Lipedema is a chronic, progressive disease which occurs almost exclusively in women; as of this date, there have been a few known cases diagnosed in men. Despite an uptick in recent research, there is still much to be learned about the disease, and there is no cure. Treatment focuses on attempting to suppress further development and removal of the diseased tissue through liposuction.
Although first described in research from 1940 by Drs. Allen and Hines of the Mayo Clinic, many physicians remain unaware of lipedema or its symptoms. Lipedema is known by many names: lipoedema, lipoedem, and lipodem in other countries, “lipalgia syndrome” or “painful fat syndrome,” “lipohypertrophy dolorosa” or “adiposis dolorosa” which highlight the painful abnormal fat accumulation in the legs, and “lipo-lymphedema,” which is the term used when lipedema progresses and affects the lymphatic system.
Lipedema is a chronic, progressive disease that causes a disproportionate amount of swollen lipomas and affects the legs and/or arms bilaterally. Patients with lipedema find that the legs swell and ache upon standing/walking for long periods of time. The lipomas are hardly affected by either diet or exercise and can only be removed by special lymph-sparing surgery, which is not routinely covered by insurance, nor does most insurance cover the compression garments which are critical to postoperative care and life-long treatment of lipedema. Insurance carriers as well do not cover the many supplements needed to try to control advancement of the disease.
Lipedema presents as symmetrical accumulation of deposits of painful fat in subcutaneous tissue that disproportionately affects the lower limbs, anywhere from buttocks to ankles, although there are several places where it develops, and these are termed the “types” of lipedema (see below). The condition is associated with easy bruising due to fragile blood vessels, and the legs are usually very sensitive and painful to touch, as the capillaries “leak.” In about a third of women, the arms can also accumulate distinct patterns of fatty tissue. A genetic component to the disease is suspected, and development can occur at times of hormone changes in women: puberty, hysterectomy, menopause.
Until a few years ago, there was no research being done of lipedema, and 80 years later, many physicians still do not recognized it and generally misdiagnose it as simple obesity or even lymphedema. It is only in the recent two decades or so that interest and education about lipedema has been gaining awareness, even though it is estimated that 11% of women — 1 in 9 — have the disease. According to the American Cancer Society, the average risk of a woman in the United States developing breast cancer sometime in her life is about 13% — 1 in 8, and yet, despite being almost as prevalent as breast cancer, lipedema remains relatively ignored by our medical system and the insurance industry.
The lack of awareness of lipoedema among healthcare providers was reflected in low scores on the The Swedish National Patient Survey dimension of knowledge and information. The women described this as the main reason for not receiving a diagnosis or adequate information on their health condition. The qualitative data generated a theme — the impact of lack of knowledge in care — pointing out the women’s experiences with healthcare providers failing to explain women’s health problems. It has been previously known that medically unexplained symptoms may strain the relationship between the patient and provider, contributing to mutual feelings of being stuck, lack of trust, and a sense of helplessness.
From the 2025 research paper Dealing with lipoedema: Women’s experiences of healthcare, self-care, and treatments — a mixed-methods study.
As lipedema worsens, the affected limbs feel heavy and can be painful. Because of the lack of awareness, many women remain undiagnosed, receiving no treatment until they have progressed to advanced stages, when mobility is affected due to the location and weight of the lipomas, both of which create joint deformities in the lower limbs and an abnormal gait over time — see Lipedema’s Effects on Gait.
Stages of Lipedema
Lipedema is categorized in stages by levels of development. These classifications include skin surface and the amount of loose connective tissue present. Lipedema tissue (and therefore body mass index), lymphedema, metabolic disease and lymphedema increase with stage.
Stage I — Skin surface is normal. Subdermal nodules due to underlying loose connective tissue fibrosis are present.
Stage II — Skin surface is uneven, and dimpling is present due to progressed fibrotic changes and excess tissue. Palpable nodules may be more numerous and larger. In arms, tissue begins to hang off the arm, those patients with full arm involvement show a more pronounced wrist cuff.
Stage III — There is lobular deformation of skin. There are numerous large subdermal nodules and deformities of overhanging lobules of increased lipedema tissue which is more fibrotic in texture.
Progression of Lipedema
Below, my legs at age 23, stage 1. My lipedema symptoms began at age 7, following tonsillectomy/adenoidectomy, with saddlebag development. Increasing sensitivity and pain to touch developed throughout my calves, knees and thighs after menarche.
Below, my legs at age 55, stage 3. I had consulted numerous medical practitioners (MD, DO) prior to this over the decades, in my 30’s, 40’s and 50’s, but due to lack of awareness of lipedema, none of them were able to recognize lipedema, and I was dismissed as having obesity. I was unaware of the disease process of lipedema as well and had already advanced to stage 3 from a lack of treatment, and my joints were already very worn, way beyond what was common for my age. It was at this point through a search on the internet that I did find photos of other patients with legs like mine. I was able to locate a practitioner familiar with lipedema, who verified a diagnosis.
Below, my legs at age 57, stage 3, after my first surgery. Marked bruising and swelling were still present four days following liposuction surgery for removal of lipedema tissue on front surface of both thighs.
To learn more about stages of lipedema, see Staging by the Lipedema Foundation or Stages and Types of Lipedema by Dr. Thomas Wright.
Types of Lipedema
Lipedema is also categorized by the distribution of subcutaneous adipose tissue, which is termed the Schingale classification.
Type I — Lipedema tissue is present under the umbilicus and over hips and buttocks
Type II — Lipedema tissue is present under the umbilicus to the knees (saddle bag or jodhpur phenomenon)
Type III — Lipedema tissues is present under the umbilicus to the ankles
Type IV — Lipedema tissue is present in the arms
Type V — Lipedema tissue is present in the calves
To learn more about types of lipedema, see Stages and Types of Lipedema by Dr. Thomas Wright.
Treatment of Lipedema
A multi-pronged approach is needed for women with lipedema. Standard treatment recommendations for lipedema include the following:
— Complete decongestive therapy to include manual lymphatic drainage
— Increasing metabolism through exercise by activating the muscle pump to improve venous and lymphatic flow and muscle fitness
— Low-carbohydrate nutritional plans to keep obesity at bay
— Skin care to reduce dryness and cracks that increase the risk for infection, especially when lymphedema is present
— Wearing compression garments to assist in moving lymph and helping to prevent fibrosis
— Use of sequential pneumatic compression pumps to move lymph
Allen, M., Schwartz, M., & Herbst, K. (2020). Interstitial fluid in lipedema and control skin. Women’s Health Reports.
Falck, J., Nygardh, A., Rolander, B., Jonasson, L., & Martensson, J. (2025). Dealing with lipoedema: women’s experiences of healthcare, self-care, and treatments — a mixed-methods study. BMC Women’s Health.
Herbst, K., et al. (2021). Standard of care for lipedema in the United States. Phlebology.
Sanchez-De la Torre, Y., Wadeea, R., Rosas, V., & Herbst, K. (2018). Lipedema: Friend and foe. Hormone Molecular Biology and Clinical Investigation.
New Patient Folder
New to lipedema? The Fat Disorders Resource Society has designed a lipedema folder for the newly-diagnosed patient. This folder highlights the various treatments for lipedema and is perfect for doctors and therapists to provide to their patients. FDRS asks for a donation of $4 to cover the cost of printing the folder, shipping, and handling.
Additional Information
Complete Decongestive Therapy
Goals of Lipedema Care
Improving Lymphatic Function
Lipedema Resources in the US
Lipedema’s Effects on Gait
Videos About Lipedema