Lipoedema Research Articles and Guidelines to Download

These are some of the most widely read papers on lipoedema (spelt lipedema in American English): the European consensus, the UK and Dutch clinical guidelines, and published debate between specialists. Each one is free to download. The ten points under each paper summarise what it says, so you can see quickly whether it is relevant to you.

The papers give their authors' views, and specialists do not all agree, for example on the role of manual lymphatic drainage and on who benefits from liposuction. Please read them alongside advice from Mr Karri or the healthcare professional looking after you. You can read about lipoedema treatment and liposuction at The Karri Clinic.

The Karri Clinic cannot be held responsible for the accuracy of information in publications produced by external organisations.

Lipoedema: a paradigm shift and consensus
Tobias Bertsch and Gabriele Erbacher (Földi Clinic, Germany), Rebecca Elwell (University Hospitals of North Midlands NHS Trust). Foreword by Professor Hugo Partsch.
Journal of Wound Care, Vol 29, Supplement 2, November 2020 · 52 pages
10 key takeaways
1. An international consensus on lipoedema, supported by specialists from ten European countries.
2. Diagnosis needs two things together: a disproportionate build-up of fat in the legs (sometimes the arms) and symptoms in that tissue such as pain, heaviness or tenderness.
3. Despite the name, the authors found no fluid build-up (oedema) in lipoedema on examination, ultrasound or MRI.
4. Manual lymphatic drainage is not considered a treatment for lipoedema itself; if used for pain, it should be limited to about a month.
5. Between 80% and 88% of women seen with lipoedema in specialist centres are also living with obesity, and weight gain tends to make symptoms worse.
6. The authors found no evidence that lipoedema progresses on its own: in their patients, legs stayed stable over many years when weight stayed stable.
7. Sustained weight loss, including after bariatric surgery, reduced leg volume and eased symptoms, in some women to the point of remission.
8. Pain is thought to come from low-grade inflammation and poor oxygen supply in expanding fat, and is made worse by stress, anxiety and depression.
9. Recommended care combines compression, regular exercise (particularly in water), psychological support, weight management and self-management.
10. Liposuction is advised only for selected patients: symptoms despite 12 months of conservative care, stable weight for 12 months, a psychological assessment and a BMI of 35 or below.
Download PDF: Lipoedema: a paradigm shift and consensus
Best Practice Guidelines: The Management of Lipoedema
Expert Working Group co-chaired by Anne Williams and Denise Hardy, with patient representatives from Lipoedema UK and Talk Lipoedema.
Wounds UK, London, March 2017 · 36 pages
10 key takeaways
1. The first UK best practice guidelines on lipoedema, written by NHS specialists together with people living with the condition.
2. Lipoedema is described as a long-term fat disorder that almost only affects women, often starting at puberty, pregnancy or the menopause and often running in families.
3. It is frequently missed or mistaken for obesity or lymphoedema, although either can exist alongside it.
4. Diagnosis is made from the history and examination; there is no blood test or scan that confirms it.
5. Typical signs include symmetrical enlargement that spares the feet and hands, a 'cuff' at the ankles, easy bruising, tenderness and softer, cooler skin.
6. Care should be holistic, covering psychological support, healthy eating, physical activity, skin care, compression and pain management.
7. Dieting may have little effect on lipoedema fat, but preventing obesity elsewhere protects general health; no particular diet has been shown to help.
8. Low-impact activity such as walking and exercise in water is encouraged; three-quarters of surveyed patients found water-based exercise helpful.
9. Compression garments ease pain and support the tissues but do not reduce lipoedema fat; well-fitted flat-knit garments suit larger or uneven limbs.
10. Liposuction can reduce bulk, pain and bruising and improve mobility, but is not a cure; 6 to 12 months of non-surgical care and pre-operative counselling should come first.
Download PDF: Best Practice Guidelines: The Management of Lipoedema
Lipedema Guidelines in the Netherlands 2014
Working group chaired by Dr Robert J Damstra, with Dutch dermatology, surgery, physiotherapy, skin therapy, psychodermatology and patient organisations.
