Delays in Diagnosis
Most women learn they have POF after years of puzzling symptoms and frustrating doctors' visits. Up to one-fourth of women aren't diagnosed for five years after the start of menstrual irregularities. When a young, healthy woman complains of irregular periods, hot flashes, low libido, fuzzy thinking, and heart palpitations -- classic menopausal symptoms -- doctors often attribute them to stress and tell them to relax.
But "even one missed period can signal POF," says Lawrence N. Nelson, MD, principal investigator for a research project on POF at the National Institutes of Health (NIH), in Bethesda, Maryland, who maintains that doctors and patients need to put POF on their radar. A delay in diagnosis can lead to osteopenia -- low bone density -- and eventually osteoporosis.
Neither Tara MacDonald nor her identical twin, Colleen, who also has POF, had had periods from their early teens on. Tara's doctor blamed it on an active lifestyle, while Colleen's doctor attributed it to low body fat.
Both women paid the price. When Tara fell while hiking at 20, her doctor was astounded by her X-ray: Her hand was riddled with fractures, a sign of severe osteoporosis. It turned out her levels of follicle-stimulating hormone, or FSH (they rise as the pituitary gland works overtime to get the ovaries to work), were sky-high: She had POF. At the same time, the broken wrist Colleen had sustained at age 20 still hadn't healed. When she stopped the birth control pill and had her FSH measured (easier to do if a woman isn't using an oral contraceptive), she learned hers had also soared.
Though Colleen, of Laurel, Maryland, was on the pill to prevent pregnancy, women are often prescribed the pill to regulate their cycles. "It isn't until they go off it that they are diagnosed with POF," says Michael Heard, MD, a New Jersey-based reproductive endocrinologist.