When Aisha Durham, a professor of communication at the University of South Florida, entered perimenopause in her 40s, she began noticing changes in her body—a not uncommon occurrence for many women at this stage of life as hormone levels shift. But Durham sensed these changes were something else, given the severity of her symptoms. First came the inflammation: swelling she describes as pervasive and so painful, at times, that she spent days bedridden.
Next came the nodules: small, hard bumps that trailed up and down her legs. Visits to multiple doctors resulted in a litany of diagnoses—and misdiagnoses. One physician suspected the chronic inflammation was due to undifferentiated connective tissue disease (UCTD), a systemic autoimmune disorder, and put her on hydroxychloroquine as treatment. (It wasn’t UCTD.) Another looked at Durham and told her she was simply fat, and that her fat stores were shifting due to perimenopause. (It wasn’t “typical” fat.) A third surmised Durham’s pain was due to fibromyalgia. (It wasn’t fibromyalgia.) The nodules in Durham’s legs were, at turns, diagnosed as a spider bite and an allergic reaction. (Wrong on both counts.) A dutiful patient, Durham heeded doctor’s orders to overhaul her nutrition and exercise to lose weight.
I did one-on-one pilates sessions, but everything was hurting,” she says. These lifestyle changes did little to relieve her symptoms, and after months of being misdiagnosed or dismissed entirely, Durham was desperate for any clues. She had a hunch her chronic inflammation might have something to do with fluctuating hormone levels, and after falling down a YouTube rabbit hole, she landed on a scholarly presentation by endocrinologist Karen Herbst, MD.
In that video, Durham found her answer. They depicted patients who had been diagnosed with lipedema, a chronic, incurable condition that affects mostly women and is characterized by a disproportionate and symmetrical buildup of often painful fat in the lower body and sometimes in the arms and/or lower trunk. The imagery was a revelation for Durham, who decided then and there that if none of her local doctors would take her seriously, she would fly to Arizona for a consultation with Dr.
About six months later, in Dr. Herbst’s office, she got the diagnosis she’d been relentlessly seeking: stage 2 lipedema. It didn’t get rid of the condition at all.
It didn’t make it better. But it was just so relieving to have a doctor confirm what I was experiencing.” Cases like Durham’s are not unusual. Though it’s estimated that around 5 to 12 percent of women in the U.S. have lipedema, it still takes, on average, about 10 years to receive a diagnosis, according to the Lipedema Foundation, which is dedicated to advancing research and awareness of lipedema.
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