There is no specific test or tool to diagnose lipedema. This makes the diagnosis difficult, and many patients struggle without a correct diagnosis for a long time. However, the awareness of the disease among healthcare professionals (HCPs) is increasing.
Who diagnoses lipedema?
Your general practitioner (GP) or an experienced nurse is likely to be your first contact person when you notice any signs or symptoms of lipedema.
Your HCP will do a complete check-up of your body, including the examination of your skin and soft tissues and the function of the arteries and veins. In addition, blood samples provide information about the function of your heart, kidneys, liver, and thyroid gland. A hemogram (blood count) is used to check your glucose and protein levels, among others.
This is especially important to rule out any other reasons for your disease. Symmetrical swelling of your limbs may be due to other reasons like lymphedema, obesity, heart failure, kidney or liver dysfunction, drugs, venous diseases, or gravitational edema.
How is lipedema diagnosed?
Your medical history and the physical exam of your body are the main elements in the diagnosis of lipedema. Here are some typical questions that your HCP will ask you:
- When did you first notice any signs or symptoms?
- Did your signs and symptoms become worse over time?
- How do your signs and symptoms affect your daily life (work, leisure activities, personal relationships) on a physical and/or psychological level?
- Do you take any medications at the moment, and if so, what kind of medication do you take?
- Is there someone in your family with the same signs and symptoms?
Your HCP will examine your affected limbs as well. This usually includes the following steps:
- Check-up of your affected limbs: what parts of the body are affected, and are your limbs affected symmetrically?
- Palpation of your tissue: are there differences in the texture, temperature, and sensation?
- Assessment of your weight (Body Mass Index) and, more important, disproportions between your waist and height (waist-to-height ratio).
- Mobility and range of motion: does the tissue enlargement affect your gait, and do you have pain in the knees or hips?
- Measurements of your blood vessels (veins and arteries) to check your blood circulation.
- Assessment of your skin to rule out any infections
Your medical history and the examination of your affected limbs are often enough for the diagnosis of lipedema. Your HCP may need further information, for example, when you have other diseases that can cause your symptoms. There are a few diagnostic tools that can help to distinguish between lymphedema and lipedema, to rule out any diseases of your venous system, or to decide whether the diseases occur together:
- Ultrasound scan – uses high-frequency waves that create a picture of your tissue from the outside
- Lymphography – uses a radiocontrast agent that visualizes your lymphatic system under X-ray
- Lymphoscintigraphy – uses a nuclear medicine that visualizes the lymph drainage and your lymph nodes
- Venous duplex ultrasound – a specific ultrasound method to assess the functions of your veins.
An early diagnosis and treatment of lipedema can prevent the progression of your lipedema. Be aware of your body and stay in contact with your HCP when you notice any changes or new signs and symptoms.
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