On March 9, the musician Doja Cat shared in a TikTok video that she believes she has lipedema, a chronic, progressive condition characterized by painful subcutaneous fat buildup. “Lipedema runs in my family,” she said in the post, calling her realization a late-night “epiphany.” “I always thought that it was cellulite.”

Lipedema affects around 11% of people worldwide—most of whom are women—which researchers say is likely an underestimate. Despite that prevalence, it’s long been misunderstood and underdiagnosed. Now, however, experts are hopeful that may finally be changing, thanks in part to rising awareness on social media.

We talked to experts about what lipedema is, why it’s so often mistaken for cellulite and obesity, and what treatment options can help.

Fat that doesn’t behave like fat

Lipedema often occurs in the hips, thighs, buttocks, and calves, in addition to the upper arms and, in more severe cases, the abdomen. These painful nodules are often associated with swelling and bruising, and typical lifestyle interventions like weight loss do not meaningfully reduce the affected tissue, says Dr. David Amron, a dermatologic surgeon who has pioneered advancements in lipedema reduction surgery and who founded the Roxbury Institute for the diagnosis and treatment of fat disorders.

Visually, lipedema often produces a noticeable contrast between a smaller torso and fuller lower limbs. “It has a characteristic look of disproportion in the extremities,” Amron says. The fat distribution is typically symmetrical and spares the hands and feet, sometimes creating what clinicians describe as a “cuff” at the ankles or wrists. “You tend to lose the shapeliness of the legs,” Amron says. 

No one knows exactly what causes lipedema, though it’s the subject of ongoing research. Scientists suspect it may involve inflammation and abnormal “leakiness” in blood vessels and lymphatic channels, allowing fluid to escape into surrounding tissue and trigger pain and the development of nodes, says Dr. Scott Hollenbeck, immediate past president of the American Society of Plastic Surgeons, who has researched the condition.

Hormones also play a role: Symptoms often emerge or worsen during periods of hormonal change, such as puberty, pregnancy, and menopause. There appears to be a genetic component, too, as many patients report that their mothers, grandmothers, or sisters had similar body shapes and symptoms. While no single gene mutation has been definitively identified, researchers are investigating potential inherited factors that may contribute to the disease.

Though lipedema was first identified in 1940, the condition was broadly ignored until recently. Roughly half of all research papers on it have been published within the last five years, according to the nonprofit Lipedema Foundation, which suggests the medical community is finally starting to take the disease seriously. Still, historically, it’s taken an average of 17 years for women to seek medical attention after first noticing symptoms, and an additional 10 years to receive a formal diagnosis, the foundation has found.

That’s in part because the condition is often confused with and mistaken for obesity. “What patients will tell you is that they went and saw their doctor, and their doctor said, ‘Oh, it’s just fat,’ and didn’t understand the distinction between regular fat tissue and lipedema,” Hollenbeck says. Lipedema tissue behaves differently from typical body fat, he adds, and is often tender, nodular, and prone to bruising. Normal adipose tissue, on the other hand, "is not painful.”

Traditionally, “a lot of doctors didn't really recognize this,” Hollenbeck says. “A lot of the old medical textbooks, and even new textbooks, don’t really have chapters on this. It’s a disease that hasn’t been described very well, and patients have really brought it to the attention of the medical community.”

The daily reality of living with lipedema 

Kasi Grosvenor was 3 years old when she started developing small, fatty nodules under the skin on her arms and legs. If you had rubbed your hand over these lumps, she says, you would have felt like you were squeezing a Beanie Baby or a bag of rice. They caused debilitating pain—but it took nearly four decades of misdiagnoses for her to learn, at 40, that she had lipedema.

“Your skin hurts—it’s not like a pain you can go take Tylenol for,” says Grosvenor, who’s now a project manager at the Lipedema Foundation. “An 8-pound chihuahua sitting on my lap could cause excruciating pain, and I’ve often referred to chairs as torture devices.” If somebody pinched her upper arm, the pain would radiate through her entire limb, and she’d still feel it 20 minutes later.

Living with lipedema can be agonizing. In survey data collected by the Lipedema Foundation, patients report an average pain score of about five out of 10 on a typical day—“pain that’s difficult to ignore,” says the foundation’s CEO, Jonathan Kartt—rising to a seven during flares.

The sensations can be constant and unpredictable, ranging from tenderness to deep, radiating discomfort. “It’s everything from feeling like shards of glass are going through you, to a burning sensation or aching,” says Catherine Seo, founder of Lipedema Simplified and the Lipedema Project, and director of the documentary The Disease They Call FAT, who lived for years without a diagnosis. “Do you know when you cut yourself, and it gets hot and swollen? Imagine that being chronic and inside your body.”

For some, even the lightest touch can trigger pain. “Other people don’t feel pain when their partner touches them,” says Dr. Maryam Zamani, a Beverly Hills plastic surgeon who treats lipedema patients and has the condition herself. “But that’s something you can relate to when you have this.” Many patients describe a deep, bruise-like sensitivity beneath the skin—a tenderness that lingers long after the pressure is gone.

The condition can also create a sense of physical heaviness and fatigue. Legs may feel weighed down; arms tire quickly during routine activities like styling hair. Over time, mobility can be affected—not because of lack of effort, but because the tissue itself is so inflamed and tender.

Blamed for a disease you didn’t cause

Physical pain is only part of lipedema's burden. Because the condition is often mistaken for weight gain, many women spend years blaming themselves before they receive a diagnosis. They diet more intensely, exercise more, and then try again. When the affected areas don’t change, the assumption—from doctors, loved ones, or themselves—is failure. “Fat bias is internalized,” Seo says. “Everybody tells me it’s me, that it’s my fault, and we internalize that.” Over time, she adds, that leads to “incredible shame.”

