Living With PCOS and the Struggle to Become Pregnant

NEWYou can now listen to Fox News articles!

Jennifer Spedaliere had two big goals in life: To be a teacher and to be a mom.

“That’s all I have ever really wanted to be since I was young,” said Spedaliere. “I always told my mom I wanted to be a teacher and a mom. That was it.”

She achieved her first goal without a hitch. Spedaliere, 30, who teaches fifth-graders in New City, N.Y., said she’s been helping and providing for other people’s children for years.

“I really wanted to do the same for mine,” she said.

But there was a problem.

Ten years ago, Spedaliere was diagnosed with polycystic ovarian syndrome (PCOS).

PCOS is a common disorder that affects 1 in 10 women in the United States, according to Dr. Drew Tortoriello, medical director at the Sher Institute for Reproductive Medicine and adjunct associate research scientist at Columbia University in New York City.

PCOS is a hormonal disorder characterized by excessive androgens like testosterone, which makes ovulating difficult. This can lead to difficulty getting pregnant.

“The ovaries attempt to ovulate,” Tortoriello said, “but the process is never completed, so you end up with all these small follicles that never actually ovulate and allow the woman to get pregnant that particular month.”

Other symptoms include weight gain, acne and highly irregular menstrual cycles. In an ultrasound, the ovaries will usually appear enlarged and riddled with many tiny cysts.

Spedaliere suffered from acne and weight gain in high school. She also had highly irregular periods, when she even got them at all, and bad cramping.

“It really is a silent epidemic,” Tortoriello said. “About 10 percent of all women in reproductive age range will have it. So it’s actually the most common hormonal disorder in women.”

Even though PCOS is common, it is not highly publicized. For women like Spedaliere, getting diagnosed with PCOS can lead to confusion and frustration.

She was particularly worried when she met her husband, Steven, and they began making plans to start a family.

“We didn’t want to wait too long,” Spedaliere said. “We knew we wanted a big family. In the back of my head I kept thinking what those doctors had told me. I told Stephen, and he was like, ‘What do you mean?’”

Before this, Stephen Spedaliere had never heard of PCOS. He knew his wife had irregular periods in college, but finally he began to grasp that there could be more serious ramifications.

“We talked about wanting to have a very big family,” he said, “It just entered into my mind, this could be something that could impede us from having that.”

Many of the women with PCOS also have problems with their cholesterol levels and are more prone to high blood pressure. Down the road, this can all lead to an increased risk for cardiovascular disease.

While doctors have not yet discovered the main cause of the disorder, they do know that weight gain and insulin resistance (problems with managing glucose and insulin levels in the bloodstream) tend to foster the disorder. In turn, PCOS can foster weight gain and insulin resistance.

The earlier a patient is diagnosed, the earlier her doctor can interrupt the cycle. Usually this help involves a drug like Metformin, which sensitizes the body to insulin, and birth control pills to regulate the woman’s period. Doctors also recommend losing weight to help reverse some of the adverse effects of PCOS.

Spedaliere was prescribed a specific cocktail of medications tailored to her, a “trial and error” process, as Tortoriello described it, and then began IVF treatments.

Time for Change

Spedaliere and her husband, who live in Westchester County, N.Y.,  found Tortoriello at the end of a long road. They had first sought out the help of a fertility clinic help three years ago, at the recommendation of Jennifer’s gynecologist, but even after numerous rounds of testing, medicine and shots – nothing seemed to work. She still was not pregnant.

“It was heartbreaking, every month,” Spedaliere said, “You don't mind at all when you're getting up and doing it if you had good results, but for those three years, we didn't have good results.”

Her husband agreed. “It was frustrating in two aspects,” he said. “The first aspect was seeing how frustrated it would make my wife because nothing ever seemed to work, and the second aspect was frustration for myself because I wanted to have kids, too.”

The Spedalieres were reluctant to switch clinics because of the months of testing it would entail. They didn’t want to go through it all again with another doctor. If they just stuck it out, Spedaliere thought, everything would eventually work out. Then she got some advice from a co-worker.

“One of my friends at work, we were sitting there talking, and she's like, 'You would never say that to a parent in your classroom. If something wasn't working, to just keep sticking it out. You need to switch.' ”

Someone else recommended that Spedaliere visit the website, and that was how she found Tortoriello at the Sher Institute. She sent him an e-mail and he responded the following day. She and her husband scheduled an appointment with him within the week.

For the first time since Jennifer had been diagnosed with PCOS, she finally had someone to sit her down and explain to her what was going on.

“I felt better because you have new hope in something,” Spedaliere said, “and Dr. Tortoriello just seemed so smart in PCOS and in infertility. I felt like we both left the office that day feeling a breath of fresh air.”

Spedaliere was started on a new round of medications, and she got pregnant with twins on the first try with IVF.

“Immediately, you feel this love for your husband, love for the babies, love for the doctor,” Spedaliere said of being told she was pregnant. “One of his receptionists was in there, she was crying with us. It was just the most amazing moment until they were born.”

Jackson and Abigail Spedaliere were born on April 6, 2010. PCOS is still a worry for their mother – Spedaliere wants to make sure now that she stays healthy for her babies – but the painful memories of infertility, testing and medications are long past.

“Every heartbreak, every shot, every tear shed … I would do it again in a heartbeat,” Spedaliere said. “No doubt about it. It's wonderful. Even when they're screaming their heads off, and they're driving me crazy.”