International Healthcare Professionals’ Perspective on Lipedema/Lipoedema Survey
Lipedema is a disease where loose connective (fat) tissue develops primarily on the limbs of patients with lipoedema. LIO Lipedema Italia, Lipoedema UK and AndLINFA together with other international organisations have put together a survey to better understand the opinions of providers around the world on certain facets of lipedema.
Our plan is to collate the data we collect from this survey and provide it in published form for everyone to read.
As part of the survey, you will be asked several questions. Once you have answered an individual question you will also be asked to rate your answer.
RATE your recommendations using the GRADE system:
Strong Recommendation (Grade 1)
Weak Recommendation (Grade 2)
Rate the quality of evidence.
High (Grade A)
Moderate (Grade B)
Low (Grade C)
You can find out more about rating at Uptodate
The papers below will be helpful to answer questions in the questionnaire.
The Bertsch and Erbacher 2020 JWC article1 states there is no edema in lipedema tissue.
This means that patients with lipedema should not be offered manual lymphatic drainage (MLD) or sequential pneumatic compression pump therapy, and that compression garments are useful for pain only.
Many other papers state there is edema in lipedema tissue (see papers attached below).
You can download a paper that supports edema in lipedema tissue here.
Here is a paper showing extracellular water is higher in patients with lipedema compared to patients without lipedema- Crescenzi et al 2019- Bioimpedance LRB
Water is present in loose connective tissue bound to glycosaminoglycans (GAGs; complex branched sugar molecules) along with sodium, as well as free flowing with proteins (albumin), electrolytes and other constituents of intercellular (between cells) fluid. That water is present in tissue bound + free has been known for almost 50 years (Guyton, 1965).4 When lymphedema initially begins, GAGs increase to help bind up the extra fluid.
Glycosaminoglycans when bound to a protein backbone are called proteoglycans.
Attached please find a paper demonstrating an increase in proteoglycans in people with excess fat tissue.
This paper that shows transport of lymphatic fluid in people with lipedema is slowed/abnormal even in early stages of lipedema.
Here is a second paper showing transport abnormalities of lymph fluid in the lymphatic system in people with lipedema.
- MENTAL HEALTH AND PAIN
An article by Joanna Dudek et al.9 states lipedema tissue and pain develop before mental health issues. In other words, the inability to lose lipedema fat by diet and exercise, pain, and lower quality of life can lead to depression and anxiety in people with lipedema.
A number of papers have shown that not all women with lipedema have pain10 11 including the landmark paper in 1951 by Wold, Allen and Hines where they found only 40-50% of women had pain or tenderness in the tissue.12
Some publications state that, by definition, dieting and weight loss do not affect lipedema tissue. This is demonstrated in a recent study on the Mediterranean diet where women with lipedema lost as much weight as control women but there was no change in the percent fat on the body. Use this paper on a modified Mediterranean diet for women with and without lipedema to answer the question “Can lipedema tissue be lost by diet?”13
- BARIATRIC SURGERY
Use this paper to see an example of a picture of a woman with lipedema after bariatric surgery: Differential diagnoses and treatment of lipedema has bariatric surgery.
Please also review these papers:
Lipedema in patients after bariatric surgery 2016
Lipoedema in patients after bariatric surgery report of two cases and review of literature
Mobility Problems and Weight Regain by Misdiagnosed Lipoedema After Bariatric Surgery.
- LIPOSUCTION FOR LIPEDEMA
Baumgartner and coworkers reported 4-, 8- and 12-year follow-up on 71 lipedema patients treated with liposuction using tumescent local anesthesia.15 Compared with earlier results, improvement persisted in the measures of spontaneous pain, sensitivity to pressure, edema, bruising, restriction of movement, self-assessment of appearance, quality of life and overall impairment.
While in the period from 4 to 8 years postoperatively complaints slightly increased, this was not the case for the period 8 to 12 years postoperatively.
In addition a similar reduction of conservative treatment (decongestive therapy, compression garments) was observed at 12 years post-operatively compared to after 4 and 8 years.