Seo describes a friend who recently drove from Florida to Pennsylvania to see a doctor she hoped would take her lipedema symptoms seriously. “She got in to see him, and he dismissed her,” she says. “I cannot tell you the number of women who have texted me or called me hysterical, having gone to see their doctor and been dismissed.”

That pattern of dismissal, coupled with years of unexplained pain, can take a profound psychological toll. Zamani says many of her patients arrive not only physically uncomfortable, but emotionally exhausted. “It affects self-esteem,” she says. Some struggle with anxiety, depression, or disordered eating after years of trying to “fix” a body that wouldn’t respond to traditional weight loss.

Zamani also notes that many women unconsciously adapt in ways that make the condition less visible to others and even to themselves. “Sometimes we self-conceal,” she says. As her legs became more prominent, she changed how she dressed, avoiding clothing that drew attention to them. “We’re not necessarily recognizing that, hey, the person two seats down from me might have the same thing,” she adds. When women adjust their wardrobes and learn to hide the areas that feel different, the condition can remain invisible, reinforcing a sense of isolation.

That’s why simply getting a diagnosis can be validating. When patients finally understand what’s happening, “they feel heard and recognized,” Zamani says. “They feel empowered.” Putting a name to symptoms reframes years of confusion, shifting the narrative from personal failure to medical reality.

A ‘playlist’ of therapies

While surgery to remove the abnormal fat tissue associated with lipedema can be life-changing for some patients, it’s not the first or only line of treatment.

“This is definitely a disease that has multiple prongs,” Zamani says. “Surgery is not the end-all, be-all.” Instead, care often begins with strategies to reduce inflammation and improve lymphatic flow. That includes compression garments like arm sleeves and thigh-high stockings; manual lymphatic drainage (a specialized form of massage that helps move fluid through the lymphatic system); and low-impact exercise, like Reformer Pilates, light bounding on a mini trampoline, or water aerobics, to promote circulation and muscle strength. Anti-inflammatory dietary approaches may also help some patients manage symptoms, even though weight loss alone doesn’t eliminate lipedema tissue.

Dozens of therapies can potentially make a difference, Grosvenor says, and she estimates she’s tried at least 40 in the process of figuring out what works best for her. Now, she spends an hour or two every day managing her condition. She uses pneumatic compression pumps—wearable sleeves that inflate and deflate to help move fluid through the lymphatic system—to reduce swelling and pain. She also incorporates vibration therapy into her routine. “I’ve used [a vibration plate] every day for five years under my desk,” she says.

Grosvenor describes her approach as a “playlist,” or a rotating set of therapies she draws from depending on how she feels that day. “Sometimes I’m in the mood for one thing, sometimes another,” she says. “I treat it as something I have to manage every day.”

Lipedema reduction surgery: corrective, not cosmetic

Many patients eventually consider surgical options, particularly if their symptoms worsen or their mobility becomes limited. The most common procedure is a specialized form of liposuction designed to remove lipedema fat while preserving surrounding lymphatic structures. Unlike cosmetic liposuction, lipedema surgery is not about contouring alone. Because the disease affects connective tissue and lymphatic pathways, how and where the surgeon removes the fat matters, Amron says. The goal, he explains, isn’t just aesthetic improvement but disease reduction—removing as much abnormal, fibrotic fat as possible while minimizing damage to the lymphatic system.

Grosvenor underwent five lipedema reduction surgeries over two years—procedures on her legs, arms, and abdomen. Her surgeon took a conservative approach, treating one region at a time, and each operation required about six weeks of recovery. But the changes, she says, were profound. “The lightness in my legs—just the ability to walk up a flight of steps without feeling like I was dragging concrete buckets—that was huge.” 

One of the most dramatic improvements came after lipedema tissue was removed from what she calls the “butt shelf,” or the area along her lower back. “The immediate relief I felt just sitting in a chair, not having all that tissue pressing into my back—that was the most impactful pain relief of all.” The surgeries didn’t eliminate every symptom, “but it very, very significantly changed my quality of life.”

Many patients report similar success stories. In some cases, surgeons remove more than 5 liters of diseased tissue during a single surgery, Hollenbeck says. “It can be pretty dramatic,” he adds. “One of the more impressive things to see is the before and after.” Patients tell him they feel lighter, more mobile, and less tender in areas that had been painful for years.

Yet access remains a major barrier. Despite growing recognition of lipedema as a medical condition, surgical treatment is often not covered by insurance. “A lot of these patients are paying out of pocket,” Hollenbeck says. Depending on the extent of disease, costs can climb into the tens of thousands of dollars. Advocates and clinicians are pushing insurers to recognize lipedema surgery as medically necessary rather than cosmetic—a shift they say is critical for patients who are debilitated by pain and mobility limitations.

Grosvenor was fortunate: She ultimately secured coverage for all of her surgeries. But she says the process was grueling. “It took me more work than my master’s degree capstone paper,” she says, describing months of documentation, appeals, and persistence. She managed it, she adds, in part because she’s a project manager. “It is not easy for a standard patient.”

Growing recognition of lipedema

There are signs that awareness is finally catching up. Last year, when the Lipedema Foundation did a session at the Obesity Medicine Association conference, more than 1,000 health care professionals showed up. Plus, “lipedema is now on the board exam for obesity medicine specialists,” Kartt says—a small but meaningful shift in how the condition is being recognized within mainstream medicine.

Seo sees that momentum on the ground. She recently co-edited what she calls the first medical textbook devoted entirely to lipedema, and hundreds of women now attend her organization’s workshops and conferences each year. She wants women to know that support exists: There’s a growing community of patients and clinicians who understand this condition.

“You’re not alone,” she says, a message she hopes will reach women who have spent years thinking their pain was a personal failure.