Dutch Society for Dermatology and Venereology (NVDV), 2014, English translation · 40 pages
10 key takeaways
1. The full national guideline on lipoedema from the Netherlands, agreed by medical societies and a lipoedema patient association.
2. It sets out a checklist of history and examination findings that together confirm the diagnosis.
3. Key features in the history are disproportionate fat, little change with weight loss, pain and easy bruising, tenderness, and no relief from raising the legs.
4. On examination the fat stops abruptly at the ankles or wrists (the 'cuff sign') and the tissue is tender when pressed.
5. Diagnosis rests on history and examination; blood tests and scans are used only to rule out other conditions.
6. Limb circumference, BMI, waist measurement and daily activity should be recorded at diagnosis and at follow-up, noting that BMI can overstate obesity in lipoedema.
7. Conservative treatment centres on an active lifestyle, weight control, graded exercise to build strength and fitness, and psychological support when needed.
8. Compression helps when there is swelling but does not reduce fat, and manual lymphatic drainage has no proven role.
9. Liposuction under tumescent local anaesthesia is described as effective for pain, mobility, appearance and quality of life, and should be done in specialised centres.
10. A healthy lifestyle is still needed after liposuction, and patient organisations are recognised for their role in information and support.
Download PDF: Lipedema Guidelines in the Netherlands 2014
First Dutch guidelines on lipedema using the International Classification of Functioning, Disability and Health
Anne B Halk (Leiden University Medical Centre) and Robert J Damstra (Nij Smellinghe Hospital, Drachten, the Netherlands).
Phlebology, published online April 2016 · 8 pages
10 key takeaways
1. A short journal summary of the Dutch lipoedema guideline, written for an international audience.
2. Lipoedema is described as a chronic condition that is often misdiagnosed or dismissed as a cosmetic problem.
3. The guideline uses the World Health Organization's ICF framework, so care is judged by how the condition affects daily life, not only appearance.
4. It lists diagnostic criteria based on history and examination, including disproportionate fat, tenderness, easy bruising and the ankle 'cuff sign'.
5. A minimum set of measurements is recommended: limb circumference, BMI, waist circumference and daily activity, repeated over time.
6. Waist measurement is suggested as a better guide to healthy weight than BMI, because lipoedema fat raises BMI.
7. The Distress Thermometer is recommended to screen for psychological distress, which often accompanies lipoedema.
8. Conservative care rests on a healthy lifestyle, weight control, graded activity and support, with follow-up at set intervals.
9. Compression stockings are advised only when swelling is present, and manual lymphatic drainage is not recommended.
10. Tumescent liposuction is the treatment of choice for suitable patients who have not responded enough to conservative care, carried out in specialist centres.
Download PDF: First Dutch guidelines on lipedema using the International Classification of Functioning, Disability and Health
Lipedema: a new paradigm shift. An interview with Dr Tobias Bertsch
Dr Tobias Bertsch (Földi Clinic, Germany), in discussion with Anna Kennedy and Pamela Hodgson.
Pathways, Canadian Lymphedema Framework, Fall 2020 · 3 pages
10 key takeaways
1. An interview with the doctor who led the European Lipoedema Forum, explaining its conclusions in plain terms.
2. Larger legs alone are not lipoedema; there must also be symptoms such as pain, heaviness or tenderness.
3. Specialists from across Europe met in 2018 and 2019 to agree a shared view of the condition.
4. Myth 1, that lipoedema is progressive: Dr Bertsch says legs stay stable over many years when weight is stable.
5. Myth 2, that lipoedema causes mental illness: a Földi Clinic study found most mental health problems began before lipoedema symptoms.
6. Myth 3, that lipoedema is a fluid problem needing drainage: scans have not shown fluid, so decongestion is not needed.
7. Myth 4, that lipoedema causes weight gain: he argues weight gain is more often the trigger, and over 80% of the clinic's patients are obese.
8. Myth 5, that weight loss has no effect: clinic measurements show leg volume falls with weight loss, including after bariatric surgery.
9. Myth 6, that liposuction gives lasting improvement: he says the evidence is limited and mostly comes from surgeons who perform it.
10. He suggests a smaller group may benefit from liposuction: stable weight, a BMI around 30, no untreated severe psychological problems and no response to conservative care.
