By Guy Eakin, PhD
One of the confounding issues of Lipedema is that its features present inconsistently across patients, complicating researchers’ ability to develop standard ways of classifying that feature. Texture is a prominent example. Many women with Lipedema can feel nodules and other texture changes under their skin and may even see changes in the surface appearance of their limbs. This texture can feel different between affected regions of the same patient and may also change over time.
Clinically, guidelines differ with respect to whether texture is considered in a Lipedema diagnosis [1]. Some resources, like Spanish guidelines, express concern that Lipedema texture can be confused with that of cellulite, so reliance on texture for diagnosis is not recommended by those authors [2]. Guidelines that do include texture tend to use language derived from a handful of reports in the medical literature. While this language can provide striking imagery, we know that every woman with Lipedema is different and these terms may not fully describe the variety of textures found in Lipedema.
Where do these terms come from? The earliest descriptions of Lipedema in the 1940s actually don’t say much about the texture of the tissue. Skin texture descriptions only began appearing in Lipedema literature two decades later, when, by 1966, case reports started detailing the skin of patients as having a specific appearance.
“On close inspection, macules of fat could be seen through the skin giving it
an ‘pseudo-peau d’orange’ appearance” [3].
Descriptions of texture started to gain prominence in clinical reports in the early 2000s. Different reports began using new texture descriptors, as well as a staging system that made reference to textural issues [4]. Stage I was described as feeling like “styrofoam balls in a plastic bag” to differentiate from stage II, which was described as “walnut to apple-like indurations, and overlying skin has an irregular appearance akin to a ‘mattress’” cited in [5,6].
Photos, from left: Unlike obesity fat, Lipedema fat is not smooth but instead feels like beanie babies, rice, pea- or walnut-sized nodules; fat nodules extracted by Dr. Anne Dancey (UK); Lipedema fat removed via liposuction by Dr. Jason Emer (CA, USA).
Texture descriptions vary by patient
But how do patients themselves describe texture? When we blogged about pain in December 2020, we wrote about a German paper that cataloged 22 adjectives that German Lipedema patients used to describe their pain [7]. The results opened our eyes to variability between patients and suggest that language might inadvertently limit how we study the range of experiences in Lipedema patients.
We wanted to know what would happen if we adapted that question to texture for participants in the Lipedema Foundation Registry. When participants enroll, they are asked to think about textural issues like rigidity and frailty, in addition to the overall size of nodules. We also ask registrants to consider differences between the surface features that contribute to texture and the nodular features that lie beneath the skin in the subcutaneous fat.
Many Registry participants noted that they had Lipedema-like texture throughout their body, with varying frequency. Though mostly in the upper leg and arm, Lipedema-like texture occurs elsewhere less commonly (see chart below).
Though it’s not a research study, we also asked patients on Facebook and Instagram to describe their tissue texture. A small number of responses indicated that patients use a richer language than researchers to describe Lipedema. We see comparisons to “silly putty,” “a sack of rice with some golf balls mysteriously thrown in,” and even “bubble wrap,” as well as descriptions like “tender sacks of rice,” a “cobbled” appearance, and “some places soft, and other’s bumpy and bean-bag like.” One woman described her body saying, “mine feels like a water balloon with lumps underneath it.”
Imaging technology unable to capture texture
One puzzling issue in Lipedema that is frequently mentioned is the inability of imaging technology to adequately capture something that is so readily apparent to physicians and patients alike. If we can feel the texture of Lipedema fat through the skin, why do we hear that it is so difficult to image reliably using ultrasound or other techniques that are common to medical imaging?
The answer may be one part technical and one part business decision. According to Dr. Manus Donahue, Professor and Assistant Vice Chair of Research, Neurology, Vanderbilt University Medical Center, it’s true that we can visualize fluid and fat accumulation quickly with imaging; however, fluid and fat are not specific only to Lipedema. The critical need in Lipedema is to grow functional imaging abilities to allow for the underlying changes that contribute to this fluid and fat deposition to be understood and to use this information to improve diagnostic procedures and guide the development of disease-modifying rather than simply symptomatic therapies.
Unfortunately, the other part of the equation, the business decision, includes the fact that MRI imaging is expensive, and without appropriate recognition of Lipedema as a distinct clinical condition by insurers, many imaging strategies are available only to patients involved in a limited number of clinical research studies.
For researchers working outside the clinic who may not see Lipedema patients, we hope this gives some extra context to the papers you read. For everyone thinking of new ways to document and understand Lipedema, we hope that these women’s words give us new ways to look at individual differences that might help uncover truths about the condition they share.
Perhaps there are some things that we can do while we wait for technology to progress. We encourage you to keep the conversation going. Whether you’re a patient, clinician, researcher, or friend of someone with Lipedema, please join us on social media and share your experiences. We want to hear about your descriptions of both texture and pain, various treatments that have or have not helped you, and the support systems you’ve found. Your input only helps inform broader conversations in pursuit of diagnostic tools and better treatments.
1 Lipedema Diagnosis Comparison Chart: A Summary of Commonly Used Guidelines (2022)
2 ALCOLEA, J. et al. Documento de Consenso Lipedema: Consensus document on Lipedema. (2018), Litogama. SL
5 Lipödem und Cellulitis: sowie andere Erkrankungen des Fettgewebes (2001)
6 Klose, G. and Strößenreuther, R.H.K. (2007) Understanding Lipedema. Lymph 19, 1–6