The Hidden Struggle of Lipedema
Becca Gold first noticed something was wrong when her pants no longer fit. Over the course of spring and summer 2023, she experienced a sudden change in her body. Her legs became puffy, with a rippled texture and a constant ache. Within a year, she had gained 30 pounds, gone up four pant sizes, and found herself dealing with unrelenting leg pain. While her upper body remained largely unchanged, her legs seemed to belong to a different person overnight.
Gold tried working out with a trainer and walking more, but nothing seemed to help her lose weight or ease her discomfort. People would suggest going for a walk, saying it would make her feel better. However, every time she went on a walk, she felt exhausted instead.
Searching online for her symptoms, Gold came across the Lipedema Foundation, an organization focused on a condition that matched what she was experiencing.
What is Lipedema?
The Lipedema Foundation describes lipedema as a chronic, progressive disorder where abnormal fat tissue accumulates disproportionately in the lower body and sometimes the upper arms. This leads to pain, heaviness, and easy bruising. Unlike obesity, lipedema is resistant to diet and exercise, and it is often mistaken for it. It is also not lymphedema, a condition involving the accumulation of lymph fluid, which can occur after cancer surgeries affecting the lymph nodes. These two conditions are frequently confused, and in some cases, one can trigger the other.
Lipedema was first formally described at the Mayo Clinic in 1940 and later clinically documented a decade later. Despite affecting an estimated 10% of women, it remains poorly understood by many doctors.
“There are very few physicians who are able to diagnose lipedema,” says Dr Guillermo Oliver, director of the Center for Vascular and Developmental Biology at Northwestern University. “It was never taught to us in medical school,” adds Dr David Amron, a Los Angeles plastic surgeon who has performed roughly 12,000 lipedema liposuction surgeries over nearly three decades. “They gave it a weak name,” he says of the disease. “It got confused with lymphedema. It sounds almost made up.”
The Rise in Awareness
According to Amron, between 90 and 95% of patients who come through his door have diagnosed themselves, usually after online research or seeing a social media post. Recently, the musician Doja Cat described on TikTok her “epiphany” that she may have lipedema, and web searches for the condition are on the rise.
Causes of Lipedema
The exact cause of lipedema is not yet clear, according to Oliver. Doctors do know it can be genetically inherited from either parent and has a hormonal component related to estrogen fluctuations during puberty, pregnancy, and menopause. This hormonal aspect is why lipedema almost exclusively affects women. At times of estrogenic changes, the condition seems to accelerate.
Lipedema progresses from stage one, where swelling may not even be noticeable, to stage four, where the excess fat on the legs severely impacts quality of life. Diann Paz, now 52, had a hysterectomy in 2020, and within weeks, her legs were red, swollen, and painful. She was eventually diagnosed with lipo-lymphedema, a co-occurrence of unusual fat cells and a blocked lymphatic system.
Today, standing for more than five minutes is unbearable for Paz. She uses a scooter for anything beyond short distances and has been unemployed for over 30 years. Simple tasks like cooking and standing in line have become difficult, and the stress of her situation has been intense.
Amron and others believe that lipedema results from weak connective tissue allowing fluid to leak into the fat layer, leading to replication of fat cells, inflammation, and fibrous scar tissue forming the condition’s telltale nodules. Lipedema patients often see a “cuff” or a stark demarcation between their significantly swollen lower legs and their unchanged feet.
Treatment and Management
There is currently no cure for lipedema. Interventions are limited, though early detection can help control its progression. Compression garments, manual lymphatic drainage massage, compression pumps, and anti-inflammatory diets can be useful, though their effectiveness varies.
For Paz, only aquatic therapy helps manage her pain. She would like to go daily, but insurers often don’t recognize lipedema as a condition requiring treatment, meaning interventions are not always covered.
GLP-1 medications are showing early promise as anti-inflammatories. Gold, who was eventually diagnosed with lipedema, says the GLP-1 tirzepatide nearly eliminated her leg pain and improved her skin texture.
Lipedema-specific liposuction is the most significant intervention available. It is more technically demanding than ordinary cosmetic liposuction, requiring smaller instruments, slower technique, and specialized surgeons willing to treat areas of the leg historically avoided due to scarring concerns.
“For lipedema, we cannot go fast,” says Dr Marc DuPéré, a Toronto plastic surgeon specializing in the condition. The outcomes, he says, are unlike anything else in his practice. “The change between happiness and satisfaction before and after is humongous,” he says.
Gold didn’t want to rely on injections indefinitely, so she had surgery on her lower legs, with more planned for her upper legs and arms. It cost more than $20,000, and her insurance denied the bill once, though she is appealing. She had the procedure awake, standing up partway through so her surgeon could assess the results under gravity.
A week out from the procedure, she has been cleaning 15 incisions per leg each evening. It’s too early to tell whether her symptoms will ease completely, but she’s eager for the results. “I had pain in my legs all the time, 24/7, before the surgery,” she says. “It’s like an investment.”
Raising Awareness and Seeking Support
What many patients say they need most is to be believed. “When patients get a diagnosis, it helps them move forward,” DuPéré says. It also “reduces depression and anxiety” that can come from feeling like they’re simply failing to be fit through diet and exercise.
To raise the disease’s profile, Amron has founded the Lipedema Society, the first medical organization dedicated to the condition, with the goal of getting it into medical school curricula within five years. Gold is spreading the word too – on TikTok, where one of her early posts has nearly 2 million views.
It’s important for people not to self-diagnose too quickly, cautions Cifarelli. Content creators claim that, for instance, having indents on your ankles from wearing socks could be a symptom. But such signs may be unrelated, and many women naturally carry more weight in their lower bodies. “How lower body obesity is different from lipedema is still an active question,” says Cifarelli.
If you’re experiencing leg heaviness or pain that affects your daily life, and weight gain in your legs that seems to have worsened around hormonal milestones, experts agree: don’t panic, but don’t dismiss it. Talk to your doctor, and if they’re unfamiliar with the condition, the Lipedema Foundation and the Lymphatic Education and Research Network offer resources.
