What is Lipoedema?
Lipoedema was first described in 1940 as a chronic and incurable condition involving an abnormal build-up of adipose tissue (Allen & Hines, 1940). It typically affects the thighs, buttocks and lower legs, and sometimes the arms, and may, although not always, cause considerable tissue enlargement, swelling and pain. It may significantly impair mobility, the ability to perform activities of daily living, and psychosocial wellbeing. Current conservative management involves encouraging self-care, managing symptoms, improving functioning and mobility, providing psychosocial support and preventing deterioration in physical and mental health and wellbeing.
There is evidence of a genetic predisposition to Lipoedema, as well as hormonal fluctuations. Disease onset is usually puberty but is often not identified and is often associated with chronic venous and lymphatic insufficiency, early degenerative articular disease and obesity. As Lipoedema is not often diagnosed until later stages co-morbidities and psychological issues are also prevalent and are often what is diagnosed whereby Lipoedema is the primary disorder.
The course of Lipoedema over time is not fully understood, but is highly variable and unpredictable. The condition may progress relentlessly in some patients, and yet in others the only symptom is a relatively minor increase in subcutaneous fat that remains stable for many years (Langendoen et al, 2009; Dutch Guidelines, 2014).
Recognising the symptoms
Symptoms vary, and not all women will experience all symptoms. Rather a combination and increasing severity as and if the disease progresses.
- Symmetrical accumulation of fatty tissue in legs usually from waist to ankles. Feet are not affected, with distinctive fat rings around ankles (if Lipolymphoedema is present this may differ). Lipoedemic fat accumulation can occur in upper arms, with fat ring around wrists
- Legs can be hypersensitive to touch and pressure
- Lipoedemic fat pads accumulate on upper outer thighs, inner thighs and above, below and inside the knee – often causing abnormal gait and joint pain
- Loss of the concave spaces either side of the Achilles tendon
- Non-pitting edema and negative Stemmer’s sign on feet and hands
- Altered skin temperature, texture and appearance
- Restrictive diets have very little effect on Lipoedemic fat
- Bruising easily
Talking to your GP
Many medical professionals are unaware of Lipoedema, however through organizations such as Lipoedema Australia this is gradually changing. Doctors often get confused between Lipoedema and Lymphoedema, though in later stages Lipoedema can progress into what is known as Lipo-Lymphoedema. Lipoedema is often mistaken for obesity which is why recognition and diagnosis is so important.
A diagnosis of Lipoedema is made on clinical grounds that are based on the history and examination of the patient. Currently, there are no known blood or urine biomarkers, nor are there any specific diagnostic tests for Lipoedema (Herbst, 2012a).
You will find a brochure produced by Lipoedema Australia in the Resources section of this website designed especially to take to your medical professional as a referenced guide to Lipoedema. Feel free to print this out for your use.
Principles of Lipoedema management
The main components of Lipoedema management are:
- Psychosocial support, management of expectations and education, including family planning, pregnancy advice and genetic counselling
- Healthy eating and weight management
- Physical activity and improving mobility
- Skin care and protection
- Compression therapy
- Management of pain
- Each element needs to be tailored according to the severity of symptoms, degree and complexity of tissue enlargement, whether there has been progression to lipolymphoedema, and the psychosocial status of the patient.
Choosing a therapist
Lipoedema Australia cannot endorse any particular therapist or therapies. Within our closed Facebook group we are happy to share details of doctors and therapists which are personally recommended by our members. We suggest that you ask your doctor for a referral to see a Lymphoedema specialist at a Lymphoedema clinic or a vascular specialist if you are seeking diagnosis.