Finding Positivity When Age, PCOS and Infertility Were Against Me

As told to Jacquelyne Froeber

From April 21 to 27 is National Infertility Awareness Week.

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

This was a surprise. My husband and I were planning not to have children. I also havepolycystic ovary syndrome (PCOS)and I knew that PCOS could cause difficulty getting pregnant.

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

I have always been in tune with my body and listened to what it tries to tell me, good or bad. In 2008, I missed two terms and the warning bells rang. I knew I wasn’t pregnant and immediately made an appointment with 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 had never heard of this common hormonal condition or its health effects, which can include infertility. My OB-GYN gave me a small pamphlet, a prescription for birth control, and told me to follow up with an endocrinologist and come back to her when she wanted to get pregnant. And that was it.

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

My brain was spinning. Sure, that could be true. But what did that have to do with me? Skipping my period didn’t feel right to me. I suddenly felt very alone in a dark room with only a small folded piece of paper as a light for 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 whole thing, so I convinced myself that it was better to listen to the information from the endocrinologist so we could have a conversation.

Unfortunately, before I could even ask about PCOS at my follow-up visit, the endocrinologist told me to lose weight and come back to him in six months. He offered me no further information or even advice on losing weight with PCOS. Also, my insurance didn’t cover visits to a dietitian because he didn’t have diabetes.

With the finger pointed at me, and this time at my weight, I took the blame for a moment. I considered what my healthcare providers wanted from me: lose weight, be grateful for my lack of periods, and take these medications. They didn’t offer much information on how to live well with PCOS.

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

I found little credible information online about PCOS during that time. However, I found the statistic that at least 1 in 10 people born with a uterus have PCOS. The enormity of this information was staggering. If there were so many of us, 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 non-profit organization PCOS Challenge to raise awareness about this condition and the health issues related to PCOS. It wasn’t long before we became a growing community where people and healthcare providers could share information, resources, and personal experiences with this condition. We are driven by things that are important to us, not by what we are told should be important to us. We also became the health policy advocacy platform for PCOS.

Part of our defense has always been the right to fertility care, which is part of health care. I had been fighting for the basic right on behalf of all people with PCOS for the past 10 years, and it was now very important to me personally.

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

During an appointment to evaluate my fertility status, the doctor told me that I had fibroids and needed surgery to remove them. before You might even think about getting pregnant. I felt a pang of panic in my chest. Before getting pregnant?! She was looking at the infertility triangle: age, fibroids, and PCOS. I began to calculate my timeline and strategy for becoming a successful mother.

If I decided to go ahead, after having my fibroids removed, the doctor said that in vitro fertilization (IVF) was my best option and that I had to wait at least six months after fibroid surgery. Plus, based on the chart my doctor showed me, it seemed like my chances of conceiving were in the “needing a miracle” category. All this against the tick… tick… tick. But I didn’t have to think about it much: there was no time! I made the decision to think positively. If you gave positivity, you could get positive results.

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

Sasha and her baby, 2023

Just under a year after starting IVF, I gave birth to a healthy baby girl. She is now 18 months old. Thinking back to when she was trying to get pregnant, it was surreal how everything lined up. Polycystic ovary syndrome, fibroids, and my age were against me. And the success rate of getting pregnant with these factors was low, but I always hoped for the best and surrounded myself with positive energy. It couldn’t have happened without the support of my reproductive endocrinologist and his team, and the support of my family.

Having my little girl has changed my life. To me, she is a symbol of hope for my family and others with PCOS and fertility issues. It is also a daily reminder that everyone should have access to infertility care. Infertility care is medical care.

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