Although the condition was first described in medical journals in 1941, and it's estimated up to one in 11 women suffer from this disease, it doesn't feature as a part of most medical curriculums. Most doctors are unfamiliar with it.

In fact, doctors are so unaware of this diagnosis, it's frequently misdiagnosed as obesity or lymphodema and therefore, the debilitating symptoms aren’t addressed. Symptoms include pain on movement and exercise, swelling and heaviness, fatigue, lower resting metabolic rate, easy weight gain and body fat that doesn't respond to diet and exercise.

Rather than believed, these women feel fat shamed by their doctors, who diagnose obesity due to diet and lifestyle, when research shows lipoedema fat does not respond to diet and exercise. Although obesity does frequently appear with lipoedema, they are different conditions.

The oversight of this condition is classic example of how women have not been believed and ignored by the medical field.

Lipoedema fat cells behave differently to regular fat cells. It occurs almost exclusively in women, though has been observed in some men that have higher than usual feminine hormone profile. The lipoedema fat cells are prone to inflammation, and are less effective at lymphatic drainage. The disease is thought to be a connective tissue disorder, and is most likely genetic. The fat cells grow symmetrically on either side but disproportionately in the top and bottom halves. These women have big legs, and proportionately small waists. Their skin is very soft and spongy creating a more dimpled appearance. As the disease progresses lumps and bumps of fat can usually be felt, like pearls or peas under the skin. In its most extreme stages, the legs are disfigured with undulating overhangs of fat protruding out over the hips, thighs and knees. The fat is painful when pressed, or with movement and walking. Hypermobility of joints is also associated with lipoedema. This leads to joint pain, arthritis and other mobility issues. Often the lack of mobility leads to further weight gain, and the disease gets worse and worse. In the later stages these women often don't fit into clothes off the rack due to disproportion. Psychological distress is a large side effect of the illness, with women feeling embarrassment, rejection and shame.

Usually, lipoedema begins with a large bum and hips and makes its way down the legs until the legs are columnar in appearance, or like sausages. Some women have it all the way to the ankles from a young age. Lipoedema will appear in the upper arms as well, particularly as the women age. Its onset is associated with hormonal events, and usually appears at puberty, and often worsens with pregnancy and menopause.

Women with lipoedema can lose normal fat with diet and exercise, and so they do lose weight, but the lipoedema fat remains and disproportion is persistent.

An anti-inflammatory diet, exercise, lymphatic drainage massage and wearing compression tights can help reduce pain and swelling, and prevent or slow progression of the disease. The only way to get rid of the inflammatory lipoedema fat is to remove it surgically with tumescent liposuction.

Research has found that liposuction significantly reduces lipoedema associated pain, enhances movement, quality of life, physical appearance and mental wellbeing.

Currently liposuction for lipoedema is not recognised by medicare, or covered by any health insurance within Australia. The Lipoedema Australia* organisation are campaigning to have this illness recognised for what it is, but until then, unless able to afford the significant costs of liposuction, and with so little knowledge amongst doctors, affected women continue to suffer without support.

There is hope

A recent trial of women on a low carbohydrate, Mediterranean style diet had good results with wellbeing, reduced symptoms of pain, and successfully lost weight over a four week period.

The women concentrated on seasonal fruit and vegetables, wholegrains, nuts, legumes and olive oil and small amounts of animal protein.

All alcohol, most saturated fats, sugary foods, and processed foods and meats were avoided.

A focus on not gaining weight is important, but this isn’t as dire as it sounds.

Consuming an anti-inflammatory diet such as the one described above, making sure you get fresh air, movement and exercise, and investing in some compression tights can go a long way to reducing symptoms.

A high anti-oxidant, anti-inflammatory diet, with minimal alcohol and processed sugars does wonders for lipoedema and general wellbeing.

I’ve had my own journey with this condition which I will be sharing more of in the weeks to come as well as sharing naturopathic treatment options.

If you suspect you may suffer from lipoedema and would like support, book in for a naturopathic consult and together we can figure out the best way forward.

References

Herbst K (2012), Rare adipose disorders masquerading as obesity, ACTA Pharmacologica Sineca,

Di Renzo, L. et al. (2021) ‘Potential effects of a modified mediterranean diet on body composition in lipoedema’, Nutrients, 13(2), pp. 1–19. doi: 10.3390/nu13020358.

Torre, Y. S. D. La et al. (2018) ‘Lipedema: Friend and foe’, Hormone Molecular Biology and Clinical Investigation, 33(1). doi: 10.1515/hmbci-2017-0076.

*wwwlipoedemaaustralia.com.au