When her pregnancy test showed up positive, Ines Acevedo did not believe she was pregnant. After years of trying to conceive, she had recently learned that at the root of her problems - the disappearance of regular menstrual cycles, the weight gain and hair growth - lay an endocrine disorder that rendered it near-impossible for her to conceive.
But her new doctor had started her on a drug previously reserved for diabetics, and it had ameliorated many of her symptoms - most importantly, restoring her menstrual cycles. Now, against all odds, the dipstick’s pink color assured her that her dream had become reality.
She repeated the test just to be sure: “Magenta pink.”
Acevedo and her husband, who live in Pembroke Pines, were delighted. “We had already sat down and had that big conversation: What if we’re not parents? He walked around the house in shock,” she recalls. In June 2000, Janelle Marie Gutierrez was born.
A decade ago Acevedo might never have successfully borne a daughter. She might never have even received a diagnosis for the constellation of symptoms that had plagued her.
The past five years have brought a surge of medical and patient interest in Acevedo’s condition, Polycystic Ovarian Syndrome. As doctors learn more about this disorder, they have started treating it with insulin-sensitizing drugs, the same substances that prompt a diabetic to decrease sugar production.
These drugs appear to work wonders in some patients, like Acevedo, who have difficulty conceiving. Hollywood physician Kenneth Gelman, who devotes about half his practice to PCOS, sees about one to two pregnancies a week in patients recently placed on the drug.
PCOS occurs when a woman overproduces insulin. The increased insulin leads to abnormally high levels of male sex hormones, or androgens, such as testosterone. The excessive androgens give the body the go-ahead to put on weight, develop acne and cease menstrual cycling.
This mix can morph the ovaries from their normal rounded shape to football-shaped organs dotted with follicular cysts, hence the syndrome’s name. The cysts arise from stunted follicles that do not develop into eggs because of the out-of-whack hormones in the body.
In the past, doctors had few tools to fight PCOS. Their best bet was to prescribe birth control pills that would take over the work of hormonal regulation for the woman, ease those side effects, and “restore” cycles.
Except, of course, that prevented conception.
“Birth control pills are just masking the problem. They’re not treating it specifically,” says Dr. Neil Goodman, a clinical professor at the University of Miami School of Medicine and endocrinologist in private practice in Miami. The insulin-sensitizing drugs, however, halt the runaway hormonal process in its tracks. While the jury’s still out on how exactly these drugs work, they appear to reduce the need for the body to overproduce insulin. Lower insulin levels translate into lower androgen levels, allowing the woman to menstruate normally and opening the door for conception.
“It is a treatment that is much closer to dealing with the cause,” says Goodman, chair of a committee that in 2001 issued professional guidelines for the treatment of PCOS and other conditions involving over-production of androgens. Another, less well-publicized form of the disorder involves an excess of testosterone originating in the woman’s adrenal glands, not ovaries.
Studies confirm that women who have the ovarian form of the disorder improve with the insulin-sensitizing drugs, which are not specifically approved for PCOS. Weight loss also appears to reduce their troubles, as the body is more likely to overproduce insulin if it’s obese.
Given how little was known about PCOS a decade ago, it’s surprising how common it is. Estimates place the rate of occurrence somewhere between 5 percent and 10 percent of all women, many of whom go undiagnosed.
Some professionals, like Gelman, suspect the incidence could be even higher, perhaps 11 percent to 15 percent. Certain groups - including Hispanic, Caribbean and African-American populations - appear more likely to have it.
Many women may not even realize that they suffer from the condition until they find their way to an informed physician. When she was a teenager, Kristen Barber-Whiting had irregular periods, so her doctor placed her on the pill. Until she decided to go off the pill, Barber-Whiting thought little more of her adolescent troubles.
Then a few months before she got married, she stopped taking the pill. Even though she was vigorously dieting in preparation for her wedding, the pounds crept on her slender frame.
“I did Weight Watchers. I did Atkins. I did everything,” the Cooper City resident recalls. “I never ate breakfast. I never snacked.”
Nothing seemed to make a difference.
The elementary school teacher began to feel she was not herself. She noticed hair on her body where it never had grown before, and her emotions swirled in tsunami proportions. Neither her obstetrician nor her general practitioner could pinpoint what plagued her.
Then she was referred to Gelman, and a few weeks ago, Barber-Whiting learned she had become pregnant.
“Once I had the diagnosis, I felt so much better. For the first time, I had support from a doctor,” Barber-Whiting says. “I look back and think how many years I lost.”
A few years ago, Christine DeZarn of Denver had an even more frustrating experience. She had been seeing doctors for several years for infertility, but none mentioned PCOS to her. She first learned of it through an online chat site.
Armed with the information, she found her way to a doctor who diagnosed and treated her. Although she still has not been able to conceive, she lost 90 pounds and founded a group to inform others in her shoes, hoping that they in turn will educate their doctors.
Forming the group created “a resource to provide information,” says DeZarn, now CEO of the Portland, Ore.-based Polycystic Ovarian Syndrome Association. “We’ve created patient demand for treatment, and by doing that we’ve facilitated physician education.”
Evelyn Merced-Ramos, 35, of Miami, went through multiple fertility treatments and saw numerous doctors before she, too, learned about PCOS on the Web. When she first clicked on the information, she was shocked.
“I had every single symptom that could possibly be had,” she said. Though she has undergone the same treatment as Barber-Whiting and Acevedo, she has not conceived. (She has a 12-year-old son, whose birth preceded the onset of her symptoms.) And she continues to suffer from painful cysts. But now at least she has hope.
Doctors believe it may be critical to catch this disorder before it progresses into a full-blown disease. Estimates suggest that 3 or 4 in 10 women who have PCOS will by age 40 develop diabetes, and its increased risk of high blood pressure and heart disease.
PEACE OF MIND
But for women who suffer from the condition, peace of mind can come with just learning that they are not alone. Acevedo now serves as vice president of the South Florida chapter of the PCOS Association.
At a recent PCOS Association gathering, Acevedo, Merced-Ramos, and Barber-Whiting listened intently as each woman shared her story. They nodded knowingly at the tales of sudden weight gain that nothing seemed to counteract. They rolled their eyes at doctors who pooh-pooh their symptoms. And they smiled warmly when Barber-Whiting, 27, shared the news of her pregnancy.
Like Acevedo, she had shelved hopes that this would ever happen. Like Acevedo, she performed multiple pregnancy tests before she believed it. It took five positive tests - and her husband’s refusal to buy another one - for Barber-Whiting to accept that at least for now, she had conquered PCOS.
Revision date: June 22, 2011
Last revised: by Tatiana Kuznetsova, D.M.D.