Decoding lipedema: from hidden causes to hopeful treatments

Understanding and managing lipedema: insights into causes, symptoms and treatment options

The history of lipedema

Lipedema is a chronic condition characterised by abnormal fat deposition primarily in the arms, hips, buttocks, and thighs, while sparing the hands and feet.

For decades little was known about this condition but in the last two decades and especially since 2015 research into lipedema as well as awareness by doctors and patients has increased exponentially.

Lipoedema, first described in 1910 by Irving Phillips Lyon as "adipose" or "lipomatosis," was formally delineated in 1940 by Edgar Allen and Edgar Alphonso Hines Jr. as a distinct syndrome involving fat legs and orthostatic edema.

Symptoms include pain, bruising, edema, and subcutaneous nodules, which are resistant to conventional interventions like diet and exercise.

Despite its recognition for over 80 years, lipedema was only included in the International Classification of Diseases (ICD-11) in 2019 under "Certain noninflammatory disorders of subcutaneous fat."

The recently published paper presented in this article provides an extensive overview of lipedema, its potential causes, its management and its treatment.

Who suffers from lipedema?

Lipedema predominantly affects women, with prevalence estimates ranging from 0.06% to 10-11% globally, and up to 39% in countries like Germany. In Brazil, an estimated 12.3% of women (approximately 8.8 million in 2021) may exhibit symptoms suggestive of lipedema.

[Obviously, such wild differences in prevalence show not just variation between countries but also varying incidents of diagnosis. In some cases there is probably over-diagnosis, potentially medicalising plain localised adiposity with no actual medical symptoms. And in some cases there is under-diagnosis, which means women miss out on proper management and treatment.]

The condition is rare in men, with fewer than 10 documented cases, often linked to specific medical conditions or idiopathic presentations.

Increased awareness, driven by online information and medical focus, has improved recognition, yet comprehensive understanding remains incomplete. The aetiology (causes) of lipedema is multifactorial and not fully clarified, involving genetic, hormonal, and microvascular factors.

Causes of lipedema: genetic predisposition

Lipedema exhibits a strong genetic component, with 64% of affected women reporting a positive family history, suggesting autosomal dominant inheritance.

Syndromic forms, such as Sotos syndrome (linked to NSD1 gene mutations), have been identified, but no specific gene directly causing lipedema has been pinpointed.

Causes of lipedema: Hormonal factors:

LIpedema’s female predominance and onset during hormonal fluctuations (e.g., puberty, pregnancy, menopause) highlight estrogen’s role.

Dysregulated estrogen receptor signaling increases glucose and fatty acid uptake, angiogenesis, and fat storage while reducing lipolysis and mitochondrial formation, leading to adipocyte hypertrophy.

Causes of lipedema: adipocyte dysfunction

Lipedema is marked by adipocyte hypertrophy, and occasionally hyperplasia, driven by genetic, hormonal, and inflammatory processes.

Studies show increased macrophage presence, interstitial fibrosis, and expression of inflammatory proteins like MIF-1, distinguishing lipedema’s low-grade inflammation from obesity.

Causes of lipedema: microvascular dysfunction

Primary dysfunction in lymphatic and blood capillaries contributes to edema and inflammation. Increased angiogenesis, capillary permeability, and lymphatic vessel dilation are observed, particularly in obese patients. This leads to tissue hypoxia, adipocyte necrosis, and fibrosis, exacerbated by mechanical factors like prolonged standing.

Lipedema vs lymphedema vs chronic venous insufficiency (CVI)

Lipedema is distinct from lymphedema and chronic venous insufficiency (CVI), which they may coexist especially in progressed lipedema cases, complicating diagnosis.

Lymphedema involves lymphatic fluid accumulation, while CVI results from inefficient venous return, both potentially worsening lipedema’s symptoms.

Lipoedema symptoms

Lipedema presents with a gynoid (female-type) fat distribution, causing disproportionate limb hypertrophy, particularly in the legs. Key clinical manifestations include:

  • Oedema / water retention

  • Easy bruising

  • Painful gait and joint stress

  • Abnormal fat distribution resistant to weight loss

  • Lower prevalence of metabolic diseases like diabetes (as we know lower body fat protects from diabetes, at the expense of further fat accumulation in the area)

Lipoedema diagnosis

Diagnosis relies on medical history and clinical examination due to the absence of specific biomarkers.

The Lipedema Symptom Assessment Questionnaire (LSyQu) aids screening by evaluating body perception and symptom patterns

Physical examination involves inspection and palpation, noting adipose tissue distribution, edema, and pain. Clinical criteria include disproportionate limb hypertrophy, preservation of hands and feet (cuffing phenomenon), pain on pressure, and a tendency to bruise.

Lipedema is classified into types based on fat distribution (lipedema types 1-5) and stages based on severity (lipedema stages 1-4).

Imaging, such as high-resolution ultrasound, differentiates lipedema from lymphedema by assessing dermal thickness and echogenicity. Dual-energy X-ray absorptiometry (DXA) and histological analyses further support diagnosis by evaluating fat mass and tissue characteristics.

