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The first thing Becca Gold noticed was her pants.

Throughout the spring and summer of 2023, her pants stopped fitting. Her legs became puffy, with a rippled texture and heavy ache. Within a year, the 32-year-old, Austin-based podcaster went up four pant sizes, gained 30lbs and found herself in constant leg pain. She had always had a little bit of cellulite, she says, but while her upper body appeared mostly unchanged, now her legs seemed to belong to a “different person, overnight”.

Working out with a trainer didn’t seem to help her lose weight, nor did walking more. “People would say: ‘Well, just go on a walk, you’ll feel better.’ And every time I went on the walk, I felt exhausted,” she says.

Searching the internet for her symptoms, Gold came across the Lipedema Foundation, an organization focused on a condition that sounded a lot like what she was going through.

What is lipedema?

The Lipedema Foundation describes lipedema as a chronic, progressive disorder in which abnormal fat tissue accumulates disproportionately in the lower body and sometimes upper arms, causing pain, heaviness and easy bruising.

Lipedema is resistant to diet and exercise, Gold read – no amount of change will affect it. It is not obesity, but is often mistaken for it. Nor is it lymphedema, a condition in which lymph fluid accumulates in the body, often after cancer surgeries affecting lymph node functionality. The two are frequently confused, and in some cases one can trigger the other.

Lipedema was first formally described at the Mayo Clinic in 1940, then named and clinically documented a decade later. Yet, despite occurring in an estimated 10% of women, lipedema is not well understood by doctors.

“There are very few physicians that 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,” says 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.”

According to Amron, “between 90 and 95%” of patients who come through his door have diagnosed themselves, usually after online research or, increasingly, seeing a social media post. Recently, the musician Doja Cat took to TikTok describing her “epiphany” that she may have lipedema, and web searches for the condition are on the rise.

What causes lipedema?

What causes the condition is “not yet clear”, says Oliver. Doctors do know it can be genetically inherited from either parent, and that it has a hormonal component related to bursts of estrogen women tend to experience during puberty, pregnancy and menopause, he says.

This hormonal component is why lipedema presents almost exclusively in women. At times of estrogenic change, the condition seems to accelerate. It can develop from stage one lipedema – during which swelling may not even be noticeable to the patient – through a progressive intensification culminating in stage four lipedema, when patients can carry an amount of excess fat on their legs that affects their quality of life severely.

In 2020, Diann Paz, now 52, had a hysterectomy to remove a large tumor. Within weeks, her legs were red, swollen and painful. She went to several doctors before a vein specialist finally diagnosed her with lipo-lymphedema, a co-occurrence of unusual fat cells and a blocked lymphatic system. “I had stage four already, where it’s the worst it can be,” she says.

Today, standing for more than five minutes is unbearable. Paz uses a scooter for anything beyond short distances. After more than 30 years in banking, she is unemployed and applying for disability. “It’s affected me in every way,” she says. 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 that allows fluid to leak into a patient’s fat layer, where fat cells begin replicating, inflammation occurs and fibrous scar tissue begins to form the condition’s telltale nodules: a lumpy texture visible through the skin and firm to the touch. Lipedema patients often see a “cuff” or a stark demarcation between their significantly swollen lower legs and their unchanged feet.

Lipedema fat tissue carries a genetic signature suggesting dysfunction of the tiny blood vessels lining it, according to Dr Vincenza Cifarelli, an assistant professor of pharmacology and physiology at Saint Louis University who has studied the disease for seven years. Bruising may result from damage to these sensitive cell linings, says Cifarelli. But it’s unclear why people with lipedema experience pain.

One of the most common dismissals women with lipedema receive – that they’re simply overweight – does not bear out. Cifarelli’s research has found that women with lipedema tend to be metabolically healthier than those with obesity, and the condition does not appear to raise diabetes risk.

How do you treat lipedema?

There is no cure for lipedema. Additionally, interventions are relatively limited, though catching the disease early can help patients control its progression. Compression garments are often used to help manage swelling, while manual lymphatic drainage massage, compression pumps and anti-inflammatory diets can also be useful, though their efficacy may vary from person to person.

For Paz, only aquatic therapy moves the needle on her pain. She’d like to go daily, but insurers don’t always recognize lipedema as a condition it’s medically necessary to treat, 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 that are historically avoided, like the calf, because of the likelihood of visible scarring.

“For lipedema, we cannot go fast,” says Dr Marc DuPéré, a Toronto plastic surgeon who has specialized in the condition for a decade. 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 finally had surgery on her lower legs, with more planned for her upper legs and arms. It cost more than $20,000. Her insurance has already 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.”

What many patients say they need most of all 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.