The pathophysiology story so far
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A collection of the most recent research into the possible cause of lipodema. Read how the medical community is inching closer to understanding the cause lipoedema; a potential diagnostic test; and promising drug treatment.
Things you may not have known about lipoedema
Dr Karen Herbst for Lympha Press 2024
Fascia as a regulatory system in health and disease
J Barclay, A Slater, R Granfar, R Pratt Frontiers in Neurology 2024
Lipodema is caused by subclinical compartment syndrome
Dr Karen Herbst for Lympha Press 2023
Exploring New Frontiers in Lipoedema Management: Pathophysiology and Therapeutic Innovations
Medical Online Hub 2022
New discoveries make steps towards lipoedema diagnosis and treatment
Aged Care News 2021
Biomarker for lipedema, other lymphatic diseases discovered
News Center, Stanford Medicine 2020
Nutrition & Diet
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Nutrition plays a fundamental role in the management of lipoedema. This collection of papers and presentations from key researchers in the lipoedema field helped me to systematically trial and define the right nutrition plan.
Lipoedema can be treated non-surgically – a report of 5 cases
American Journal of Case Reports 2021
Eating to starve lymphodema and lipodema
Chuck Erhlick, MS, MBA 2019
Vitamins, minerals and supplements for lipedema and Dercums
Dr Karen Herbst & Chuck Erhlich 2017
Reduce Inflammation with These Lipedema Diets
Dietary supplements for lipedema
Journal of Preventative Medicine and Hygiene 2022
Supplement Protocol
Dr Karen Herbst
Lipedema Treatment & Causes
The Lipedema Project
How your diet can affect estrogen levels
Healthline 2020
Shockwave and Ultrasound Cavitation
This is the category I find the most exciting – I’ve undergone a program of shockwave therapy and had fantastic results. Beyond the reduction in pain / swelling / fibrosis and a reduction in leg circumference, there were numerous unexpected improvements in my body. It’s a shallow pool of research so far, but it indicates that both shockwave and ultrasound cavitation may be excellent conservative treatment options.
Lymphatics, Compression and MLD
I’ve had conflicting advice on the use of compression and MLD for stage 1 lipoedema – two clinicians recommended it, one dismissed it as having ‘no evidence’. Most information I could find points to compression being one of the most important factors in slowing disease progression. I’ve collated some research and resources that I found helpful in understanding the role of compression and lymphatic drainage, and how to implement it.
Understanding fibrosis in lipoedema: Inflamed subcutaneous adipose tissue (SAT) and nodules
Karen Ashforth, OT MS CLT-LANA for Lymphatic Education and Research Network 2019
Lipoedema: Insights into Morphology, Pathophysiology and Challenges
Biomedicines 2022
Mast Cell Activation & Histamine Intolerance
Mast cells secrete histamine and may play a role in the pathology of lipoedema. There’s evidence that histamine levels in adipose cells of lipoedema patients is higher than normal, but more research is needed. High histamine can lead to allergy-like symptoms – hives and skin problems, nasal congestion, headaches, sneezing etc. I’ve had great success with a low histamine diet.
Skin Health
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I found little research regarding the impact of lipoedema on the skin, nor specific treatment recommendations. I found plenty of anecdotal information, or conclusions drawn from similarity with other conditions (e.g. lymphodema). This isn’t inherently bad – the lack of research means clinicians and patients need to use a trial and error approach, which produces anecdotal evidence. Here’s some resources that helped me with my action plan:
Surgery
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I’ve done limited research on surgical options, due to reading patient stories of lipoedemic tissue proliferating in other areas of their body after surgery. It’s enough of a concern for it to be a barrier for me for now, until further research is available.
But here’s what I’ve collated so far – some good studies and retrospectives on the efficacy of surgery, and links to a few experienced surgeons in AU and USA.
Patient-Reported Outcomes of Liposuction for Lipedema Treatment | Healthcare Journal | 2023
Liposuction in the treatment of lipoedema – a longitudinal study
Archive of Plastic Surgery 2017
Tumescent liposuction in lipoedema yields good long term results | British Journal of Dermatology | 2012
Advanced Lipedema Treatment | Dr David Amron M.D and Karen Herbst Ph.D M.D
Associate Prof. Ramin Shayan | Melbourne Australia
Standards of Care
‘Standard of care’ documents are a great tool to help you build your lipoedema action plan. These are a medical treatment guideline, that specify the ideal treatment for a particular condition, based on scientific evidence and collaboration between medical professionals involved in the treatment of the condition. I couldn’t find one for Australia which is disappointing, but these UK, USA, Germany and Dutch guidelines are very helpful.
For Physicians and Clinicians
If you’re looking for resources to help you diagnose and manage your lipoedema patients, you could start with the Standards of Care section, and a few more resources below. Unfortunately I could only find one solid Australian resource (Paxhub module), but the other USA-originating resources are all fantastic.
Comorbidities
I found plenty of information regarding comorbid conditions such as venous insufficiency, hypermobility and Ehlers Danlos, muscle weakness and gait irregularities, although more research is clearly needed. All are of personal interest to me, so I’ll add to this collection if I find anything new.
Not Sure Where to Start?
Book a Navigation Workshop to work one-one with someone who has experienced the lipoedema journey and can help you make a plan.