Grade nine was rough. At 15, I used too many million-dollar words, always had my nose in a book and couldn’t help but put my hand up in class. A lot. I was also slightly heavier than my friends—and I had terrible, painful acne and sparse but dark facial hair on my jaw line.
My dermatologist suggested the birth control pill to help balance my hormones. I didn’t have anything close to a regular cycle either, and the doctor assured me that the pill would make my periods more consistent. I didn’t see a downside. I was looking for anything to make my teenage years more bearable, and I didn’t think to ask for the reason, other than puberty and maybe my Italian lineage, behind my unfortunate symptoms.
It wasn’t until five years later that the alarm bells sounded. I’d gone off the pill to give my body a break and my period never returned. After nine months without menstruating, I sought the opinion of the on-campus doctor at my university, who took my history and suggested I might have a condition called polycystic ovarian syndrome (PCOS).
What is PCOS?
I’d never heard of PCOS before. The doctor explained that it’s very common (affecting five to 10 percent of women aged 18 to 44), and that it boiled down to an abnormal level of androgens, or male hormones, coupled with abnormal levels of luteinizing hormone (LH, which stimulates ovulation). The imbalance of these hormones interferes with the normal function of the ovaries, delaying or ceasing ovulation and leading to oligomenorrhea (infrequent periods, less than eight per year) or amenorrhea (no periods).
The ova (eggs) never develop to a size where they can be released from the ovary, as the hormones required to release them don’t surge naturally. PCOS can also lead to heart disease, high blood pressure and insulin resistance, when the body doesn’t create enough insulin and stores too much glucose, which can result in pre-diabetes or type 2 diabetes. The cause is a mystery, and the severity of the disorder is a sliding scale. The doctor I saw suggested I go back on the pill. I nodded politely, accepted my prescription and went back to my dorm room to Google.
PCOS and pregnancy
While I was slightly concerned when my research showed that women with PCOS may have difficulty conceiving, I was 20 years old and not thinking about starting a family. But then, seemingly overnight, I was 28 and newly married and it started to become an issue. Knowing it was probably fruitless to try naturally, given that I had no idea when I would ovulate, I visited a fertility clinic in Toronto to learn my options.
I was lucky: My first line of treatment, Clomid—a drug used to induce ovulation—and cycle monitoring worked within three months, and I gave birth to a healthy baby girl in 2011. Three years later, with the same treatment, I had my second daughter. Kimberley Garbedian, a doctor at Hannam Fertility Clinic in Toronto, says stories like mine are relatively common, but that it can be quite difficult, too. “Some ovaries respond well to the course of treatment while others—especially in women who are insulin-resistant—are stubborn. It can take some time to get the regimen right.”
This is the case for Jennifer Will of Kitchener, Ont. Her mother insisted she see her family physician when, by 16, she still hadn’t had a period. Now 36, Will has been trying to conceive for two years. She’s been through multiple treatment options, including Clomid, another orally administered drug called Femara, injectable fertility drugs and intrauterine insemination. She conceived twins late in 2015, but devastatingly miscarried one at nine weeks and the second at fifteen. “I wish I’d known more about PCOS earlier,” Will says. “When I was a teen, the doctors said, ‘You may need help getting pregnant’ and I just figured I’d take a medication to make things easier. I never anticipated this kind of struggle. Now I’m up against PCOS and my age—I wish I’d investigated my options sooner.”
Because of the potential challenge, Garbedian urges women with PCOS to book an appointment with a fertility specialist three months before they expect to try for a baby. “There’s less stress when a couple is in the planning stages. We can do a series of tests to find out the state of a woman’s fertility before they start to try, so they have the full picture. I can also suggest longer-term lifestyle changes and appropriate resources if the appointment isn’t so fraught with emotion.” Weight loss is often prescribed for women with PCOS to get to a set point where the body will ovulate on its own, but Garbedian says it’s difficult to tell someone that when they’ve already been trying for six months or a year. That’s the other part of her PCOS message: “If you know you have this condition, don’t think you have to try on your own before getting help. It will just be frustrating for you and your partner.”
Could you have PCOS?
There are three criteria—known as the Rotterdam criteria, established in 2003—for diagnosing PCOS. “We look for two out of three clinical issues to be diagnosed with the syndrome,” says Beth Taylor, a doctor at Olive Fertility in Vancouver. “Elevated androgen levels, which are often suspected when someone experiences excess hair growth, balding or acne (but it’s confirmed by blood work); irregular or absent menstrual periods; and polycystic ovaries on an ultrasound.” (If you develop a feeling of fullness or heaviness in your abdomen or experience pelvic pain that feels like a dull ache that may radiate to your lower back or thighs, you should check with your doctor as it may be an ovarian cyst.) Many people think that all women with PCOS struggle with their weight, but this isn’t the case. Women with a lower body mass index can have PCOS, too, if they have two of the three diagnostic hallmarks; the difference is they don’t have the same insulin resistance as women with PCOS who are overweight, notes Taylor.
For Will, PCOS is just a part of her story and she doesn’t intend for it to be the end of her dream for a family. “I know we’ll get there,” she says. “I’m so sad about our recent losses, but it wasn’t our only chance.” Garbedian says that just because a woman is diagnosed with PCOS doesn’t mean she can’t still get pregnant, with a little help from fertility treatments. “They usually have lots of potential in their ovaries, as long as there aren’t any other issues, but we have to figure out how to release it in each woman, and that takes time and patience.” Taylor agrees: “It’s not a cookie-cutter solution for each woman with PCOS, and we just have to find the right treatment.” All of this gives Will hope. “That’s all the more reason for us to keeping trying,” she says.