Lipoedema: Understanding the Hormonal and Genetic Links

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We are getting a trickle of questions around hormonal influence on a condition called lipoedema.  Whilst we are not experts in this condition, these questions have encouraged us to go looking and we thought we would share what we have learnt.  Lipoedema became a formal medical diagnosis in 2022 when the World Health Organisation added a lipoedema diagnosis to the International Classification of Diseases, 11th revision, it was however, first described in the 1940s.  

What is Lipoedema?

Lipoedema is a chronic medical condition that causes an abnormal and symmetrical accumulation of fat, primarily in the hips, buttocks, thighs, and sometimes the arms, sparing the hands and feet. It almost exclusively affects women, and its fat distribution does not respond well to traditional weight loss through diet and exercise. It is often misdiagnosed as obesity or lymphoedema, leading to frustration and delayed care.

Common Symptoms:

  • Symmetrical enlargement of the legs or arms
  • Soft, tender fat that bruises easily
  • A “step-off” at the ankles or wrists, where swelling abruptly stops
  • Pain, heaviness, and fatigue in affected limbs
  • Disproportionate body shape (smaller upper body with larger lower body)

When Was Lipoedema Recognised as a Disease?

  • 1940: First medically described by Drs. Allen and Hines at the Mayo Clinic.
  • 2015–2017: Some European countries (e.g., Germany) began formally recognising it in insurance and clinical guidelines.
  • 2022: Lipoedema was officially included in the World Health Organization’s ICD-11 classification (EF02.2), marking global recognition as a distinct medical condition.

What Causes Lipoedema?

The exact cause of lipoedema remains unclear, but it likely results from a complex interplay between genetic, hormonal, and microvascular factors.

Hormones and Lipoedema

Lipoedema often starts or worsens during times of hormonal change, such as:

  • Puberty
  • Pregnancy
  • Menopause
  • Use of hormonal contraceptives or hormone replacement therapy

🔬 Oestrogen’s Role:

  • Oestrogen plays a key role in female fat distribution, especially in the lower body.
  • Women with lipoedema may have increased sensitivity to oestrogen, which promotes fat storage in the hips and thighs.
  • Fat cells (adipocytes) in these regions have oestrogen receptors, suggesting that normal hormonal changes might trigger an exaggerated fat response in predisposed individuals.

⚠️ What About Hormone Therapy?

  • Some women notice symptom progression with the use of oral contraceptives or HRT.
  • However, there is no solid evidence that hormone therapy causes or reverses lipoedema.
  • Hormonal manipulation is not currently a treatment option, but clinicians should be aware of the timing of symptom onset.

Genetics and Lipoedema

There is strong evidence that lipoedema runs in families, with an estimated 60–70% of patients having a first-degree relative with similar symptoms. This suggests a heritable pattern.

Diagnosis

distinguishing features include:

  • Symmetrical fat accumulation sparing the feet/hands
  • Painful or tender fat
  • Minimal response to calorie restriction

Tests like ultrasound or MRI can help rule out other conditions, such as lymphoedema or obesity-related fat deposition.

Treatment and Management

There is no cure, but symptoms can be managed with a combination of approaches:

Conservative Treatments:

  • Compression therapy (stockings or wraps)
  • Manual lymphatic drainage (MLD)
  • Exercise (especially swimming, walking, and cycling)
  • Nutritional support to manage inflammation and fluid retention

Surgical Treatment:

  • Tumescent liposuction or water-assisted liposuction performed by specialists has been shown to reduce fat volume, improve mobility, and relieve pain in selected patients.

Psychological Support:

  • Body image distress, chronic pain, and misdiagnosis can lead to anxiety or depression. Psychological support and support groups are vital components of care.

Conclusion

Lipoedema is a real, chronic fat disorder with strong ties to female hormones and likely a genetic basis. Awareness is growing, and global recognition of the condition means more women are now being properly diagnosed. While treatment is not curative, it can lead to substantial improvement in pain, mobility, and quality of life.

If you suspect you or someone you know may have lipoedema, speak with a healthcare professional familiar with fat disorders and lymphatic medicine. Early diagnosis and management can make a meaningful difference.

We would recommend this website for more information and resources: 

https://www.lipedema.org

https://healthify.nz/health-a-z/l/lipoedema

A nurse colleague with lipoedema has made the following local recommendations:

Local therapy:
https://ladylymph.co.nz/

https://www.marwellness.co.nz

https://www.lagomclinic.co.nz

Surgeons:
Mr Ken Macdonald
KM Surgical
Christchurch

https://www.kmsurgical.co.nz/Procedures-and-Treatments/All-Procedures-and-Treatments/L/Lipoedema

Mr Patrick Lyall
Dunedin

https://www.enhanceme.co.nz/about

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