Navigating Lipedema is one of the most difficult journey’s I’ve taken on in my lifetime. Gross under-diagnosis and fat bias support the institutional barriers to treatment. I’m determined to do the impossible and I refuse to compromise self-love, self-care, and support in exchange for it.

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What is Lipedema?

Image of four sets of legs showing the affects of Lipedema from stage 1 to stage 4 with Lipedema fat disorder.

Artwork by Sen Mendez, https://artbyqueensensen.bigcartel.com/

If you ask anyone to name a fat disorder, they’d likely struggle to think of one. Likewise, when people find that they have problems losing weight, they never consider a fat disorder to be the culprit. There are, however, diseases, conditions, and disorders that look a lot like obesity but are not obesity at all. In this post, I’ll bring awareness to one such disorder affecting a lot of people called Lipedema. So, just what is Lipedema fat disorder?

What is Lipedema fat disorder?

Lipedema is a chronic fat disorder. It causes an abnormal build-up of excess fat tissues in the legs and arms but spares the feet. This fat isn’t the ‘normal’ fat that we can burn off with diet and exercise. There are four stages of Lipedema. These stages correlate with the size of the affected limbs and the expression of symptoms.

Fat bias contributes to grossly under-diagnosed groups of people living with Lipedema.

Lipedema is not a rare condition, but people with Lipedema are largely under-diagnosed. This fat disorder rarely occurs in men, but about 11 percent of all women have it.2 These gendered percentages do not represent trans or non-binary experiences with Lipedema. Not everyone with this fat disorder is obese. Those that are will have to navigate fat bias in their doctor appointments. Lipedema is often misdiagnosed as obesity. As a result, fat bias contributes to grossly under-diagnosed groups living with Lipedema.

Lipedema is a painful fat disorder. Pain can be brought about just by touching the affected areas or the pain can be a constant presence. Lipedema can contribute to body parts growing so large that joint pain becomes another pain to manage. In some cases, people with late-stage Lipedema struggle to stand for long periods or to walk.

What are the symptoms of Lipedema?

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Easy to bruise.

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Symmetrical and bilateral swelling of the legs is the most distinct characteristic of lipedema. Some people experience swelling in other areas. About 30 percent of lipedema patients have lipedema in their arms. Lipedema doesn’t affect the feet. There are some cases where cuffing occurs at the ankle or the wrists.

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Fat feels odd and painful. The skin on the affected areas can have a less elastic feel to it. Small beads or lipoma can be seen and felt under the skin. And unlike typical fat accumulation, the areas where Lipedema is are very tender.

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Patients with Lipedema have bodies shaped by Lipedema. A person with this fat disorder can have a small upper body and a large lower body. For instance, a woman with Lipedema can wear a size eight on top, and the bottom half of their body could be size 16. Having large, column-like legs that feature rolls and folds around the knees are common.

 

Treating Lipedema fat disorder.

Here’s the tough news: There is no cure for Lipedema, however, there are non-surgical and surgical ways to manage the symptoms of this fat disorder.

Non-Surgical Lipedema Treatments:

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Comprehensive Decongestive Therapy
Comprehensive decongestive therapy (CDT) is a combination of manual lymphatic drainage, bandaging exercises, and skincare. It’s an effective treatment for lipedema, Lymphedema, and other conditions causing edema resulting from faulty lymphatic drainage.

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Manual Lymphatic Drainage (MLD)
Manual lymphatic drainage is a massage that uses gentle, rhythmic movements to help stimulate the flow of lymph fluid around the blocked areas to the healthy vessels, allowing it to drain into the venous system. There are different ways to perform manual lymphatic drainage, including Vodder, Földi, Leduc or Casley-Smith methods.5

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Use of Compression Garments
Doctors recommend Compression garments to keep any swelling down.

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Lifestyle changes
Lifestyle changes can prevent further progression of this fat disorder and help with the management of the non-lipedema fat. A diet filled with vegetables, fruits, whole grains, and lean proteins can help slow down the growth of fat deposits. People with Lipedema should minimize their consumption of dairy products (e.g., milk, cheese), fatty animal products, simple sugar and carbs, and highly processed food. Light physical activity such as walking, swimming, or biking, may help alleviate the pain.

Surgical Treatments for Lipedema:

In some cases, surgery can become the treatment of choice. Liposuction has shown to improve symptoms and quality of life.6 Liposuction has shown to improve symptoms and quality of life. There are two commonly used Liposuction methods.

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Tumescent Anesthesia (TA) Liposuction
TA only uses local anesthetic.

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Water-Assisted Liposuction (WAL)
Water-Assisted Liposuction uses a water jet to detach fat from the tissues before aspiration. This procedure uses Local anesthesia.

 

Both TA and WAL are  “lymphatic-sparing,” techniques which means both procedures are known to cause little stress or trauma on the surrounding lymphatics, connective tissue, nerves, and blood vessels.

 

Tips for getting diagnosed.

Get support from Lipedema groups on Facebook.

Find a doctor that treats Lipedema. You can rely on the surgeons who perform Lipedema Liposuction to recognize the symptoms.

Co-learn with your doctor. Your doctor may call Lipedema, “Lymphedema”, or suggest that you fix your weight problems with diet and exercise. Many people in the medical community do not have an understanding of fat disorders. It will take both of you communicating your findings to build a care plan for yourself.

Create a health history list. Cite when you first notice any signs and symptoms. Track what you did about them and the results. Digital food diaries and exercise logs are great for this.

Bring a support person or patient advocate with you to your doctor’s appointments. If you think you have a fat disorder, consider reaching out to someone for advocacy.

 

 


References:

  1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5055019/
  2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5935449/
  3. https://onlinelibrary.wiley.com/doi/10.1002/oby.22597
  4. https://torontophysiotherapy.ca/patient-guide-to-self-diagnosing-lipedema-and-lipolymphedema/#What_does_classic_lipedema_look_like_What_are_the_symptoms
  5. https://www.physio-pedia.com/Manual_lymph_drainage
  6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5533060/

Other references:

https://www.lipedema.net/tumescent-liposuction.html
https://lipedemaliposuctioncenter.com/water-jet-assisted-liposuction-wal/
https://torontophysiotherapy.ca/patient-guide-to-self-diagnosing-lipedema-and-lipo-lymphedema/
https://www.webmd.com/women/guide/lipedema-symptoms-treatment-causes
https://www.talklipoedema.org/talking-to-your-doctor
https://lipedemaliposuctioncenter.com/2018/08/having-the-lipedema-talk-with-your-doctor/

 

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