June is Lipedema Awareness Month. The disease is still widely unknown to people and clinicians. So we are sharing its presentation, how to diagnose and treat it, and, most importantly, how it is connected to Ehlers-Danlos Syndrome (EDS). 

About Lipedema

Lipedema is a complex and poorly understood abnormal fat disease that tends to affect mainly women, although some men have been documented with this disease.  Currently, it is believed  up to 11% of women live with this disease even if they are not diagnosed. So, it is not a rare disease, just rarely recognized and diagnosed.

Since its discovery in 1940 it was almost never diagnosed or treated until about 15 years ago when groups of women went searching for answers to why their bodies were abnormally shaped and non-responsive to any conventional weight loss activities. They also complained about unexplained pain in the fat areas, mobility challenges, self-image issues and declining quality of life that seemed to have no solutions.

While the etiology of lipedema is still unknown, international research continues to identify the genetics involved in its development and possibly even prevention one day. There is also ongoing research into treatment modalities that include surgery, compression technologies, lymphatic movement, skin care and more. 

It should be noted that lipedema is often confused and misdiagnosed as obesity or lymphedema. They are NOT the same thing. Medical professionals and patients need to be knowledgeable in how to differentiate the three conditions as treatment plans are different for each condition. 

What is Lipedema?

Lipedema presents as a disproportionate accumulation of fat in the lower part of the body, particularly the hips, buttocks and thighs, compared to the upper body. It is symmetrical in presentation, which is key to differentiating it from other conditions like lymphedema. It is resistant to the effects of diet and exercise and does not discriminate on body size, shape or ethnicity. It’s usually hereditary.

Phenotypes

People with Lipedema may present differently. Most will have the classic symmetrical hips, buttocks and thigh involvement but others will also have large ankle cuffing (“cankles”) and or large heavy under arm lipedema in the upper arms (“batwings”).  (The feet are spared.) Some may even have lipedema and lymphedema in their abdomen presenting with a large pannus (belly apron). It is currently unknown why or how the involvement chooses where to present itself on the body.

Development

It is believed that lipedema manifests itself at times of hormonal estrogen shifts.  Many women note their first awareness of body changes happened at puberty.  Others have reported lipedema developing or worsening during pregnancy. And others note worsening of symptoms at menopause.  

Stages

Lipedema is usually a progressive disease. The community has adopted four stages of development. Stages 1 and 2 are more difficult to diagnose as symptoms may not be consistent and are often confused with regular obesity development. Stages 3 and 4 usually involve lymphatic dysfunction, fibrotic tissue development, severe mobility challenges, constant pain from tissue pressure and osteoarthritis.

Diagnosing Lipedema

Lipedema needs to be diagnosed by a knowledgeable medical professional through palpation of the affected areas, history of symptoms, lymphatic involvement, bruising, inflammation, and pain assessment. If you or your clinician need more information on this process see Lipedema Simplied’s Clinician’s Guide to Lipedema. 

Lipedema Simplified has developed a quiz to help you decide if you suspect you have lipedema.

Treating Lipedema

A physical therapist, specifically a Certified Lymphedema Therapist (CLT), will manage most of your treatment needs. There are several modalities that can be employed based on your stage and symptoms, which includes your level of swelling, presence of lymphedema, pain levels and location of the lipedema requiring treatment. Some people may require more than one of these modalities.

• Elevation – based on severity patients may find elevating their legs several times per day may bring relief from prolonged swelling and pain.
• Manual Lymph Drainage (MLD) – strategic light movement of the skin from distal points towards the heart helps move stagnant lymphatic fluid out of the interstitial tissues and body extremities for pain and swelling relief. 
• Compression bandaging or garments – those with swelling issues not easily mitigated by elevation or MLD may need to wear leg or arm compression garments throughout the day to stop the fluid from building up in the extremity and prevent tissue fibrosis.
• Pneumatic Pumps – these mechanical devices provide a sequential massaging effect much like MLD but on a schedule that works for the patient. Pumps can be used on the legs (most common), abdomen and arms for swelling, pain and fibrosis management.
• Surgery – surgery is currently the only means of removing lipedema fat cells and nodules from the body. It has mixed results so far with some reporting a significant reduction in size, swelling and pain, while others report the fat cells returning down the road. This solution needs to be closely evaluated on an individual basis as it is not always the correct solution.

