Gail Donnelly’s classmates nicknamed her “Knobby” because she was so skinny, all her bones seemed to poke out from under her skin.
But when Donnelly turned 27 that once knobby frame disappeared under mysteriously ballooning weight. Her diet hadn’t changed, she was still walking several miles a day, but she gained 50 pounds in just six months.
Her doctor thought the cause was ovarian cysts. It took 10 years and two surgeries before a new doctor accurately diagnosed her with polycystic ovary syndrome (PCOS).
Symptoms of PCOS in women often show up in adolescence and may include irregular periods and excess hair on the face, chest or back - all caused by high levels of male hormones.
It’s a serious metabolic disorder and one of the major causes of hormonally related infertility, yet the disorder remains largely undiagnosed and unknown. About five million women in the US are affected by it.
“Women are told they are too fat and aren’t taken seriously for a long time,” said Andrea Dunaif, professor of medicine at Northwestern University Feinberg School of Medicine, who led the study.
“They go to an average of four doctors before they are diagnosed. They have been to physicians who say ‘there is nothing wrong with you, don’t worry’,” said Dunaif.
After Dunaif began treating Donnelly with medication for insulin resistance - which had caused her rapid weight gain, Donnelly’s excess pounds dropped off and she was able to become pregnant. “If I had known about this sooner, my life would have been entirely different,” Donnelly said.
PCOS gets its name from the small ovarian cysts found in the first women studied, though not all women who suffer from PCOS have these cysts. Dunaif would like to rename the syndrome “Syndrome XX” to bring it into the spotlight.
Before she received the news about PCOS, Donnelly, an ordinarily happy person, had sunk into a deep depression and her boyfriend accused her of letting herself go, said a Northwestern release.
Dunaif, a national expert, knows otherwise. The complex genetic disease has long-term health risks throughout a woman’s lifespan, including obesity and double the rate of metabolic syndrome, a constellation of risk factors for diabetes and heart disease.