Positivity Was My Secret Weapon Against PCOS and Infertility

As told to Jacquelyne Froeber

April 21-27 is National Infertility Awareness Week.

When I turned 38 in 2018, my biological clock started ticking. Loudly.

This was a surprise. My husband and I were planning on being child-free. I also have polycystic ovary syndrome (PCOS), and I knew PCOS could cause difficulties getting pregnant.

But that all became background noise. All I heard was: Tick … tick … tick.

I’ve always been in tune with my body and listened to what it’s trying to tell me — good or bad. In 2008, I missed two periods and warning bells went off. I knew I wasn’t pregnant and I immediately made an appointment to see my OB-GYN to see what was going on. After some blood tests and an ultrasound, I was diagnosed with PCOS.

At the time, I’d never heard of the very common hormonal condition or about the health effects, which can include infertility. My OB-GYN handed me a small pamphlet, a prescription for birth control, and told me to follow up with an endocrinologist and come back to see her when I wanted to get pregnant. And that was it.

“But what about my missing periods,” I asked. She said not to worry. “Plenty of women would love to skip their period.”

My brain was reeling. Sure, that could be true. But what did that have to do with me? Skipping my period didn’t feel right. I suddenly felt very alone in a dark room with just a small folded piece of paper as the light into my new diagnosis.

To say the pamphlet's lack of information was disappointing is an understatement. It took me a few minutes to read the entire thing, so I convinced myself it was better to hear the information from the endocrinologist so we could have a conversation.

Unfortunately, before I could even ask about PCOS in my follow-up visit, the endocrinologist told me to lose weight and come back and see him in six months. He didn’t offer me any more information or even tips on losing weight with PCOS. Also, my insurance wouldn’t cover visits to a dietitian because I didn’t have diabetes.

With the finger pointed back at me — and my weight this time — I shouldered the blame for a moment. I considered what my healthcare providers wanted from me: Lose weight, be grateful for missed periods, and take these medications. They didn’t offer much information about living well with PCOS.

But I listened to my body. It told me I didn’t have to wait for the information I deserved. I just had to keep looking.

I found little credible information online about PCOS during that time. I did, however, find the statistic that at least 1 in 10 people born with a uterus have PCOS. The enormity of this information was stunning. If there were so many of us out there, where was the evidence-based information? And if my healthcare team couldn’t help me, who could?

I decided to create a resource for people with PCOS to find help. In 2008, I started the nonprofit PCOS Challenge to raise awareness about the condition and PCOS-related health problems. It wasn’t long before we became a growing community where people and healthcare providers could share information, resources and personal experiences with the condition. We are driven by the things that are important to us, not what we’re told should be important to us. We also became the advocacy platform for health policy for PCOS.

Part of our advocacy has always been the right to fertility care, which is part of healthcare. I’d been fighting for the basic right on behalf of everyone with PCOS for the past 10 years, and now it was so important to me personally.

I assumed that getting pregnant may have taken a little time, but I had no idea how unpredictable my journey to motherhood would be.

During an appointment to assess my fertility status, the doctor told me I had fibroids, and I needed surgery to remove them before I could even think about getting pregnant. I felt a shot of panic through my chest. Before getting pregnant?! I was staring at the triangle of infertility: age, fibroids and PCOS. I started calculating my timeline and strategy for successfully becoming a mother.

If I decided to move forward, after I had the fibroids removed, the doctor said in-vitro fertilization (IVF) was my best option, and I had to wait at least six months after the fibroid surgery. Also, based on the chart my doctor showed me, it looked to me like my chances of conceiving were in the category of “needing a miracle.” All of this against the tick … tick … tick. I didn’t have to think about it for too long though — there wasn’t time! I made a decision to think positively. If I gave positivity, I could get positive results.

I had myomectomy surgery to take out the fibroids. My reproductive endocrinologist and his team echoed positive messages as we started the process of in-vitro fertilization (IVF). Time seemed to slow down, and everything revolved around the next shot and the next doctor’s visit — and a lot of waiting in between. “Think positive,” my doctor said. “Think, good quality eggs. Think, good quality embryos.” After the first round of egg retrieval, a surprise delay because of endometrial polyps and a frozen transfer, I got a positive result. I was pregnant — and it only took one try.

A little less than one year after starting IVF, I gave birth to a healthy baby girl. She’s 18 months old now. Looking back at when I was trying to get pregnant, it was surreal how everything lined up. The PCOS, fibroids and my age were all against me. And the success rate of getting pregnant with these factors was low, but I always hoped for the best, and I surrounded myself with positive energy. It couldn’t have happened without my supportive reproductive endocrinologist and his team, and my supportive family members.

It's been life-changing to have my little girl. For me, she’s a symbol of hope for my family and other people with PCOS and fertility issues. She’s also a daily reminder that everyone should have access to infertility care. Infertility care is healthcare.

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