Several countries have adopted their own national standards of care for lipedema treatment. Here is the one for the United States. Other countries’ standards of care can be found here. 

Co-Occurring Conditions

Lipedema is a complex condition that often is accompanied by co-occuring conditions. Some of these conditions emerge earlier than others and some people may not experience any of them. One of the most common co-occurring conditions to this connective tissue disorder is another connective tissue disorder: Ehlers-Danlos Syndrome. Most women, especially those in the later stages of lipedema, often report the presence of hypermobility and even suspect one of the forms of EDS.  

There is a current debate on whether the hypermobility experienced with lipedema is truly a part of hypermobile EDS (hEDS) or is another symptom of lipedema itself.  More research in this area is needed.

Hypermobility is both a blessing and curse for those with lipedema. Large fat pads that overhang the knees place unequal pressure on the knee joints forcing them to shift in location. This creates pain, and uneven gait and overall mobility challenges.  Hypermobility makes the knees (and hips) more unstable by allowing the knee caps to shift around, sometimes causing them to dislocate for a period of time.  Hypermobility can also be beneficial by allowing someone to reach the floor, even with a significant amount of lower body fat, to put on their compression garments.

Some of the other co-occurring conditions seen with lipedema are:

• Lymphedema
• Obesity
• Mast Cell Activation Syndrome (MCAS)
• Venous insufficiency
• Mental health conditions (depression)
• Thyroid conditions (specifically hypothyroidism) 

Lipedema Support

Most people with diagnosed or suspected lipedema and possible co-occurring conditions often feel alone and isolated. They experience frequent misdiagnosis, gaslighting, body image issues, and dismissive experiences when trying to explore lipedema within the medical community. This situation becomes worse in the progressive stages where physical isolation, limited mobility and self-image challenges degrade a person’s quality of life. This severs critical holistic support needed to properly address this condition.

Thankfully, the landscape is changing as more national and international support groups spread awareness and provide holistic support to those suffering with this disease and its co-occuring conditions. Many find those critical support needs in online social media support groups, regular video conferencing events and symposiums that share new technologies, treatments and advancements in identifying the etiology and testing for lipedema.

The Takeaway

Lipedema is NOT your fault! And you are NOT alone! There are many women worldwide with this condition who desire connection, hope to improve their quality of life and that of their affected offspring, and to relate to others who live with this disease. Please find a support group and share your story. You never know who you may help… maybe even yourself!

Esther L. Gartner, author of MoreThanFat.com blog and lipedema patient, June 5, 2025.

Resources used for this article:

1. StatPearls – Lipedema: https://www.ncbi.nlm.nih.gov/books/NBK573066/ 
2. Fat Disorders Resource Society – Not Just Fat Unraveling the Mystery of Four Complex Disorders | Karen Herbst: https://youtu.be/KmYDgCZad_M?si=uaNmxQOsc_cQCYw4 
3. Lipedema Simplified – What is Lipedema?: https://lipedema-simplified.org/what-is-lipedema/ 
4. Lipedema Simplified – Clinician’s Guide to Lipedema:  https://www.lipedema.org/clinicians-guide 
5. Lipedema Simplified – Do You Have Lipedema Quiz: https://lipedemaproject.org/do-you-have-lipedema-quiz/ 
6. Sage Journals – Standard of Care for Lipedema in the United States: https://journals.sagepub.com/doi/10.1177/02683555211015887 
7. Lipedema.com – Other Standards of Care: https://www.lipedema.com/other-lipedema-soc 
8. Bendy Bodies -Connective Tissue Disorders and Lipedema with Karen Herbst, MD (Ep 104):   https://youtu.be/5M8yy0YlMpo?si=28XG3B2wKIpV25re 
9. The Ehlers Danlos Society – Diagnostic Criteria for Hypermobile Ehlers Danlos Syndrome: https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf