June 9, 2010
Recently graduated from college and living in Los Angeles, Christine Eads went from doctor to doctor, hoping someone could figure out why her periods had stopped and why she often awoke in the middle of the night drenched in sweat.
They provided lots of possible explanations but no answers:
She was too skinny.
She suffered from post-traumatic stress disorder.
She should start taking the pill.
She should stop taking the pill.
But they pretty much agreed that there was no way a woman who hadn't menstruated in five years could conceive a baby.
Finally, her then-boyfriend learned of a National Institutes of Health doctor who studied women with her symptoms.
Eads moved back to her native Northern Virginia and went to see Lawrence Nelson, an obstetrician/gynecologist at the National Institute of Child Health and Human Development in Bethesda, Md.
Nelson immediately recognized that Eads had an uncommon condition called primary ovarian insufficiency, or POI. It affects fertility and leads to osteoporosis and other conditions related to inadequate estrogen production.
Once known as "premature menopause," the name change reflects how research has changed the way doctors think about the condition.
"We need to divorce this from menopause," Nelson says, not to raise false hopes but to erase POI's stigma: A diagnosis of premature menopause affects women's self-image and emotional health.
"Menopause is defined as the permanent cessation of menstrual cycles and the permanent cessation of fertility," Nelson notes. "The word implies that there aren't any eggs left in the ovary that work."
Sure, occasionally there's a report in a medical journal about a POI patient who got pregnant, he says, but "everybody assumed it was a really rare thing, a fluke."
In primary ovarian insufficiency, "there probably is a period of time where there is less-than-optimal ovarian function but not absence of ovarian function," says Paula Hillard, a Stanford University OB/GYN and board member of Rachel's Well, a POI advocacy group.
"We don't completely understand that, and that's one of the reasons why Larry Nelson's studies are so very, very important," Hillard says.
In fact, Nelson and Hillard say, probably 5 percent to 10 percent of women with primary ovarian insufficiency are able to conceive.
Eads' diagnosis at 30 sent her reeling. "I was so devastated," says Eads, now 40 and co-host of "Broadminded" on SiriusXM Radio.
Hoping to help save other women from a similar fate, Eads enrolled in one of Nelson's studies. All the participants were given estrogen patches to wear.
Several months into it, she was asked to come in so the researchers could repeat a blood draw. Something about her hormone levels had looked odd.
Nelson himself called her with the news. "I thought something was wrong," she recalls.
"Are you sitting down?" she says Nelson asked her. "You're not going to believe this. I've got some great news." The reason her hormone levels had looked out of whack? She was pregnant.
When she heard the news, "I was in shock, but I didn't want to tell anybody," Eads says. "I didn't really believe him. I thought maybe they made a mistake."
Eads' son, Aidan, a soccer- and math-loving second-grader, celebrated his 8th birthday this month. Maybe it was the estrogen patch, says Eads, a single mother. Definitely, though, "it was an act of God," she says. "I think he's a total miracle."
Aidan's conception, and a few others in women in his studies, spurred Nelson to study further the fertility potential in POI patients. In research posted online last month by the journal Fertility and Sterility, Nelson and his co authors compared the ovaries and hormone levels of 97 primary ovarian insufficiency patients and 47 women with normal periods.
Using ultrasound, the researchers were surprised to find that three-fourths of the POI patients had follicles - the fluid-filled sacs in the ovary that give rise to egg cells - capable of producing ovarian hormones.
This was the problem, though: While the patients' pituitary glands were releasing plenty of follicle-stimulating hormone, or FSH, which causes follicles to grow, the glands also were releasing excessively high levels of luteinizing hormone, or LH.
LH normally surges once a month, signaling a follicle to break open and release an egg.
Those constantly high LH levels in women with POI cause follicles to try to break open and release an egg too soon. "These women are getting the signal to ovulate all the time," before their follicles are mature enough, Nelson says.
The next step: See if estrogen therapy might suppress LH in POI patients and improve their ovulation rate, says Nelson, who's ready to start such a study as soon as he finds a company that will provide the estrogen and a placebo.
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