Puffy legs, heavy aches, rippled skin: what is lipedema? | Well actually

The first thing Becca Gold noticed was his pants.

Throughout the spring and summer of 2023, his pants no longer fit him. Her legs became swollen, with a wavy texture and severe pain. In one year, the 32-year-old Austin-based podcaster went up four pant sizes, gained 30 pounds and found herself with constant leg pain. She’s always had a bit of cellulite, she says, but while her upper body seemed virtually unchanged, her legs now looked like they belonged to a “different person, overnight.”

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

While researching her symptoms online, Gold came across the Lipedema Foundation, an organization focused on a disease that was very similar to the one she was going through.

What is lipedema?

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

Lipedema is resistant to diet and exercise, says Gold – no changes will affect it. It’s not obesity, but it’s often confused. It is also not lymphedema, a condition in which lymphatic fluid builds up in the body, often after cancer surgeries that affect the functionality of the lymph nodes. The two are often 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. However, although it affects approximately 10% of women, lipedema is not well understood by doctors.

“Very few doctors 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 about 12,000 lipedema liposuction surgeries in nearly three decades. “They gave it a weak name,” he said of the disease. “It’s been mistaken for lymphedema. It almost seems made up.”

According to Amron, “between 90 and 95 percent” of patients who come through its doors have made their own diagnosis, usually after an online search or, increasingly, after reading a social media post. Recently, musician Doja Cat described on TikTok her “revelation” that she might have lipedema, and web searches regarding the condition are increasing.

What causes lipedema?

The cause of this disease is “still unclear,” Oliver says. Doctors know that it can be inherited genetically from either parent and that it contains a hormonal component related to the surges of estrogen that women tend to experience during puberty, pregnancy and menopause, he says.

This hormonal component explains why lipedema occurs almost exclusively in women. In times of estrogenic change, the disease appears to accelerate. It can develop from stage one lipedema – during which the swelling may not even be noticeable to the patient – ​​to a gradual intensification culminating in stage four lipedema, when patients may carry an amount of excess fat on their legs that seriously affects their quality of life.

In 2020, Diann Paz, now 52, ​​underwent a hysterectomy to remove a large tumor. Within weeks, her legs were red, swollen and painful. She saw several doctors before a vein specialist finally diagnosed her with lipolymphedema, a co-occurrence of unusual fat cells and a blocked lymphatic system. “I’ve already been through stage four, 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 the banking industry, she is unemployed and applying for disability. “It affected me in every way,” she says. Simple tasks like cooking and waiting in line have become difficult and the stress from her situation is intense.

Amron and others believe that lipedema results from weak connective tissue that allows fluid to seep into a patient’s fat layer, where fat cells begin to replicate, inflammation occurs, and fibrous scar tissue begins to form the disease’s telltale nodules: a lumpy texture visible through the skin and firm to the touch. Patients with lipedema often see a “cuff” or sharp demarcation between their significantly swollen lower legs and their unchanged feet.

Lipedema fatty tissue carries a genetic signature suggesting dysfunction of the tiny blood vessels that line 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 can result from damage to these sensitive cell walls, says Cifarelli. But it’s not clear why people with lipedema feel pain.

One of the most common dismissals women with lipedema receive – that they are simply overweight – doesn’t hold water. Cifarelli’s research found that women with lipedema tend to be in better metabolic health than those with obesity, and that the condition does not appear to increase the risk of diabetes.

How to treat lipedema?

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

For Paz, only aquatic therapy makes a difference in his pain. She would like to go daily, but insurers don’t always recognize lipedema as a condition that is medically necessary to treat, meaning the procedures aren’t always covered.

GLP-1 drugs show promise as anti-inflammatories. Gold, who was eventually diagnosed with lipedema, says tirzepatide GLP-1 almost eliminated his leg pain and improved the texture of his skin.

Lipedema-specific liposuction is the most important procedure available. It is technically more demanding than ordinary cosmetic liposuction, requiring smaller instruments, slower technique and specialized surgeons willing to treat areas of the leg historically avoided, such as the calf, due to the risk of visible scarring.

“For lipedema, we can’t move quickly,” explains Dr. Marc DuPéré, a Toronto plastic surgeon who has specialized in this disease for a decade. The results, he says, are unlike anything else in his practice. “The change between happiness and satisfaction before and after is huge,” he says.

Gold didn’t want to depend on injections forever, so she eventually had surgery on her lower legs, with more planned for her upper legs and arms. It cost over $20,000. Her insurance has already denied the bill once, although she is appealing. She had the procedure awake, getting up halfway through so her surgeon could assess the results under gravity.

A week after the procedure, she cleans 15 incisions per leg every evening. It’s too early to tell if her symptoms will completely disappear, but she’s looking forward to the results. “My legs were in constant pain, 24/7, before the surgery,” she says. “It’s like an investment.”

What many patients say they need most is to be believed. “When patients receive a diagnosis, it helps them move forward,” says DuPéré. It also “reduces depression and anxiety” that can come from feeling unfit through diet and exercise.

To increase visibility of the disease, Amron founded the Lipedema Society, the first medical organization dedicated to the disease, with the goal of introducing it into medical school curricula within five years. Gold is also spreading the word — on TikTok, where one of his first posts has nearly 2 million views.

It’s important that people don’t self-diagnose too quickly, Cifarelli cautions. Content creators say that, for example, having marks on your ankles from wearing socks could be a symptom. But these signs may be unrelated, and many women naturally carry more weight in their lower body. “The difference between lower body obesity and lipedema remains a live question,” says Cifarelli.

If you’re experiencing heaviness or pain in your legs that’s affecting your daily life, and weight gain in your legs that seems to have gotten worse around hormonal milestones, experts agree: Don’t panic, but don’t ignore it. Talk to your doctor and if they are unfamiliar with this condition, the Lipedema Foundation and Lymphatic Education and Research Network have resources.