Weight Management & Nutrition
It’s important to highlight that Lipoedema is distinct from obesity. However, weight management is relevant to Lipoedema because the abnormal build-up of fatty tissue in Lipoedema is typically resistant to conventional weight-loss diets, and because women with Lipoedema are at higher risk of developing obesity. Poor nutrition and eating disorders (both over- and under-eating) are not uncommon among women with Lipoedema.
Lipoedema is not caused by poor food choices. However, it’s good for everyone – including people with Lipoedema – to maintain a healthy diet and weight by leading a lifestyle that incorporates a balanced diet. Rather than following a strict regime, it is advisable to avoid highly processed foods (HPF). Several studies suggest that following an anti-inflammatory or Keto diet can be helpful in managing Lipoedema symptoms, but no specific diet has yet been proved to remove Lipoedema fat. Lipoedema UK is currently partnering with De Montfort University in a study into the effects of inflammatory foods on Lipoedema. This long-term, ongoing study is led by Dr Yannan (Jessica) Jinn.
More research is needed, but there is some evidence to suggest that avoiding HPF and eating whole foods and plant-based, anti-inflammatory foods can be helpful with symptoms and general wellbeing.
Lipoedema or obesity?
Many women with differing stages of Lipoedema have reported not being correctly diagnosed until later in life. Prior to diagnosis, their symptoms were often wrongly put down to obesity, which denied them access to the correct diagnosis, treatment and advice. Some women also describe how their misdiagnosis led to self-blame. However, obesity and Lipoedema can coexist, so an individual may be both obese and have Lipoedema.
Lipoedema is a chronic genetic fat disorder which appears to be linked to the female hormone oestrogen. It develops and often progresses around periods of hormonal change in the body, namely puberty, pregnancy and menopause. It is important to realise that Lipoedema itself is not caused by poor dietary issues.
In obesity, excessive fat distribution occurs all over the body. In Lipoedema, for reasons not yet fully understood, excessive fat production occurs only in specific areas of the body. The distribution of fat can vary from one individual to another, as can the severity. The onset of symptoms can develop fairly quickly and the change in body shape may sometimes be quite dramatic. The additional fat deposits predominantly affect the buttocks, thighs and lower legs. Frequently fat pads develop on the outer thighs, just below the hips or on the inner knees. However, the excess fat often stops abruptly at the ankles, resulting in the appearance of a fatty cuff, sometimes described as a ‘bracelet’ or ‘elastic-band effect’. The feet are normal unless oedema has started to develop. The arms are also frequently affected, but the hands are spared. As a result of the excessive fat deposition, Lipoedema often has a very characteristic feature whereby the lower body is considerably larger and generally out of proportion to the upper body. This feature does not occur in obesity.
Obesity responds well to diet and exercise, and weight loss is experienced usually from all areas of the body, but sadly in Lipoedema this is not the case. While weight loss will occur in some parts of the body, minimal improvement will occur from areas affected by Lipoedema. Attempts at weight loss will often only exacerbate the disproportion between upper and lower body. Unlike normal obesity, Lipoedema fat deposits do not respond to calorie-restricted diets or vigorous exercise. This is another unique and useful tool in distinguishing Lipoedema from obesity.
Lipoedema fat cells show characteristics that do not appear in general obesity. In Lipoedema, the tiny blood capillaries supplying the fat cells are particularly fragile and easily become damaged. As a result, bruising readily occurs on the legs, often following a minor trauma or sometimes for no apparent reason at all. This tendency does not occur in generalised obesity as there is no abnormality of the blood capillaries.
Some people find that areas of their body affected by Lipoedema are frequently tender, and pain may be experienced by only the slightest touch. Again, this distressing feature does not occur in general obesity. To read a 2024 research paper on pain in Lipoedema patients, click here. (Dinnendahl R, Tschimmel D, Löw V, Cornely M, Hucho T (2024), ‘Non-obese lipedema patients show a distinctly altered quantitative sensory testing profile with high diagnostic potential’, PAIN Reports.)
The reason pain develops is that the blood capillaries surrounding fat cells are not only fragile in Lipoedema, but they are also hyperpermeable. As a result, protein molecules leak out of the capillaries into the intercellular spaces between the fat cells. Proteins have the ability to attract additional fluid, and this causes the minute lymphatic vessels within the layers of fat to work at a higher level to remove the excess fluid. Eventually, the lymphatic vessels become damaged and can no longer cope with the excessive fluid that needs to be transported. Consequently oedema develops between the fat cells, resulting in increased pressure and inflammation in the tissues, causing pain and discomfort.
Click here to read more about Lipoedema-associated pain symptoms and weight. (Gensior MHL, Cornely M (2019), ‘Pain in lipoedema, fat in lipoedema and its consequences: Results of a patient survey based on a pain questionnaire’, Handchir Mikrochir Plast Chir.)
BMI is a widely used tool that measures a person’s weight in relation to their height. A BMI calculation provides a single number, which the Centers for Disease Control and Prevention (CDC) categorises as follows:
- A BMI of less than 18.5 suggests the adult in question is underweight
- A BMI of between 18.5 and 24.9 suggests a healthy weight range
- A BMI of between 25 and 29.9 may indicate the adult is overweight
- A BMI of 30 or higher may indicate obesity
However, the CDC also notes that BMI does not assess an individual’s body composition or their health. It is a screening tool for use alongside other tests and assessments to determine potential health risks.
