur at any time

Lipedema and Lymphedema similarities also exist, such as:

• Primary lymphedema and lipedema both appear to have a genetic component
• Both are inflammatory conditions
• Stage III lipedema can include lymphedema
• Both can occur along with venous insufficiently
• Both can benefit from compression garments
• Both can be treated by certified lymphedema therapists
• Both can benefit from anti-inflammatory diet

Lipo-lymphedema

To make matters even more challenging to get a proper diagnosis, there is a condition called lipo-lymphedema in which individuals have both lipedema AND lymphedema at the same time. This is also known as stage IV lipedema (see below for stages) (Herbst, 2015).

Not everyone with lipedema will go on to develop lymphedema, but it can develop during any stage of lipedema (Herbst, 2015). Pitting edema and a positive stemmer sign are indications that lymphedema is present.

If lymphedema is present, it greatly increases the chances of cellulitis and wound development

What Causes Lipedema?

The cause of lipedema has not yet been established, but several theories are being considered. One is that it is linked to estrogen and this is why, it predominately occurs in women and tends to first present itself at puberty and can get worse during hormonal changes, such as pregnany, using birth control or menopause.

Lipedema Pain

Lipedema pain has been described as “dull, heavy and pressing” (Shavit, 2018). It can be stimulated by touching or occur after sitting or standing for a long period of time. I’ve heard women say that they can’t tolerate a cat walking across their lap, or holding a baby on their lap or that regular Swedish massage is painful for them.

While this can be relieved by compression garments, getting the garments on can be uncomfortable and getting used to them can take some time. Other pain relief can come from manual lymphatic drainage, compression pump and liposuction surgery. See lipedema treatment.

Lipedema Stages and Types

Lipedema is classified by stages and types. The types of lipedema are based on the location of the lipedema fat on the body. The stage of the disease indicates the amount of disease progression and advancing stages are accompanied by additional signs and symptoms of disease.

Types of Lipedema

Type 1 Lipedema

This type concentrates lipedema fat around the hips and buttocks. There can also be a “saddlebag” appearance with this type.

Type 2 Lipedema

This type concentrates lipedema fat from the bottocks to the knees. It can often have lipedema fat that hangs over the top of the knee, making the knee hard to see. It can also overhand the inner aspect of the knee and appear like a lobule. You will often see a dramatic difference in the skin from the thighs compared to the calf and shin.

Type 3 Lipedema

Type 3 lipedema goes from the buttocks to the ankles. This type can show the tell-tale ankle cuff, which makes it difficult to wear boots or shoes that come above the ankle.

Type 4 Lipedema

In this type, lipedema is in the arms, usually concentrating on the back of the upper arm, but can go from shoulder to the wrist or from shoulder to elbow or elbow to wrist. The diseased fat may overhand the elbow and when the arms are held out, it can give a bat-wing appearance.

This type may include lower body as well, in that case, it is said to be combined with another type. Common combinations are Type 2 and 4 as well as Types 3 and 4 (Vyas, 2022). See below for more info on lipedema arms.

Type 5 Lipedema

This type is from the knees down, but like type 3, would probably spare the feet for most people and may have a visible ankle cuff. This is the most rare type (Vyas, 2022).

Lipedema Arms

Lipedema in the arms or type IV lipedema occurs in about 30% of cases. It can also occur in the arms only, without involvement of the legs, but this is rare (Reich-Schupke, 2012).

Lipedema in the arms also tends to be symmetrical so that would distinguish it from lymphedema which tends to be worse on one side.

Lipedema Stages

According to (Herbst, 2015 and Vyas, 2022), the stages are :

Stage I Lipedema

There is a normal looking smooth skin surface with enlarged subcutaneous fat tissue. You may be able to feel nodules under the skin. There may be pain and easy bruising.

Stage II Lipedema

Indentations of the skin and the fat under the skin to give the skin an uneven appearance or dimpling which may include lipomas. At this stage, the skin may have a mattress like appearance caused from thickening and contraction of connective tissue over the fat.

Stage III Lipedema

Large collections of subcutaneous fat cause lobules which distort the normal silhouette and can look like large folds of skin. The body has a more pronounced disproportionate appearance, with the lower body looking larger than the upper body. Joints, mobility and balance can be affected.

Typical signs of this can be fat on the sides of the hips “saddlebags”, fat on the upper buttocks “butt shelf”, fat the hangs over the top or inside of the knee, fat that overhangs the elbow “bat wings”.

Those with stage 3 lipedema have greater and more serious complaints about their condition, including but not limited to: blood clots, burning pain, constipation, flu-like symptoms, high body temperature, nausea and sleep apnea (Herbst, 2015).

Stage IV Lipedema

This is the stage at which lymphedema emerges and this is referred to as Lipo-lymphedema. As the staging increases so does the increase in fibrotic tissue and pain (Ghods, 2020).

Lipedema Types and Stages

When you consider both the type and stage, you can refer to a case of lipedema as “type 3, stage IV” etc., which helps to identify both the location and severity. Whatever type an individual has, it presents as disproportionate fat – meaning that the parts of the body with lipedema is larger than the parts without.

