The first thing that caught Becca Gold’s attention was her pants. Throughout spring and summer of 2023, they just stopped fitting. It was strange, actually. Her legs swelled up, feeling heavy and aching. In just a year, the 32-year-old Austin-based podcaster went from her usual size to four sizes larger, gaining 30 pounds overall. Although her upper body stayed somewhat unchanged, her legs felt like they belonged to someone else—all of a sudden.
She tried working with a trainer and walked more, but to no avail. “People suggested going for a walk; they said it would help. But every time I did, I just felt wiped out,” she shared.
As she searched online for answers about her symptoms, Gold came across the Lipedema Foundation, an organization devoted to a condition that seemed to mirror her own experience.
What is lipedema?
The Lipedema Foundation defines lipedema as a chronic disorder characterized by the abnormal accumulation of fat in the lower body and sometimes the upper arms, which can lead to pain, heaviness, and easy bruising.
Gold learned that lipedema doesn’t respond to diet or exercise; it’s resistant to those efforts. It’s not the same as obesity, though it’s often confused with it. Nor is it lymphedema, a condition in which lymphatic fluids accumulate, usually after surgeries affecting lymph nodes. The two conditions often get mixed up, and sometimes one can trigger the other.
Lipedema was first formally identified at the Mayo Clinic way back in 1940, and a decade later, it was named. Yet, despite affecting an estimated 10% of women, it remains largely misunderstood in the medical community.
“Very few doctors can diagnose lipedema,” said Dr. Guillermo Oliver from Northwestern University.
Dr. David Amron, a plastic surgeon in Los Angeles, pointed out that they never covered this in medical school. “They gave it a weak name. It got confused with lymphedema, which makes it sound almost fictional,” he said.
According to Amron, a staggering “90 to 95%” of patients end up self-diagnosing thanks to online research or social media. Recently, musician Doja Cat spoke on TikTok about her realization that she might have lipedema, and subsequently, searches for the condition have spiked.
What causes lipedema?
The exact causes of lipedema remain unclear. What specialists do know is that it can be passed down through families and has a hormonal component, as estrogens seem to play a role during puberty, pregnancy, and menopause.
This hormonal aspect is one reason lipedema mainly affects women. These hormonal shifts seem to exacerbate the condition, which can progress from a barely noticeable stage to stage four, where quality of life drastically suffers due to excess fat accumulation.
In 2020, Diann Paz, now 52, underwent a hysterectomy to remove a large tumor. Soon after, her legs became swollen, red, and painful. She sought help from various doctors before a vein specialist diagnosed her with lipo-lymphedema—a mix of abnormal fat and a blocked lymphatic system. “I was already at stage four, which is the most severe,” she noted.
Today, standing for long periods is nearly impossible for her. She uses a scooter for anything beyond short distances. Having worked in banking for over three decades, she’s now unemployed and seeking disability support. “This has impacted every aspect of my life,” she lamented, sharing how simple chores like cooking or waiting in line have become major challenges.
Amron believes that lipedema stems from weak connective tissue, which allows fluid to leak into fat layers. This leads to fat cell replication, inflammation, and the formation of fibrous nodules—characteristics visible through the skin. Patients often notice a stark contrast, or “cuff,” between their swollen lower legs and unchanged feet.
Dr. Vincenza Cifarelli from Saint Louis University has studied the condition for seven years. She found that lipedema fat tissue shows signs of dysfunctional blood vessels. Bruising in patients may come from damage to these tissues, though the pain isn’t fully understood.
One common misconception directed at women with lipedema is that they’re simply overweight. However, Cifarelli’s research suggests women with lipedema tend to be metabolically healthier than those with obesity, and the condition doesn’t elevate diabetes risk.
How do you treat lipedema?
Currently, there’s no cure for lipedema, and treatment options are somewhat limited. Catching the condition early helps in managing its progression. Compression garments, manual lymphatic drainage massages, compression pumps, and anti-inflammatory diets can be beneficial, though results may vary from person to person.
Paz finds that only aquatic therapy alleviates her pain. She wishes she could go every day, but insurance often doesn’t recognize lipedema as a treatable condition, leading to coverage denials.
GLP-1 medications are showing some promise as anti-inflammatories. Gold says that after being diagnosed with lipedema, using GLP-1 tirzepatide significantly reduced her leg pain and improved her skin texture.
Lipedema-specific liposuction is the most significant treatment available, though it’s more intricate than regular cosmetic procedures. It requires specialized surgeons and technical precision to avoid visible scarring, particularly in challenging areas like the calves.
“For lipedema, we cannot rush,” stated Dr. Marc DuPéré, a Toronto surgeon specializing in the condition. The transformative results are profound. “The difference in patient satisfaction before and after is enormous,” he added.
Gold opted for surgery on her lower legs after weighing her options. While it was quite costly—over $20,000—her insurance has already denied coverage once. She hopes to appeal this decision. The procedure was done while she was awake, allowing the surgeon to evaluate the results in real time.
A week post-surgery, she’s managing 15 incisions on each leg each evening. It’s early to say if her symptoms will entirely resolve, but her optimism is palpable. “I lived with persistent pain before the surgery,” she mentioned. “It feels like an investment in my future.”
Many patients emphasize the importance of being believed. “Getting a diagnosis helps immensely in moving forward,” noted DuPéré. It also reduces the anxiety and depression that can stem from feeling like one is failing to improve through traditional methods.
To raise awareness, Amron founded the Lipedema Society, aiming for the condition to be included in medical school curricula within five years. Gold is also spreading the word—she’s active on TikTok, where one of her early videos has nearly 2 million views.
Cifarelli does urge caution against quick self-diagnoses. Some suggest that having marks from socks might indicate lipedema, but these symptoms might not be related. Many women naturally have more weight in their lower bodies. “The distinction between lower body obesity and lipedema is still an ongoing discussion,” she stated.
If you’re grappling with leg heaviness or pain that disrupts your daily routine, and have noticed weight gain in your legs coinciding with hormonal changes, it’s wise not to ignore it. Consult your doctor, and if they seem unfamiliar with lipedema, both the Lipedema Foundation and the Lymphatic Education and Research Network can provide helpful resources.