For people with Lipoedema, BMI can be misleading and has limited value due to the falsely high values in the areas affected by Lipoedema. Waist-to-height ratio (WHtR) is increasingly considered a more accurate assessment of the disproportionate fat distribution associated with Lipoedema. However, further research is necessary to establish a standardised criteria for its use in distinguishing Lipoedema from obesity.
The NHS guidelines for calculating your WHtR are as follows. Measure around your waist (just above your belly button), and divide it by your height, measured in the same units (centimetres or inches). A WHtR of 0.5 or higher means you may have increased health risks.
More information about WHtR and Lipoedema can be found in this article published in 2023. (Brenner E, Forner-Cordero I, Faerber G, Rapprich S, Cornely M (2023), ‘Body mass index vs. waist-to-height ratio in patients with lipohyperplasia dolorosa (vulgo lipedema)’, JDDG:Journal der Deutschen Dermatologischen Gesellschaft.)
The lack of awareness of Lipoedema throughout the medical profession is also true in the fields of weight-loss and dietary advice, and can be especially challenging if a patient has symptoms of both, or has been misdiagnosed with obesity.
Weight-loss surgery (also called bariatric or metabolic surgery) is a major operation and should not be undertaken lightly, nor considered before all other options have been ruled out. It is only available on the NHS for people who meet certain criteria, which include a BMI of 40 or more; or a BMI between 35 and 40 and an obesity-related condition such as type 2 diabetes or high blood pressure. Patients must also agree to making healthy lifestyle changes and attending regular check-ups after surgery. For details, consult the NHS.
Weight-loss surgery is a treatment available to people who are very obese. The most common types of this kind of surgery are:
- Gastric band. A band is placed around the stomach so the stomach feels fuller, faster
- Gastric bypass. The top part of the stomach is joined to the small intestine, so patients feel fuller sooner and don’t absorb as many calories from food
- Sleeve gastrectomy. Some of the stomach is removed, so patients cannot eat as much as before, and they feel full sooner
People with Lipoedema should not expect their symptoms to disappear following successful weight loss after bariatric surgery. Lipoedema is a chronic condition, and the disproportionate distribution of adipose tissue that characterises it is often emphasised following weight loss. Click here to read an article on this subject published in 2022. (Cornely ME, Hasenberg T, Cornely OA, Ure C, Hettenhausen C, Schmidt J (2022), ‘Persistent lipedema pain in patients after bariatric surgery: a case series of 13 patients’, Surgery for Obesity and Related Diseases.)
Weight-loss drugs (GLP-1 receptor agonists) and Lipoedema
Weight-loss drugs such as GLP-1 receptor agonists have a potent ability to help patients lose weight. But ongoing shortages combined with increasing demand have raised ethical questions about who deserves access to the drugs.
Semaglutide for weight loss (Wegovy) has launched in eight countries, namely Denmark, Germany, Iceland, Norway, the United Arab Emirates, the United Kingdom, the United States and Switzerland, and was released in Japan in February 2024. Semaglutide for type 2 diabetes (Ozempic) is approved in 82 countries and is often prescribed (off label) to treat obesity.
Many patients with Lipoedema who have co-existing excess weight (obesity) are keen to try the new weight-loss drugs, as personal testimonials from those who have been able to obtain them report good results in reducing non-Lipoedema excess weight and improvements in other symptoms associated with Lipoedema. There have been no published trials of these medicines for Lipoedema, so there is no clinical evidence as to whether or not they are effective.
In the UK, NICE guidelines specify that diabetes patients must be attending a specialist weight-management service, with a BMI in excess of 35, plus at least one weight-related co-morbidity.
In 2023, NICE recommended that doctors stop prescribing appetite-suppressing medications for weight loss due to shortages for patients with diabetes. Doctors were also asked to avoid giving out new prescriptions for GLP-1 agonists for patients with type 2 diabetes. As a result, many GPs and diabetes specialists believe GLP-1 agonists should not be used for weight loss while there is a national shortage.
In December 2023, the Society for Endocrinology and Obesity Management Collaborative UK issued a joint statement of guidance for the phased introduction of new medical therapies for weight management. To read the statement, click here.
Surging demand for drugs that promote weight loss, known chemically as semaglutide, far outpaces supply, increasingly giving rise to concerns about unregulated and counterfeit medicines available on the internet. Counterfeit Ozempic has been found in as many as 16 countries to date, according to the Partnership for Safe Medicines, an anti-counterfeiting group.
Drug companies and authorities around the world are working to tackle counterfeit versions of popular weight-reduction drugs such as Ozempic. Reports by Reuters via Freedom of Information Act (FOIA) requests show patients were harmed after taking fake Ozempic in Belgium, Iraq, Serbia and Switzerland in 2023.
Reports made by Novo to the US Food and Drug Administration showed that people suffered dangerous drops in blood sugar, called hypoglycemia, after taking suspected or confirmed fake versions of the drug. It is extremely important that anyone obtaining any weight-loss drugs only obtains them through a prescription from a reliable source.