Compared with the body weight before liposuction, 55% of the patients showed a reduction of 6.2 kg on average and43.3% had a weight increase with an average of 7.9 kg.
The Bertsch and Erbacher 2020 JWC article1 states that liposuction will “in no way result in a substantial, permanentor even only approximately satisfactory weight loss.”
Other studies have followed patients with lipedema for 12 years after liposuction demonstrating an obvious reduction of circumferences in hips and extremities with a distinct improvement of body size, a minor reduction of weight and the disappearance of disproportionality between the upper and lower parts of the body.
Use these data to answer the question: “Do you think liposuction results in loss of fat tissue with a reduction of weight?”
We thank you in advance for your participation in this important project and would appreciate your help in encouraging other healthcare practitioners involved with lipedema patients to also participate.
Please complete your response before 31st October 2021.
To access the survey please click on the following link:
- Bertsch T, Erbacher G. Lipoedema: a paradigm shift and consensus. Journal of Wound Care 2020;29:2-52.
- Cellina M, Gibelli D, Soresina M, et al. Non-contrast MR Lymphography of lipedema of the lower extremities. Magn Reson Imaging 2020;71:115-24. [published Online First: 2020/06/21 06:00]
- Crescenzi R, Donahue PMC, Weakley S, et al. Lipedema and Dercum’s Disease: A New Application of Bioimpedance. Lymphat Res Biol 2019;13(10)
- Guyton AC. Pressure-volume relationships in the interstitial spaces. Invest Ophthalmol 1965;4(6):1075-84.
- Herbst KL, Kahn LA, Iker E, et al. Standard of care for lipedema in the United States. Phlebology2021;28(2683555211015887):2683555211015887. [published Online First: 2021/05/30 06:00]
- Pessentheiner AR, Ducasa GM, Gordts PLSM. Proteoglycans in Obesity-Associated Metabolic Dysfunction and Meta-Inflammation. Frontiers in Immunology 2020;11(769) doi: 10.3389/fimmu.2020.00769
- Gould DJ, El-Sabawi B, Goel P, et al. Uncovering Lymphatic Transport Abnormalities in Patients with Primary Lipedema. J Reconstr Microsurg 2019;23(10):0039-1697904.
- Forner-Cordero I, Olivan-Sasot P, Ruiz-Llorca C, et al. Lymphoscintigraphic findings in patients with lipedema. Rev Esp Med Nucl Imagen Mol 2018;37(6):341-48. doi: 10.1016/j.remn.2018.06.008. Epub 18 Aug 28.
- Dudek JA-O, Białaszek W, Gabriel M. Quality of life, its factors, and sociodemographic characteristics of Polish women with lipedema. 2021(1472-6874 (Electronic))
- Herbst KL, Hansen EA, Cobos Salinas LM, et al. Survey Outcomes of Lipedema Reduction Surgery in the United States. PRS Global Open 2021;9:e3553 doi: 10.1097/GOX.0000000000003553
- Gensior MHL, Cornely M. Der Lipödemschmerz, seine Folgen auf die Lebensqualität betroffener Patientinnen – Ergebnisse einer Patientenbefragung mittels Schmerzfragebogen [Pain in lipoedema, fat in lipoedema and its consequences: results of a patient survey based on a pain questionnaire]. Handchir Mikrochir Plast Chir2019;51:249–54.
- Wold LE, Hines EA, Jr., Allen EV. Lipedema of the legs; a syndrome characterized by fat legs and edema. Ann Intern Med 1951;34(5):1243-50.
- Di Renzo L, Cinelli G, Romano L, et al. Potential Effects of a Modified Mediterranean Diet on Body Composition in Lipoedema. Nutrients 2021;13(2) [published Online First: 2021/01/29 06:00]
- Wiedner M, Aghajanzadeh D, Richter DF. Differential diagnoses and treatment of lipedema. Plastic and Aesthetic Research 2020;7:1-10. doi: 10.20517/2347-9264.2019.51
- Baumgartner A, Hueppe M, Meier-Vollrath I, et al. Improvements in patients with lipedema 4, 8 and 12 years after liposuction. Phlebology 2020;26(268355520949775):0268355520949775.