The doctors told him it was just weight gain. It took more than 10 years to discover the true diagnosis

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When Aisha Durhamprofessor of communications at the University of South Florida, entered perimenopause in her 40s, she began to notice changes in her body — not an uncommon phenomenon for many women at this stage of life, as hormone levels change. But Durham felt these changes were something else, given the severity of his symptoms.

First came the inflammation: a swelling that she describes as omnipresent and sometimes so painful that she spent days in bed. Then came the nodules: little hard bumps that ran up and down his legs.

Visits to multiple doctors resulted in a litany of diagnoses – and misdiagnoses. A doctor suspected the chronic inflammation was due to undifferentiated connective tissue disease (UCTD), a systemic autoimmune disease, and put her on hydroxychloroquine as treatment. (It wasn’t UCTD.) Another looked at Durham and told her she was just fat and her fat stores were changing due to perimenopause. (It wasn’t “typical” fat.) A third speculated that Durham’s pain was due to fibromyalgia. (It wasn’t fibromyalgia.) The nodules in Durham’s legs were alternately diagnosed as a spider bite and an allergic reaction. (False on both counts.)

A devoted patient, Durham followed doctor’s orders to overhaul her diet and exercise to lose weight. “I hired a dietitian. I did individual Pilates sessions, but everything hurt,” she says. These lifestyle changes failed to alleviate his symptoms, and after months of misdiagnosis or complete dismissal, Durham was desperate for clues.

She had a hunch that her chronic inflammation might have something to do with fluctuating hormone levels, and after falling down a YouTube rabbit hole, she landed on a scientific presentation by endocrinologist Karen Herbst, MD. In this video, Durham found his answer.

“She showed pictures and I said, ‘Those legs look like mine,’” Durham recalled.

The photos? They represented patients diagnosed with lipedema, a chronic, incurable disease that primarily affects women and is characterized by a disproportionate, symmetrical accumulation of often painful fat in the lower body and sometimes in the arms and/or lower trunk.

The images were a revelation to Durham, who decided then and there that if none of her local doctors took her seriously, she would fly to Arizona for a consultation with Dr. Herbst herself. About six months later, in Dr. Herbst’s office, she received the diagnosis she had been searching for: stage 2 lipedema.

“I cried,” Durham says of the moment. “I felt lighter. It didn’t eliminate the illness at all. It didn’t make it better. But it was so relieving to have a doctor confirming what I was experiencing.”

Cases like Durham’s are not unusual. Although about 5 to 12 percent of women in the United States are estimated to have lipedema, on average it still takes about 10 years to receive a diagnosis, according to the Lipedema Foundation, which is dedicated to advancing lipedema research and awareness. This delay is due to a lack of awareness of the disease as well as frequent misdiagnosis. That’s a decade of doctor visits, condescending dismissals, and unnecessary suffering. Even then, a diagnosis is just the first step in a long, often emotionally, mentally, physically, and financially burdened journey of managing or alleviating symptoms.

An underestimated disorder

Despite so many Few American women with lipedema have heard of it or had reason to suspect that the dimpling on their legs is anything other than cellulite. Although the condition has recently made headlines (singer Doja Cat speculated on TikTok earlier this year that she might be suffering from lipedema), it still remains largely under the radar and underdiagnosed.

So it might be surprising to learn that lipedema is not a new disorder. It was first described by two Mayo Clinic physicians, Dr. Edgar V. Allen and Dr. Edgar A. Hines, in 1940. And researchers say that artwork dating as far back as 3,000 BC has recorded the telltale pear-shaped body shape of lipedema—thin torsos punctuated by almost cartoonish hips, thighs, and buttocks—suggesting that even past civilizations recognized the lipedema, even though they may not have had it. name for it.

The label that Dr. Allen and Dr. Hines landed on is a portmanteau of lipid (fat) and edema (swelling). It’s a somewhat unfortunate nickname given its proximity to a separate but similar condition called lymphedema, which causes abnormal and usually asymmetrical swelling of tissue. But they are actually two separate diseases. To distinguish them, some members of the lipedema community tried to think of a new name (none stuck), while others leaned on a pronunciation in which the first syllable rhymes with “sky” rather than “jump.” (American English pronunciation is generally LIP-uh-DEEM-uhbut if you talk to enough people about it, you’ll probably hear it said both ways.) To confuse things even further? In some cases, lipedema and lymphedema may present as comorbidities in a patient. (More on that in a moment.)

