Lipoedema Research Library
In the 12 months after diagnosis, I spent hundreds of hours researching lipoedema.
To save you the hundreds of hours (and the overwhelm!), I’ve collated the research papers, websites, video content, Standards of Care and resources that have given me the most clarity, and real actionable insights.
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Latest Research on the Cause of Lipoedema
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A collection of recent exciting research (most within the last 1-2 years) that shows how the medical community is inching closer to understanding the nature and origins of lipoedema, potential diagnostic test and potential drug treatment.
Biomarker for lipedema, other lymphatic diseases discovered | News Center | Stanford Medicine
New discoveries make steps towards lipoedema diagnosis and treatment | Aged Care News 2021
Lipodema is caused by subclinical compartment syndrome | Dr Karen Herbst for Lympha Press
Things you may not have known about lipoedema – Dr Karen Herbst for Lympha Press
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Nutrition & Diet
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Nutrition plays a key role in the management of lipoedema. This collection of research papers and medical presentations from key researchers in the lipoedema field helped me to systematically trial and define the right nutrition plan.
Lipodema can be treated non-surgically – a report of 5 cases
Eating to starve lymphodema and lipodema – Chuck Erhlick, MS, MBA – Youtube
Vitamins, minerals and supplements for lipodema – Dr Karen Herbst & Chuck Erhlich – Youtube
Researchers deliver a verdict on supplementation in managing lipedema
Reduce Inflammation with These Lipedema Diets
Dietary supplements for lipedema | PMC
Supplement Protocol | Dr Karen Herbst
Lipedema Treatment & Causes | The Lipedema Project
https://www.healthline.com/nutrition/foods-to-lower-estrogen#tips
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 additional unexpected improvements in my body. All of the fairly recent research that I’ve collated here indicates that both shockwave and ultrasound cavitation might be an excellent conservative option for lipoedema patients.
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’. I definately experienced benefits of compression and MLD within days of starting therapy. This is a collection of the research and resources that I found helpful in understanding the role of compression and lymphatic drainage.
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.
Skin Health
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I couldn’t find any substantial, credible research regarding the impact of lipoedema on the skin, nor how to maintain the integrity and health of our skin. Most of the information I found was anecdotal, or a conclusion drawn from a similarity with another condition (e.g. lymphodema). This isn’t inherently bad – clinicians and patients have likely had to use a trial and error approach due to lack of research. 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 ‘ok’ papers 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
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
Dr Naveen Somia | Sydney 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 very little robust research on this topic, mostly frequent mentions of ‘common’ comorbid conditions such as venous insufficiency, hypermobility and Ehlers Danlos, muscle weakness and gait irregularities. All are of personal interest to me, so I’ll add to this collection if I find anything new / robust.
Hypermobility and ED:
Connective tissue disorders and lipedema | Dr Karen Herbst for Bendy Bodies Podcast
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.