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Kristin Rhodes's life was on track. At 32, she had finished graduate school, and she and her husband had booked a vacation to Europe, where they hoped to conceive their first child. Rhodes, a nurse-practitioner, had gone off birth control pills to prepare. At a routine gynecological exam before the trip, a nurse told her she was pregnant. Rhodes was thrilled. But the next day, she learned there had been a mistake. She wasn't pregnant; she appeared to be in menopause.
"I didn't want it to be true," she says. Then she recalled that her menstrual cycle had recently gone from 36 to 112 days. She also felt overheated whenever she curled up with her husband to watch television. "I blamed it on our new velour couch," says Rhodes, now 38. "I now realize I was having hot flashes."
Previously referred to as "early menopause," premature ovarian failure (POF) affects up to 10 percent of women under 40, a lot more than the 1 percent usually cited by the medical literature.
"This disorder is not as uncommon as we thought," says Michelle Warren, MD, director of the Center for Menopause, Hormonal Disorders, and Women's Health at Columbia- Presbyterian/Eastside, a medical facility in New York City. Spontaneous POF -- meaning it's not caused by surgical removal of the ovaries, radiation, or chemotherapy -- is the main reason young women stop having periods. It strikes women during their prime reproductive years -- the average age of spontaneous POF is 31.
Doctors aren't sure what triggers POF. It might occur because a woman is born with fewer egg follicles than normal, or because the ones she has don't work properly. About 4 percent of women with POF may have an autoimmune problem in which their bodies "attack" the follicles.
Whatever the cause, the toll is high. Women must cope with a low libido and hot flashes, as well as osteoporosis; they also feel as though they have been robbed of their womanhood. Tara MacDonald, 26, of Honolulu, says she felt "like a fake woman" when she was diagnosed at 21. Not surprisingly, women frequently plunge into depression.
"It was like watching a train wreck and not being able to do anything," says Rhodes's husband, Dave, about her diagnosis. Rhodes says she collapsed into "gut-wrenching" sobs in the months following it.
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.
Although about 5 percent to 10 percent of women with spontaneous POF become pregnant without medical intervention, sometimes as much as a decade after their diagnosis, there is no way to predict which women will.
Currently there is no cure for POF. To replenish a young woman's estrogen levels, keep her from losing bone, and alleviate menopausal symptoms, most doctors prescribe hormone replacement therapy, a combination of estrogen and progestin. Long-term HRT is controversial for women who enter menopause at the normal age -- from about 40 to 55 -- but an accepted protocol for women with POF. Some women with POF are also given testosterone, which is produced by the ovaries in small quantities and may improve cognitive and sexual functioning.
There is hope. Scientists recently identified a gene that may lead to a screening test for POF. At the NIH, Dr. Nelson is trying to "reverse" autoimmune POF so that some of the women might be able to conceive. In the meantime, Dr. Heard advises women to research their family trees. In 10 to 30 percent of cases, a woman with POF has a female relative with the condition. Knowing you're at risk should prompt you to have your FSH levels regularly checked. If they're creeping up, you may decide to have children sooner rather than later, and take steps to slow bone loss.
Awareness is essential. Many women don't view a change in their menstrual patterns as important, so they may not mention it to their doctors. "There is a devastating level of suffering associated with this diagnosis, since it's so final," says Nanette Santoro, MD, director of reproductive endocrinology at Albert Einstein College of Medicine, in New York City. "Since there is such a narrow window of opportunity to help these women get pregnant, doctors should check for POF sooner than they do."
Kristin Rhodes and the MacDonald twins eventually came to terms with their condition, although it took several years and lots of tears. Rhodes, who felt less alone after joining an online support group for women with POF, occasionally lectures about menstrual health at a local college. The twins recently participated in NIH research investigating treatments for POF patients and whether women who have the autoimmune form of the disorder can eventually get pregnant. All three women are considering other ways to become parents, including adoption. Says Tara, "I would give anything to have kids."
POF Support Group www.pofsupport.org For more information on POF, visit www.earlymenopause.com
Originally published in Ladies' Home Journal magazine, April 2005.