Download PDF: Lipedema: a new paradigm shift. An interview with Dr Tobias Bertsch
Therapy for lipedema: incorporating new clinical guidelines
Guenter Klose, lymphoedema therapy educator (Klose Training, USA).
Pathways, Canadian Lymphedema Framework, Winter 2020 · 5 pages
10 key takeaways
1. A practical guide for therapists and patients on putting the European consensus into everyday care.
2. Lipoedema often comes with other conditions, especially obesity, and pure lipoedema is fairly rare.
3. Emotional and psychological distress is common, so therapists should screen for it and refer on where needed.
4. Manual lymphatic drainage does not reduce limb size, but in the author's experience it can ease tenderness after 6 to 8 sessions.
5. A graded exercise programme that the patient enjoys is recommended, and exercise in water is particularly helpful.
6. Compression should be part of the daily routine; textured or flat-knit garments may be more comfortable.
7. Weight management matters, but short-term diets should be avoided because they usually lead to weight regain.
8. Liposuction should be reserved for considerable disability after 12 months of conservative care, stable weight for 12 months and a psychological assessment.
9. Liposuction is generally not recommended with a BMI over 35 and central obesity, and patients should check a surgeon's qualifications and track record.
10. Patients should take a leading role in their own care, supported by therapists who show empathy rather than blame.
Download PDF: Therapy for lipedema: incorporating new clinical guidelines
Point-counterpoint: debating lipedema
Dr Karen L Herbst and US colleagues, with a reply from Dr Tobias Bertsch, Gabriele Erbacher and Guenter Klose.
Pathways, Canadian Lymphedema Framework, Spring 2021 (letters to the editor) · 8 pages
10 key takeaways
1. A published exchange of letters showing that lipoedema specialists still disagree on several key points.
2. Dr Herbst and colleagues argue that lipoedema tissue does hold extra fluid, bound within the tissue rather than free.
3. They argue that manual lymphatic drainage using deeper techniques can reduce volume and pain.
4. They say not all women with lipoedema are obese, and that experienced clinicians can tell lipoedema from obesity by feeling for nodules in the tissue.
5. They call for earlier diagnosis, including screening of younger women.
6. They argue lipoedema fat can appear before pain, and that anxiety and depression can follow from it.
7. They state that liposuction by a skilled surgeon removes diseased fat and brings long-term gains in pain, mobility and quality of life.
8. In reply, Dr Bertsch, Ms Erbacher and Mr Klose say the studies cited concern lymphoedema or obesity rather than pure lipoedema.
9. They restate that most patients with lipoedema are obese and that weight loss, including after bariatric surgery, reduces leg volume.
10. They argue that liposuction studies are mostly by surgeons and poorly controlled, and that patients considering surgery should be told this.
Download PDF: Point-counterpoint: debating lipedema
Response to the Letter to the Editor regarding Lipoedema: myths and facts
Dr Tobias Bertsch and Gabriele Erbacher (Földi Clinic, Germany).
Phlebologie 2021; 50: 7–11 (published online October 2020) · 5 pages
10 key takeaways
1. The authors of the 'Lipoedema: myths and facts' series reply to a critical letter from US physician Dr Karen Herbst.
2. They argue there is no reliable evidence that lipoedema is a connective tissue disease with fluid bound in the tissue.
3. They cite ultrasound, MRI and tissue studies that found no fluid build-up in pure lipoedema.
4. They say compression and exercise help through anti-inflammatory effects, while any benefit from manual lymphatic drainage alone is unproven.
5. Painless enlargement of the legs is, in their view, lipohypertrophy rather than lipoedema.
6. They report that over 80% of patients diagnosed with lipoedema are obese, and that severe obesity can itself cause lymphoedema.
7. In their study of 150 patients, 80% had psychological problems that began before lipoedema pain.
8. They consider liposuction inappropriate with a BMI over 35 and central obesity, where bariatric surgery should be considered instead.
9. They reject the ideas of 'abdominal lipoedema' and 'whole-body lipoedema'.
10. They raise concerns about the influence of well-funded US patient organisations on lipoedema research and guidance.
Download PDF: Response to the Letter to the Editor regarding Lipoedema: myths and facts