For example, one of my clients identifies that she wears a size 8 on the top and a size 14 on the bottom and that her waist is  34” and her hips are 54”. This helps demonstrate the disproportionate nature of lipedema.

While disproportionate from top to bottom, lipedema is often symmetrical from right to left. This helps to differentiate it from lymphedema which can affect only 1 leg or 1 arm, while lipedema usually affects both more or less equally.

Lipedema Comorbidities

Comorbidities are other medical conditions that occur at the same time, sometimes called concurrent conditions. With lipedema, there are several conditions that appear to be linked, as they occur at a higher frequency that just by chance.

The other conditions that occur most often with lipedema are (Ghods, 2020, Herbst, 2021):

• Obesity
• Hypothyroidism
• Migraines
• Depression
• Ehlers Danlos Syndrome
• PCOS
• Venous disease
• Lipomas
• Sleep apnea
• Anxiety
• Eating disorders
• Migraines

While this may seem like problem on top of problem, there is some good news. It appears that people with lipedema seem to be protected from diabetes and high cholesterol, as these conditions appear at a much lower rate than found in people with a similar BMI.

The rates of diabetes and dyslipidemia are 5% and 7%. While they may still need treatment for these conditions, it was found to be delayed by years compared to non-lipedema population (Ghods, 2020).

Lipedema in Men

Lipedema occurs mostly in women, but can occur in men. It is described as occurring along with testosterone deficiency, growth hormone deficiency, liver disease or high estrogen levels. It also has been described as occurring with hypogonadism and hyperestrogenemia (Herbst, 2012, Ghods, 2020).

Lipedema Prevalence

The prevalence of lipedema is estimated to be 1 in every 72,000 people (Vyas, 2022). But because it is often either not diagnosed, or diagnosed as obesity, or lymphedema or other misdiagnosis, the prevalence number is likely greater.

Bottom Line for Lipedema

If you suspect you have lipedema, it’s important to get  a diagnosis and treatment. Continue to advocate for yourself and connect with others that have lipedema for support. A certified lymphedema therapist near you is likely your best best for getting a diagnosis as they are very familiar with lipedema and lipo-lymphedema. Don’t forget that your diet is also important!

Support is Available

If you are living with lipedema, even if you’re not completely sure and haven’t been diagnosed yet, but are trying to understand how nutrition may affect your symptoms, I offer virtual nutrition consultations where we explore individualized strategies based on your medical history and current diet. Book a consult. 

Also, Read about lipedema treatment.

References for Lipedema vs Cellulite

Al-Ghadban S, Cromer W, Allen M, et al. Dilated Blood and Lymphatic Microvessels, Angiogenesis, Increased Macrophages, and Adipocyte Hypertrophy in Lipedema Thigh Skin and Fat Tissue. J Obes. 2019;2019:8747461. Published 2019 Mar 3. doi:10.1155/2019/8747461

Ghods M, Georgiou I, Schmidt J, Kruppa P. Disease progression and comorbidities in lipedema patients: A 10-year retrospective analysis. Dermatol Ther. 2020 Nov;33(6):e14534. doi: 10.1111/dth.14534. Epub 2020 Nov 22. PMID: 33184945.

Goss JA, Greene AK. Sensitivity and Specificity of the Stemmer Sign for Lymphedema: A Clinical Lymphoscintigraphic Study. Plast Reconstr Surg Glob Open. 2019;7(6):e2295. Published 2019 Jun 25. doi:10.1097/GOX.0000000000002295

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Herbst K, et al Ch. Lipedema fat and signs and symptoms of illness, increase with advancing stage. Archives of medicine. 2015 7 4(10)1-8.

Herbst KL. Rare adipose disorders (RADs) masquerading as obesity. Acta Pharmacol Sin. 2012;33(2):155-172.

Herbst KL. Subcutaneous Adipose Tissue Diseases: Dercum Disease, Lipedema, Familial Multiple Lipomatosis, and Madelung Disease. [Updated 2019 Dec 14]. In: Feingold KR, Anawalt B, Boyce A, et al., editors. Endotext [Internet]. South Dartmouth (MA): MDText.com, Inc.; 2000-.

Michelini S, Herbst KL, Precone V, Manara E, Marceddu G, Dautaj A, Maltese PE, Paolacci S, Ceccarini MR, Beccari T, Sorrentino E, Aquilanti B, Velluti V, Matera G, Gagliardi L, Miggiano GAD, Bertelli M. A Multi-Gene Panel to Identify Lipedema-Predisposing Genetic Variants by a Next-Generation Sequencing Strategy. J Pers Med. 2022 Feb 11;12(2):268. doi: 10.3390/jpm12020268. PMID: 35207755; PMCID: PMC8877075.

Reich-Schupke S, Altmeyer P, Stücker M. Thick legs – not always lipedema. J Dtsch Dermatol Ges. 2013 Mar;11(3):225-33. doi: 10.1111/ddg.12024. Epub 2012 Dec 11. PMID: 23231593.

Vyas A, Adnan G. Lipedema. 2022 Feb 16. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan–. PMID: 34424639.