Polycystic ovarian syndrome (aka PCOS), is a hormonal disorder typically characterized by irregular, painful periods, higher-than-average androgens, and ovarian cysts.
Five to ten percent of women in reproductive age have PCOS, but fewer recognize it because the symptoms can look different for everyone, according to Jeanette R. Tomasino MS, RNC, MNN, Director of Clinical Education and Quality at Progyny. PCOS patients sometimes have hair on the face, chest, or abdomen, oily skin, high BMIs, or insulin resistance that can lead to type 2 diabetes. And since many women with PCOS ovulate irregularly or not at all, one common symptom is infertility.
Jessi Wallace, a contributor to Fertility Authority and blogger for Life Abundant, first found out she had PCOS when she was trying to get pregnant. After she went off birth control, her period stopped. The first doctor she went to confirmed that she wasn’t ovulating but didn’t think PCOS was the culprit because she wasn’t overweight. (The truth is that only about half of PCOS patients are.) She wasn’t satisfied with the lack of diagnosis, and more red flags went up when the doctor prescribed Clomid, which induces ovulation in about 80 percent of women with PCOS and helps 30-40 percent get pregnant, without scheduling any follicular ultrasounds, which you’re supposed to do. She wanted to understand what was happening in her body and feel supported in her effort to get pregnant.
“I felt like I was just another number to her,” she recalls. She advises other women with PCOS to “go with their instincts when it comes to their doctors and take control of their care and not be afraid to find a different doctor if they feel like they’re being dismissed.”
So, that’s what she did. She sought an opinion from a new doctor, who diagnosed her with PCOS and discussed what that meant for her fertility. This time, she went on Clomid and got periodic ultrasounds. Women usually start exploring other options after six rounds of Clomid without results, but Wallace persevered for seven, and it finally worked.
Some women with PCOS have an increased risk for complications like miscarriage, gestational diabetes, and preeclampsia pregnancy, says Tomasino, and some who have been on Clomid give birth prematurely because it can lead to multiple gestation. But thankfully, Wallace was able to have a normal pregnancy.
That doesn’t mean it was emotionally easy, though. Before she gave birth to her daughter, she was terrified of losing the pregnancy and having to redo the process all over again. “You’re more of a worry wart. You’re already very invested at that point, financially, physically, and emotionally,” she says. “When you have to struggle to get to that point, you’re more nervous because you don’t want to lose it.”
She was also concerned that her daughter could have PCOS and all the complications that can come with it, but since it doesn’t seem to run in her family, she figures she’ll cross that bridge if she gets there.
Wallace’s second attempt at pregnancy hasn’t been as smooth-sailing. She didn’t respond to Clomid or another pill she tried called Femara. After an injection called Follistim was also unsuccessful, she decided to take a “financial and physical break” from trying to conceive. “It was very hard on my body,” she says. The fertility treatments caused weight gain, hot flashes, and constant exhaustion, and the fluctuating hormones led to mood swings. On top of that, her insurance didn’t cover any of the treatments.
“Add on the fact that I deeply desired to be a mother, and now deeply desire to grow my family, it’s an awful feeling,” she says. “When you physically can’t seem to do it and deeply want to, you struggle with how you feel as a woman.”
Though Wallace opted out of it, some women use in vitro fertilization in this situation.
But whatever method they resort to, it is possible for women with PCOS to have kids. In fact, Wallace says struggling to get pregnant with PCOS has made her appreciate motherhood even more. “When you know that’s possibly the only child you can have, you don’t look toward the future like ‘were going to have more kids’—you look at it like ‘I got lucky and this may be it for me,'” she says. “I think I’m more patient as a mother than I would have been had I not gone through that journey.”