Doja Cat Is Not the Only One Self-Diagnosing Lipedema

Ever since middle school, I thought there was something wrong with my legs. The bottom half of my body felt extraterrestrial, like my limbs were drenched in something radioactive, with a rippled appearance and disproportionate curves that went beyond having an hourglass shape. But it wasn’t until I was 25 that I noticed a significant increase in swelling. During my period, I would have flare-ups, resulting in throbbing thigh pain until I was practically bedridden. I bruised easily, had constant numbness and tingling, and doughy softness. All the while, I felt something was off without any concrete explanation as to what it could be.

But then, about a year and a half ago, my algorithm had an influx of content about a condition called lipedema, and I increasingly became convinced I had it. Jump to this past March: Lipedema received heightened awareness when rapper and singer Doja Cat called learning that she had the disease “the craziest fucking epiphany,” on TikTok, adding that it had contributed to her body dysmorphia. “I always thought like, ‘Damn, what’s wrong with me?’” she said. The video received millions of views.

So what is lipedema exactly anyway? According to Emily Iker, M.D., it’s a chronic, four-stage, progressive adipose tissue disorder, characterized by inflammation, fibrosis (excessive buildup of hardened fibrous connective tissue), and pain. The Cleveland Clinic defines the condition as an abnormal accumulation of subcutaneous fat on the lower limbs, such as the hips, thighs, calves, and sometimes, the arms. The Lipedema Foundation characterizes stage 1 as having soft nodules and stage 4 as having a high infection risk and limited mobility. In advanced cases, lipedema can cause the inability to walk. “It’s a microvascular disease and a metabolic condition,” shares Iker, a distinguished leader in the field of lymphatic disorders and director at the Lymphedema Center in Santa Monica, California. The disorder often coincides with a period of hormonal changes during puberty, after pregnancy, or during menopause.

Physically, because of the way the fat accumulates, lipedema is routinely misdiagnosed as cellulite or weight gain. When I was a teenager, the ripples on my legs were always dismissed as standard cellulite. It is unresponsive to traditional weight loss methods and is easily confused with lymphedema (a swelling condition caused by a buildup of lymph fluid), or standard fat. Lipedema is commonly genetic, and like Doja, the disorder also runs on my mother’s side of the family.

Although it’s a medical condition, lipedema is largely undetected, and most primary care doctors are unaware of its existence. “I would say 10 to 15 percent of the female population have it, if not more [while] 90 percent are misdiagnosed or undiagnosed,” says Iker, adding that she recently treated a 19-year-old patient who came in after seeing lipedema content online. There is a plethora of Facebook groups with thousands of members dedicated to getting answers about the condition, like Lipedema Besties, Lipedema Care, and Anti-Inflammatory Diet and More for Lipedema Ladies.

Perhaps the most unspoken effect of lipedema is on mental health; eating disorders, attempted suicide, depression, stress, fatigue, and low self-esteem are highly prevalent due to accelerated amounts of internalized body shame and routine medical gaslighting. “There is a mental health toll from carrying a condition that is quite painful and debilitating [and] people don’t believe you,” says Kasi Grosvenor, project manager at the Lipedema Foundation.

“Physically, because of the way the fat accumulates, lipedema is routinely misdiagnosed as cellulite or weight gain.”

“When I got the diagnosis, I cried for 24 hours,” says Soraya Nodrab, a content creator, who began posting about her PCOS and stage 3 lipedema after experiencing 14 years of misdiagnosis. She had previously blamed the symptoms on not being active enough, despite strict dieting and workout regimens. “Until then, I always thought it was my fault, so I thought it was fixable,” Nodrab adds. Since the condition can progress without being addressed, it can feel like tirelessly playing “Where’s Waldo” for a diagnosis.

Those with lipedema also can experience hyper-objectification due to the curves and shape. “People ask me where I’ve had my BBL and I’m like, ‘It’s not a BBL, it’s a condition,’” says Nodrab. Doja Cat also said on her TikTok that people noticed her exaggerated body shape caused by lipedema, and would “point and gawk,” adding with a hint of sarcasm, “It was so crazy to have all this ass. Boo hoo, boo hoo.” As someone who grew up in the early aughts and remembers the idealized skinny “heroin chic” body type, I was acutely aware of the size of my ass and how it didn’t make sense with my waistline. The Kardashianesque hourglass ushered in the “slim-thick” Instagram baddie of the 2010s, and although this was a closer representation of my body, I never could grapple with the column-like appearance of my knees and the texture of my flesh.

In order to make a diagnosis, Iker utilizes clinical evaluation along with the support of an ultrasound, which identifies the tissue structure through imaging the fibrosis in the fascia. Conservative therapy, or nonsurgical treatments, are crucial to promote circulation since there is no cure. To treat the condition, Iker recommends manual lymphatic drainage therapy, an anti-inflammatory diet, and medical-grade compression garments to reduce and manage swelling and pain. “It’s overwhelming to realize how many conservative treatment therapies are out there,” Grosvenor says, adding that there are over 70 such therapies patients can adapt into their routine. “I consider that list like a playlist.…I stack treatments that make sense for living my every day life,” he says. “Many women have remarkable results with conservative therapies alone and are able to maintain at stage 1, maybe stage 2, without surgical intervention.”

Doja Cat performs in Kigali, Rwanda.

But for some, plastic surgery is the solution. “A plastic surgeon diagnosed me and my mother simultaneously,” says Andrea Giancontieri, founder of the Whiny GYNie, an organization dedicated to destigmatizing perimenopause, and a Gen X advocate for lipedema, who recently had two knee-replacement surgeries because of the condition. She underwent liposuction for lipedema nine years ago. “There’s a tremendous financial cost to having lipedema and you don’t realize the physical cost while you’re living it,” she says.

If plastic surgery is up for consideration, it’s important to look for a specialist. “Surgery should not be done by just anybody, even a cosmetic or plastic surgeon who says they do liposuction,” says David Amron, M.D., founder of The Roxbury Institute and creator of The Advanced Lipedema Treatment (ALT) program. “You’re dealing with complicated areas, a disease, scar tissue, lymphatic issues, but the center has to be focused on lipedema.” He emphasizes that if done incorrectly, plastic surgery procedures can result in necrosis. Additionally, specialized liposuction can help reduce and remove fluid build-up from the lymphatic disorder, but it is not a permanent cure and is expensive (often not covered by insurance).

Although I’m not necessarily condoning or advocating for self-diagnosis, on average, it takes over 10 years to even get an official medical diagnosis according to the Lipedema Foundation. I visited three different endocrinologists over my symptoms and it was routinely chalked up to my PCOS. No one even bothered to evaluate my legs when I asked due to the pain. With the rise of lipedema being discussed online, there are real concerns of misdiagnosis and perhaps the biggest takeaway is that if you are convinced you have the condition, go and see either a vascular or lymphatic specialist who is familiar with it for an evaluation.

“I was acutely aware of the size of my ass and how it didn’t make sense with my waistline.”

In the age of being body sculpted and snatched into a homogeneous oblivion, uncovering the likelihood that I suffer from lipedema has offered a reprieve from a lot of my internalized body shame. Since my self-diagnosed suspicions of being in stage 2, I have greatly rewired my life with conservative treatment, which has increased the feeling in my legs. Although we are in a time where lymphatic drainage massages, using a vibration plate, and wearing compression garments are considered trendy, my body requires these methods every day to promote circulation due to the impaired blood flow and lymphatic disruption. After my interview with Iker, I sent her photos of my legs and she responded the next morning via email, “Yes. It looks like lipedema. I will confirm with an ultrasound when you come to see me.”