Lipedema types

  • Type I: Accumulation of adipose tissue around the hips and buttocks

  • Type II: Accumulation of adipose tissue spanning from the hips to the knees

  • Type III: Accumulation of adipose tissue with a hip-to-ankle phenotype

  • Type IV: Accumulation of adipose tissue even in the arms

  • Type V: Predominance of fat exclusively in the calf region

Lipedema stages

  • Stage I: Smooth skin with small nodules, reversible edema (does not visibly differ from normal fat)

  • Stage II: Irregular or wrinkled skin with walnut-sized nodules, reversible or irreversible edema

  • Stage III: Thickened and hardened skin with disfiguring fat deposits, often associated with functional limitations

  • Stage IV: Lipolymphedema, development of lymphedema concomitant with lipedema

Conservative treatment for lipedema management

No “cure” exists for lipedema; management focuses on symptom relief, preventing progression, and improving quality of life through conservative and surgical approaches. Conservative treatments include:

  • Lifestyle and physical activity: Weight control and physical activities like swimming and strength training are recommended, as patients often have high body mass indices and reduced muscle strength.

  • Nutritional Education: Diets like the ketogenic and modified Mediterranean diets (lower calories, high antioxidant intake) show promise in reducing adipose deposition and inflammation.

  • Physiotherapy-based approaches:

    • Complex decongestive therapy / CDT: combining manual lymphatic drainage / MLD, compression therapy, exercises, and skin care, CDT reduces limb volume, pain, and inflammation [this is geared towards more severe lipedema]

    • Graduated compression garments: essential for managing lymphatic dysfunction, graduated compression garments (10-40 mmHg depending on stage) improve venous return and reduce edema [great as a temporary method but problematic for long-term daily use]

    • Energy based treatments: techniques like extreme intensity radiofrequency, extreme intensity HIFU and cryolipolysis lack proven efficacy and may cause paradoxical adipose hyperplasia [in contrast, the combination of deep-acting, high-power radiofrequency and deep-acting, high-power ultrasound cavitation with high-power LED phototherapy, as used at our clinic, has been found to reduce symptoms and improve quality of life]

    • Pressotherapy: effective in reducing limb volume and symptoms, comparable to CDT [great in treating water retention in all but the most severe cases]

    • Vibration therapy: low-frequency vibration combined with MLD reduces limb circumference and improves lymphatic flow [not that effective, necessary or easy or source as other methods presented here]

    • Manual therapy (i.e. massage stronger than MLD and specific to the adipose tissue): mobilises fibrous adhesions, improving subcutaneous tissue structure [far better than MLD for all but the most severe cases]

    • Shock Wave Therapy (ESWT): massages the skin and helps reduce fibrosis cytokines [but its effectiveness is quite exaggerated - ESWT is for hard tissues, not soft tissues like lipedema adipose tissue]

    • Photobiomodulation (red and infrared light therapy): shows potential in reducing pain and fibrosis [safe and pleasant but effective only when used frequently; ideal to combine with all the other modalities and especially RF and ultrasound]

  • Pharmacological and supplemental treatments: Non-steroidal anti-inflammatory drugs / NSAIDs (ibuprofen, diclofenac etc) and curcumin manage pain and inflammation, metformin appears to have an antifibrotic effect, while flavonoids like diosmin improve microcirculation. Herbal supplements like centella asiatica reduce swelling.

Surgical treatments for lipedema reduction and management

  • Liposuction: The primary surgical intervention, liposuction (using tumescent technique) removes abnormal adipose tissue, reducing limb volume, pain, and edema while improving mobility and quality of life. Complications (e.g., bleeding, infection) are generally low but require post-liposuction treatments, such as lymphatic massage and phototherapy to begin with (from day 2-3) and stronger massage, ultrasound and radiofrequency later (after 8 weeks).

  • Varicose vein treatment: Addressing varicose veins before lipedema surgery minimises complications like bleeding and deep vein thrombosis, using methods like compression stockings or minimally invasive procedures, such as sclerotherapy, radiofrequency, laser ablation and phlebectomy (partial vein removal).

Lipedema patient education

Psychological support is vital, as lipedema impacts mental health, often causing anxiety and depression. Education on the condition’s chronic nature aids in managing expectations.

Conclusion

Lipedema remains a complex, under-diagnosed condition requiring a multimodal approach for effective management.

Advances in understanding its pathophysiology - genetic predisposition, hormonal dysregulation, adipocyte hypertrophy, and microvascular dysfunction - have informed diagnostic and therapeutic strategies.

Conservative treatments, particularly CDT and compression therapy, are important in the more severe cases, while liposuction offers significant symptom relief in advanced cases.

However, the lack of randomised controlled trials and standardised protocols underscores the need for further research to establish safety, efficacy, and long-term outcomes.

This review highlights the importance of continued investigation to refine diagnostic criteria and develop targeted treatments, ultimately improving the quality of life for those affected by this challenging condition.

Lipedema: Exploring Pathophysiology and Treatment Strategies - State of the Art

  • Research paper link": https://pubmed.ncbi.nlm.nih.gov/39866170/

  • Abstract: Lipedema is characterized by abnormal fat deposition in areas such as the arms, hips, buttocks, and thighs, sparing the hands and feet. Symptoms include pain, bruising, edema, and subcutaneous nodules, which resist traditional interventions such as diet and exercise. Despite increasing recognition, comprehensive understanding, including pathophysiological, clinical, and therapeutic aspects, has not been fully achieved. This review aims to fill gaps in knowledge of this field, to support more informed management of lipedema. This narrative review provides a deeper understanding of lipedema treatment, addressing pathophysiology and therapeutic options. The data reveal advances in knowledge, especially regarding conservative and surgical treatments, focusing on improving quality of life. However, scientific evidence supporting the safety and efficacy of various treatments is lacking. Additional research is needed to ensure safety and to enhance efficacy of management of this complex condition.

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