There is no known cause of lipedema, although it is generally considered to have a strong genetic component. It often appears – or gets worse – during periods of hormonal fluctuation. An easy mnemonic to remember is the three Ps: puberty, pregnancy and peri/menopause. It is generally thought to be a connective tissue disorder, but this still seems up for debate. It has also been tentatively (and, in many cases, anecdotally) linked to a host of comorbidities, including hypermobility, Ehlers-Danlos syndrome, ADHD, and polyendocrine ovarian metabolic syndrome (PMS, formerly called PCOS). Again, more research is needed.

Lipedema is diagnosed by type and stages. Type indicates where fat is located on the body. Type I is the fat located between the belly button and the hip. Type II is the fat located between the pelvis and the knee. Type III is the fat located between the pelvis and ankle. Type IV is the fat located between the shoulder and wrist. Type V is fat between the knees and ankles. The stage indicates the severity of symptoms. Stage 1 is an accumulation of soft subcutaneous fat with largely smooth skin that may have small nodules beneath the surface. Stage 2 consists of more severe dimples or indentations with larger, more prominent nodules and hardened fatty deposits that may be fibrous. Stage 3 is marked by larger fatty deposits that may begin to overhang or noticeably extrude from the body. And then there’s stage 4, also known as lipolymphedema, which, as noted above, occurs when both lipedema and lymphedema are present.

Women may progress to stage 4 or remain stuck at an earlier stage. Some may not feel any pain from lipedema; others may feel severe pain during flare-ups. How and why lipedema progresses in some people and not others remains one of the mysteries that researchers are solving. In some cases, the pain and deformity caused by this excess fat accumulation can become so extreme that a woman has difficulty walking or carrying out the daily tasks of life.

“Several members of my family are completely disabled by this disease to the point of being in wheelchairs or having to walk with walkers or walking aids,” says Kasi Grosvenor, a 45-year-old project manager in Richmond, Virginia, who was diagnosed with lipedema at age 40.

Lipedema is diagnosed in stages, depending on the progression of the disease. Example steps (clockwise from top left): step 1, step 2, step 3, and step 4.

A very delayed diagnosis

So why Does it usually take women (this condition is rare in men, FYI) this long to be diagnosed with lipedema? Maddening statistical alert: the average age of diagnosis, according to the Lipedema Foundation register, is 48 years. As with many underdiagnosed and poorly understood women’s health issues, whether it’s PMS or endometriosis, much of the delay can be attributed to systemic issues that don’t have a quick or easy solution, says Jonathan Kartt, CEO of the Lipedema Foundation.

“Lipoedema really sits at the intersection of two areas that medicine has historically been very slow to fund and take seriously, which are chronic diseases and conditions that primarily affect women,” he says.

Indeed, a surprising number of clinicians are as ignorant of lipedema as the average person on the street. “Historically, medical schools haven’t really taught it,” Kartt says. Although some specialties, such as vascular medicine, have relevant training, Kartt says the real gap is in primary care, which is often a patient’s first step on the path to a diagnosis.

Another barrier to diagnosis is the lack of diagnostic tests for lipedema. Peeing in a cup, swabbing your mouth, or rolling up your sleeve for a blood test won’t get you anywhere. Diagnoses are made through a thorough review of the patient’s medical history as well as an examination. Doctors usually perform a visual assessment (looking for signs such as uneven fat distribution) and a physical assessment (detecting nodules or fibrosis, which distinguishes lipedema fat from regular cellulite).

If a doctor suspects that a patient has lipedema, there is yet another obstacle: In the United States, there is no diagnostic code for lipedema. The World Health Organization has classified lipedema as a separate disease in the International Classification of Diseases (ICD-11), but the United States still uses the old ICD-10, which is not the case. While this may seem like a simple paperwork issue, the consequences are much bigger than that. Diagnostic codes are needed by insurers to determine whether they will pay for particular procedures or…