Most patients who notice the first signs and symptoms of lipedema read about it on the internet first. After that, they try to find a healthcare professional who is able to diagnose this disease, which can be a roller-coaster in itself. The first point of contact might be their general practitioner or an experienced nurse. Specialized healthcare professionals can be required to rule out other diseases, such as lymphedema, obesity, heart failure, kidney or liver dysfunction, or venous diseases. All these conditions can present similarly to lipedema or can appear together with lipedema.
Who can diagnose lipedema?
How is lipedema diagnosed?
There is no specific test to confirm the diagnosis of lipedema, which can make it difficult for healthcare professionals. However, the medical history and a physical exam are usually sufficient to diagnose lipedema.
Typically, healthcare professionals ask questions about when the first symptoms were noticed, how they affect daily life on a physical or psychological level, any medication one might be taking at the moment, and if female members of the family have experienced similar symptoms.
The physical exam should include the following steps:
- Check-up of your limbs, including palpation of the tissue
- Weight measurement, including the waist-to-height ratio
- Mobility and range of motion
- Check-up of your blood circulation (arteries and veins)
- Assessment of your skin
Advanced diagnostic tools are ultrasound scans to evaluate the tissue, X-ray measurements of the lymphatic system (lymphography), venous duplex ultrasound to evaluate the vein function or lymphoscintigraphy, a method using nuclear medicine to visualize the lymph drainage and the lymph nodes.
Lipedema versus lymphedema – what’s the difference?
Lipedema and lymphedema have different characteristics that are summarized in the following table:
Lipedema
Gender:
Occurs in women.
Onset:
Usually starts with phases of weight gain often connected to hormonal changes: puberty, birth control pills, pregnancy, menopause.
Signs and symptoms:
Both legs (or rarely the arms) are affected in the same way. The limbs are often painful and tender to touch.
The affected area feels different from normal body fat: it feels cooler, softer, and can appear dimpled like orange-peel.
Family history:
Female family members often have similar signs and symptoms.
Lymphedema
Gender:
Occurs in both men and women.
Onset:
Occurs after cancer treatment, due to obesity, trauma, wound or skin infections, or other infections (secondary lymphedema). In rare cases, lymphedema is caused by a genetic reason (primary lymphedema). The first signs then occur when the lymph system can no longer cope with the strain.
Signs and symptoms:
Lymphedema can also affect only one arm or leg (but may also occur in other areas of the body). Typical signs include swelling, feeling of heaviness or tightness, aching, or skin changes.
The affected area feels different from normal body fat: it feels cooler, softer, and can appear dimpled like orange-peel.
Family history:
As a result of genetics, family history only plays a role with primary lymphedema.
Complications of lipedema
Lipedema is a long-term disease that can’t be cured. It can be difficult to find a healthcare professional who takes the condition seriously and is aware of the appropriate treatment. Complications, risks or consequences of lipedema are:
- Gaining more weight: which, in turn, increases the risk of other diseases, and can also worsen the lipedema symptoms
- Limited social life: dissatisfaction with your own body and the painful sensation in the affected limbs can make it difficult to participate in daily life
- Mental distress: including chronic stress, depression, and anxiety can worsen your symptoms, especially the perception of pain
- Joint problems: being overweight and experiencing painful sensations can make it difficult to stay active and exercise regularly
- Failed diets: trying to lose weight following a strict diet often leads to the ‘yo-yo-effect’, which can result in a higher weight than before
However, lipedema can usually be well-managed with a holistic approach. Learn more about lipedema management here.
