Our research paper today was a collaboration between researchers in Australia and the Netherlands. It’s titled: Stages of lipoedema: Experiences of physical and mental health and health care. It was published in Quality of Life Research in August 2022.
This study aims to learn about and describe the experiences of physical and mental health and health care across stages of lipedema.
Who were the participants of the study?
1,362 participants who self-identified as having lipedema were included in the study. The average age of survey respondents was 41-50 years and the majority were either in the US or Netherlands.
423 of the participants were in stage 1 or 2 lipedema, 474 were in stage 3 or 4, and 406 did not know what stage of lipedema they were in. Those in stages 1- 2 were significantly younger than those in stages 3-4 and they were able to get diagnosed much sooner, with an average wait of 11-14 years, while the stage 3-4 participants typically took 20-25 years to receive a diagnosis. Additionally, the stage 3-4 participants were more likely to have a comorbidity of obesity and lymphedema.
What were the methods used?
The researchers used an anonymous self-report survey conducted in 2014-2015 and it was offered in Dutch and English. The survey questions included demographic information, comorbidities, lipedema symptoms, management strategies utilized, and motivation for liposuction (if this intervention was used). Also investigated were participant experiences in the workplace and with their healthcare providers, the psychological impact of lipedema, and any psychological support that they may have sought.
What were the results of the study?
Pain and fatigue were reported quite frequently in all stages, which may indicate that these symptoms may be independent of the severity of the condition. Even with the similar frequency of these two symptoms across groups, the stage 3-4 group was still more impacted, however. For instance, 89.7% of stage 3-4 participants reported pain, while 85.1% of stage 1-2 participants and 80% of stage unknown participants did so.
This seemed to be a recurring theme in this paper – aside from pain and fatigue, the negative impacts of lipedema were far, and above greater for the stage 3-4 participants. Here are some examples:
52.5% of stage 3-4 participants reported reduced mobility while only 18% of stage 1-2 participants did so. Less than two-thirds of participants were employed, and of those, the stage 3-4 participants reported work/employment issues significantly more frequently. For instance, 61.2% of stage 3-4 participants reported difficulties at work due to lipedema, while 41.6% of stage 1-2 participants had work issues. Stage 3-4 participants were more likely to be treated badly and experience weight bias from their healthcare providers as well as more likely to be diagnosed with depression and eating disorders than those in stages 1-2. Stage 3-4 participants experienced greater psychological distress, social impairment, and isolation than the other two groups as well.
Another concerning result of this study was that although many of the participants suffered from psychological distress associated with their lipedema, only 22% sought help from a professional. A majority of participants reported that their healthcare provider was dismissive and inclined to believe their symptoms were due to obesity. This was certainly evident in the long wait for a diagnosis of up to 25 years in some cases.
The motivation for seeking treatment for lipedema, including liposuction, was different depending on the stage. Participants in stages 1-2 were more likely to use exercise to treat lipedema than stage 3-4 participants, while those in stages 3-4 were more likely to use conservative therapy.
The most common intervention for all 3 groups was healthy eating at 68.7%, while psychological help, as noted before, was the least utilized option, at only 9.8%.
Of note, the participants seem to not equate “healthy eating” with “diet.” For instance, 76.1% of stage 1-2 participants state that they use healthy eating, but only 28.8% use diet to manage lipedema symptoms. The results were similar in the other two groups, with the respondents stating they use healthy eating overwhelmingly more frequently than a diet. This leads me to speculate that people in general view “diet” as a short-term and not necessarily healthy intervention used primarily for weight loss, while “healthy eating” is seen as a superior way to eat but likely won’t result in significant weight loss. That is unfortunate and may be why a ketogenic diet is viewed with suspicion because it’s known to be very effective for reducing weight, and therefore must not be healthy.
While only 13.3% of the participants had already had liposuction, over 80% expressed a wish to have the surgery or were at least considering it as a treatment possibility. Stage 1-2 participants were more likely to seek liposuction in order “to be thinner” than those in stage 3-4 (40.9% vs 29.5%). Stage 3-4 participants were more likely to be motivated by improving mobility than participants in stages 1-2 (70.7% vs. 41.8%). The single greatest reason for liposuction in all groups, however, was to reduce the pain associated with lipedema, with stage 1-2 at 72.1%, stage 3-4 at 77.2%, and the unknown stage group at 66.5%.
This study added some unique insight into what it is like to live with lipedema at various stages of the disease. It has helped us understand the condition better and shows the necessity of raising awareness about lipedema. This may help lessen the negative impacts by improving access to treatment.
Some of the limitations of this study were that women from the US and Netherlands dominated the study. It may be due to a lack of awareness, but certainly, other countries were under-represented. Also, the data collected relied upon self-report and recall and may not be a reliable source of information.
For more updates on the latest research regarding lipedema, check out Lipedema Simplified’s Flash Briefings. It’s our daily mini-podcast where we share tips, tools, and research pertaining to Lipedema.