Stages of lipedema
You may have recently been diagnosed with lipedema, or you may suspect that you have lipedema. Perhaps you have a relative or friend who has been diagnosed with lipedema and would like to learn more about this condition in order to provide helpful support.
Lipedema is a painful increase in subcutaneous fatty tissue that always occurs symmetrically on the legs and occasionally on the arms. This can—but does not necessarily—lead to changes in body shape. Often, the upper body remains slim while the lower body widens. The hands and feet are always unaffected by these changes. The causes of lipedema remain unclear.
Different stages and types of lipedema
In 2015, the first official guideline on lipedema was published in Germany, classifying lipedema into three different stages, which is still used today by the general public and the media.
However, it should be noted that this staging system is increasingly viewed critically by experts. This is because it is based exclusively on external appearance, particularly skin changes. It completely disregards pain, which is an obligatory component of lipedema in its various forms.
For example, a patient in stage I with almost no externally visible changes may experience severe pain and suffer greatly, urgently seeking treatment. In contrast, there are patients with advanced stage III disease with overhanging fat flaps but only minor symptoms. This constellation tends to favor a conservative treatment approach. To complicate matters, the transitions between the individual stages can be fluid and subjective.
A new version of the lipedema guideline is currently being drafted in Germany and is likely to be published this year (2024).
The following stages of lipedema are distinguished based on external appearance:
Stage I:
Smooth skin surface without irregularities.
Stage II:
Uneven, predominantly wavy skin surface (similar to cellulite).
Stage III:
Pronounced increase in circumference with overhanging fatty tissue (so-called dewlap formation).
In addition, there are four different types of lipedema, depending on the location of the affected increased and painful fatty tissue:
Type I:
The increased fatty tissue is only found on the buttocks (so-called "saddlebags").
Type II:
The increased fatty tissue affects the entire thigh up to the knee joints.
Type III:
The entire leg, from the hip to the ankles, has increased fatty tissue.
Type IV:
The arms—especially the upper arms—have increased fatty tissue.
Unlike the classification into stages, this classification into types plays a rather minor role in everyday life and is used more for planning surgical procedures.
As already noted, the staging system refers only to the external appearance and completely disregards the severity of symptoms. However, the severity of symptoms is of central importance for making a sensible treatment decision: severe pain despite minor external changes in stage I or II tends to favor surgery. Minimal pain with extensive fatty tissue (stage III) tends to favor a conservative approach.
Ultimately, however, it is always the patient who decides which path to take. However, in order to make a good decision, it is essential to be sufficiently informed about the advantages and disadvantages of the alternatives.
Is lipedema always progressive?
To date, there is no scientific evidence that lipedema is always progressive. It may progress to a more advanced stage, but this is not necessarily the case.
There are many patients who remain at a certain stage throughout their lives without any deterioration. It is particularly important to me to emphasize this aspect, because in my practice I see many patients who are very afraid of continuously gaining fat tissue and feeling helpless in the face of this weight gain. They are afraid that one day they will have a misshapen body and be unable to do anything about it.
However, fatty tissue can never multiply on its own! There is a reason why the body builds up fatty tissue. This reason is not the presence of lipedema per se, but always a positive energy balance.
In most cases, we consume more energy (calories) than we burn, or there is a metabolic disorder such as an underactive thyroid gland. Almost 40% of all lipedema patients have an underactive thyroid gland (known as hypothyroidism, e.g. as part of Hashimoto's thyroiditis).
Our bodies always store excess energy in the form of fat tissue. So if your body builds up more fat tissue, it can only do so if your daily energy balance between energy intake (food—including drinks!) and energy expenditure (physical activity) is not in equilibrium and shows a surplus. Then we gain weight—whether we have lipedema or not.
There is simply no such thing as "self-growing" fatty tissue—as it is often described on social media—not even in lipedema. According to the law of conservation of energy in physics, the sum of all energy always remains the same.
This means that one form of energy (fat tissue) can only be produced by destroying another (e.g., food). New energy—i.e., fat tissue—cannot be created on its own. Once you have understood this fact, you will realize that you can always control the increase or decrease of your fat tissue yourself, even with lipedema!
However, what you cannot control are the places where your body stores fat tissue, as this depends on the individual distribution of your fat receptors. These are genetically determined and also gender-specific.
Women often tend to store excess fat tissue on their hips and thighs, known as "breastfeeding fat." The female body builds up energy reserves in these areas for periods of increased energy demand (e.g., breastfeeding babies).
Lipedema is only diagnosed when symptoms—primarily in the form of pain—are also present in this increased fatty tissue. Without symptoms, this increased fatty tissue is simply referred to as "lipohypertrophy" and is not considered a disease.
Why is early detection of lipedema important?
Many women have spent years going from doctor to doctor without getting the right diagnosis.
However, lipedema-related pain can be treated effectively, which is why early detection is important.
In addition, dietary changes and increased physical activity can prevent lipedema from progressing to a more advanced stage.
Symptom relief can be achieved by initiating compression therapy with appropriate compression garments and additional manual lymphatic drainage to relieve pain (not to drain fluid, which does not occur in lipedema).
