As an organisation working with people who have lipoedema, we know that:
- Some people with lipoedema have symptoms for many years before being correctly diagnosed and signposted to appropriate services
- Living with unexplained changes in body fat and shape that do not respond to exercise and weight loss strategies, often from teenage years, may be associated with a significant history of disordered eating patterns and mental health problems including depression
- The language of ‘obesity’, sometimes used by health professionals when they first meet someone with lipoedema, is unhelpful.
Here you will find information about making a diagnosis of lipoedema, assessing, and examining someone with lipoedema, including a video consultation. Scroll down the page to find more about specific topics: weight gain; mental health; compression therapy; diuretic use. There is also a link to a further page with current evidence about lipoedema pathophysiology and the UK Best Practice Guidelines on Lipoedema (Wounds UK 2017).
Talk Lipodema has produced a download for healthcare professionals that includes a print-off information page that can be given to someone with lipoedema. Click here to download.
Making a diagnosis of lipoedema
Diagnosis is based on history and clinical examination as currently there are no validated diagnostic tests or biomarkers for lipoedema. In the video below, Dr James Torrens, a GP in Scotland, is examining Karen and Jo, two women living with lipoedema.
Assessment of someone with lipoedema should include:
- Details of initial onset; present since puberty or other hormonal trigger/s including pregnancy, contraception?
- Family history on maternal or paternal side?
- Impact on personal, home and work life
- History of psychological vulnerability or mental health challenges that triggered/pre-dated lipoedema, or influence current quality of life and ability to maintain a healthy weight?
- History of dieting, issues with food sensitivities.
- History of oedema swelling due to fluid indicating secondary lymphoedema and possible history of cellulitis. There is evidence that oedema affects around 27% and is more common in over 35 years where lipoedema has been present for 20+ years
- Medications including contraceptives, calcium channel blockers that influence oedema
- Understanding of their condition
For Karen it was a relief to eventually get a diagnosis
Examination of someone with lipoedema
Look for characteristic tissue changes with loss of ankle shape, fat deposition at knees, buttocks, and sparing of feet. Consider the following:
- Extent of lipoedema changes: does this include abdomen, hips, arms?
- Palpation of tissues: tissues may feel very soft (rather than fibrotic in lymphoedema); or cold due to insulation of the fat layer; lipomas may be felt
- Signs of varicosity, bruising common is around 90% (Grigoriadis et al 2021)
- Pain or hypersensitivity on pressure common in around 71% (Grigoriadis et al 2021)
- Negative Stemmer’s sign (unless complicated by lymphoedema)
- Signs of lymphoedema including pitting or non-pitting tissues
- Possible signs of hypermobility (EDS may be an additional problem).
Body shape and disproportion (upper body out of proportion with lower)
- Overpronation of feet, and associated problems
- Gait is influenced by shape change such as fat lobes at the knees
- General obesity which is more evenly distributed without body disproportion
- Lymphoedema which may have more obvious primary or secondary cause although lipoedema can also lead to secondary lymphoedema
- Oedema related to cardiac, renal, hepatic causes.
- Pre-menstrual oedema, drug-induced swelling; Madelung, CVI, Dercum’s, polycystic ovary, lipodystrophy that cause lipohypertrophy
Exclude/red flags: DVT, cellulitis
Information sheet on Lipoedema
This is a useful resource for healthcare professionals and people living with lipoedema
Download information here Information about Lipoedema for Healthcare Professionals
Possible investigations/measurement to consider:
- Circumferential measurements of limb/s and limb volume
Mainly required if compression is being ordered or treatment outcome measured
- Blood tests
U & Es, full blood count, thyroid function, liver function, brain natriuretic peptide to exclude cardiac function, C-reactive protein may be useful only in acute inflammation
May provide indication of extent of lymphatic insufficiency but unlikely to influence treatment plan
Helps indicate dermal thickness to differentiate lymphoedema and lipoedema
May provide differential diagnosis but not routinely required
- Venous duplex scanning
May be indicated to exclude venous insufficiency
May be required if the person is to have compression therapy.
Weight gain in lipoedema
As well as changes in ‘lipoedema fat’, generalised weight gain does affect many women with lipoedema who can find it difficult to lose weight. Lipoedema is not necessarily progressive but will worsen when someone gains weight (Bertsch and Erbacher, 2020). Grigoriadis et al (2021) have identified that further work is required to explore the possible genetic influences on weight and generalised body fat in lipoedema. When they do lose weight, most women with lipoedema find that the disproportionate lipoedema shape becomes more obvious. Some women who exercise and build muscle mass may also increase their weight accordingly.
A UK survey of 190 women with lipoedema (Alsop and Smith 2019) showed that 25% had seen a dietician although 80% of these did not find this helpful. Over 45 different diets had been followed by respondents, with disordered eating patterns 3.1 times more likely than in the normative population of women.
Support with healthy weight management is key; stress and psychological conditions may influence motivation, and some women may wish referral to specialist support. At Talk Lipoedema, we understand that short term ‘yo-yo’ dieting will be ineffectual and we recognise the importance of eating to reduce inflammation in lipoedema. Our focus is on supporting women to make health choices around food and physical activity as part of an individualised and person-centred approach to self-management of lipoedema.
Mental health in lipoedema
Several studies indicate that mental health problems such as depression, anxiety and disordered eating are associated with lipoedema. There are also suggestions that a significant number of people with lipoedema may report mental health issues manifesting in the 12 months prior to the start of their lipoedema symptoms. Mental health problems are likely to influence pain and ability to self-manage lipoedema. At Talk Lipoedema, we find that women with lipoedema are relieved to find they are not alone, and this is a first step to managing their mental health. We are also committed to establishing future expertise in our partnerships with NHS psychology, mental health, physical activity services, and other charities such as BEAT.
Compression in lipoedema
Compression is important in helping to reduce inflammation and manage pain in people with lipoedema. Some people wear it daily, and most need a regular supply of garments, possibly in a variety of styles. In those with secondary lymphoedema, compression is essential to tissue decongestion, improving lymph drainage and reducing complications such as cellulitis and fibrosis. Long term compression use is essential after liposuction.
In lipoedema a wide range of compression types and styles are used, including stockings, arm sleeves, adjustable wraps, and bandaging systems. Many companies have recently identified specific garments and materials for lipoedema. Accurate measuring and fitting are required, and most are custom made, and can be prescribed on GP10/FP10. More details are listed in the section on compression.
Diuretics in lipoedema
Diuretics are not indicated in lipoedema unless required to manage specific co-existing conditions such as cardiac failure, or high blood pressure.
Want to know more about Lipoedema?
Read more about current evidence here