Lipedema Awareness Month

By June 2, 2022 No Comments

Understanding Lipedema in a Social Context

June is LIPEDEMA AWARENESS MONTH. It’s a time when we join together to learn, connect, and discuss our experiences, our questions, our answers, and socialize with like-minded ladies. Since lipedema impacts our lives, especially in a social context as reviewed in this article, we engage in activities that can bring us together – social connection. For more info – Lipedema Awareness Month Summer Bootcamp June 2022

For today’s blog post I would like to tell you about a paper called Lipoedema as a Social Problem. A Scoping Review. It’s a study by researchers in Poland, and it was published in the peer-reviewed journal called International Journal of Environmental Research and Public Health in November 2021. 


The aim of this review was to present the current knowledge about lipedema in a social context. The researchers asked the following questions:

  1. Is lipedema related to one’s lifestyle?
  2. Does the presence of lipedema increase the risk of other diseases?
  3. To what extent does lipedema affect one’s quality of life? 


The researchers sought answers to their questions through a search of medical literature databases between the years 2018 to 2021. The keywords for this search included: lipedema (spelled both with an o and without), quality of life, chronic disease, obesity, pain, body composition, and disease of the cardiovascular system. 

Out of the 119 articles found, ten articles dealing with the issue of lipedema in a social context were selected. 

The criteria for article selection was as follows:

  1. Must be a study using women with a diagnosis of lipedema.
  2. Quantitative clinical studies, case reports, clinical observations, or qualitative studies were all considered.
  3. Papers about lipedema that included data on the social context and with reference to the quality of life, comorbidities, and a connection with body weight and/or with the mental state were all considered.
  4. Only publications in English were considered.


Now let’s take a look at their findings. Here are the key results of this review:

There is a relationship between lipedema and body weight. In the four studies reviewed that had BMI data, all found that the greatest portion of participants was classified as obese by their BMI. The percentage of participants in this category ranged from 50% to almost 87%. The results of one case study of a woman with normal body weight were presented as representative of the least frequent relationship between weight and lipedema. This patient had used severe calorie restriction and intense exercise in an effort to lose body fat on her lower body. She was completely unsuccessful and consequently developed anorexia.

Common comorbidities associated with lipedema. Four papers collected data on comorbidities by asking the participants what other conditions they had. The most common other diagnoses that women with lipedema list include allergies, obesity, sleep disorders, hypothyroidism, depression, hypertension, and migraine. Less frequent diagnoses mentioned included asthma, skin disorders, bowel disorders, rheumatic diseases, dyslipidemia, diabetes, polycystic ovary syndrome, lymphedema, venous insufficiency, and fibromyalgia. Interestingly, 25% of the women reported that they had no other comorbidities.

Lipedema is associated with a lower quality of life. Three of the papers reviewed used a survey to assess the quality of life of women with lipedema. These studies showed a marked relationship between the severity of symptoms, the presence of pain, and associated mobility restrictions to have the most negative impact on quality of life. Other significant impacts on quality of life included having a larger number of comorbidities, depression, low self-esteem, and a lack of understanding by their medical providers.

Psychological stress may increase pain perception. This conclusion was based on a single pilot study conducted by Erbacher and Bertsch and published in 2020. They defined “psychological stress” as either having a mental illness diagnosis or having symptoms that suggest a mental illness. Mental illness diagnoses occurred in 51% of their participants and were more common in those with a higher BMI. The Erbacher and Bertsch article also reported on an association between the presence of psychological stress and the level of pain, in which those participants with psychological stress rated their pain as less than one point higher on a scale of 1 to 10 than those without psychological stress. This is not a very significant result in my opinion. 


It’s interesting to see that there is research focused on understanding lipedema in a social context. This paper exemplified for me the need for more research about the social impact of lipedema on women living with this diagnosis. Although the data presented in this paper is limited, it gives us a place to start and now we know where we need to go. At the Lipedema Project, we hope to contribute to the body of knowledge in this area ourselves.

Join our Lipedema Awareness Month FREE Summer Bootcamp HERE.