Early detection prevents secondary diseases. In stage III lipedema in particular, the massive increase in subcutaneous fatty tissue can cause orthopedic problems such as back, hip, and knee joint pain with increasing bowlegs in the knee joints.
Skin problems caused by rubbing of the thighs in the crotch area and dermatoses (e.g., fungal infections) in deep skin folds can occur in stage III. Therefore, good skin care and, if necessary, dermatological treatment are essential, especially in stage III.
Management and treatment of lipedema:
The diagnosis of "lipedema" brings long-awaited relief to many women, as they now have an explanation for their symptoms. However, it also leaves them feeling uncertain about the road ahead.
Surgery is not always the final step in conservative treatment. Early liposuction appropriate to the stage of the disease can offer many patients a quick way to relieve their symptoms.
However, lipedema is incurable, and compression garments may still need to be worn during the day even after surgery.
Paying attention to proper nutrition and sufficient exercise is also essential after liposuction, as otherwise new fat deposits may appear in other areas. These are then often interpreted by patients as a recurrence of lipedema. However, the new fat deposits are only the result of a continuing energy surplus for the body. Our body always converts excess energy into fatty tissue.
In my private practice, I will examine you for lipedema and advise you on how to proceed based on the findings. If necessary, I will initiate conservative therapy or perform stage-appropriate surgery (liposuction) on an outpatient basis.
Living with lipedema - tips and advice
After diagnosis, start wearing compression garments during the day (flat knit, compression class II) and continue to do so if this alleviates your symptoms. Visit a good medical supply store, where you will not only find correctly fitted compression garments, but also lots of tips and tricks for using the corset.
Regular manual lymphatic drainage can help alleviate your symptoms, even though lipedema does not involve excess fluid in the soft tissue that needs to be removed. Of course, excess fatty tissue cannot be massaged away. However, the gentle stroking movements seem to have a soothing effect.
IPK therapy and nutritional assessment
To support this, you can perform intermittent pneumatic compression therapy (IPC) at home, in which machine-inflated air cuffs exert gentle pressure on the affected fatty tissue of the extremities, which also has a pain-relieving effect.
Take a close look at your eating habits, ideally with the help of a nutritionist, as everyone's metabolism is different. There is no such thing as "the" right diet. This also includes beverages, and you should avoid diet or zero-calorie drinks, as they have also been shown to lead to weight gain: the sweet stimulus in the brain triggers increased insulin secretion via hormonal circuits, resulting in the storage of fat tissue. Insulin is the fattening hormone and promotes the build-up of fat tissue in our bodies.
Holistic strategies for exercise, treatment, and self-acceptance
Make sure you get enough exercise in your daily routine and start by building muscle, as increased muscle mass in itself means a higher daily basal metabolic rate. You don't need to go to the gym to do this; there are wonderful exercises you can do using your own body weight, either at home or outdoors.
If all conservative measures fail to relieve the symptoms, surgery (liposuction) remains as a further option. It offers the prospect of lifelong relief from symptoms, but does not guarantee it.
Last but not least, you should treat yourself with understanding and affection. Those around you will not perceive you in terms of your lipedema, but as the person you are. If necessary, seek professional help in this area as well; it can change your attitude toward lipedema.
Conclusion:
- The current staging of lipedema is often unhelpful, as it only reflects the external appearance—especially of the skin—and not the symptoms and psychological distress experienced by affected patients.
- It is possible for lipedema to progress to more advanced stages, but this is not inevitable. It is possible for the condition to remain stable at one stage or even regress to a less advanced stage.
- Help is available at every stage of lipedema, but it always involves changing your lifestyle habits (exercise, diet).
- Early detection of lipedema is important in order to spare patients a long period of suffering and pain and to prevent the condition from progressing to a more advanced stage.
- Vascular specialists (phlebologists, vascular surgeons, angiologists) and lymphologists are the first point of contact after the family doctor for the diagnosis and treatment of lipedema.
Frequently Asked Questions
There are three different stages of lipedema, which mainly focus on the external appearance and texture of the skin.
They do not provide any information about the degree of pain sensation and are therefore of limited value or of little help in deciding on a course of treatment.
This can best be identified through self-inspection, but the transitions between the individual stages are often fluid and subjective.
The treatment methods in the different stages do not differ fundamentally from one another.
Conservative and surgical treatment are both options at every stage.
The decision on the course of treatment to be taken is ultimately always made by the patient.
Lipedema is not necessarily progressive, meaning that a certain stage can remain permanent. However, there is currently no cure for lipedema.
However, through the loss of fatty tissue (regression or surgical removal), a certain stage can be reduced to a lower stage, up to and including freedom from symptoms.
Above all, make sure you get enough exercise and pay attention to your eating habits.
Wearing compression garments reduces discomfort, but can also be annoying on some days.
Develop a positive outlook on the disease.
We will diagnose you if lipedema is suspected and initiate appropriate treatment.
If you decide to undergo surgery, we will perform stage-appropriate liposuction on an outpatient basis.
We accompany you through every stage of your treatment and are your point of contact for all questions relating to lipedema.
Further information on lipedema
What is lipedema?
symptoms
Treatment
Impressions from practice
