September was Polycystic Ovary Syndrome (PCOS) Awareness Month, a time to reflect and educate ourselves on a condition that affects approximately 8-13% of reproductive-aged women and other people with ovaries. Up to 70% of affected people remain undiagnosed worldwide.
Symptoms of PCOS include acne, excessive body hair, and weight gain, and it is the most common cause of irregular periods, as well as a leading cause of infertility.
In fact, many people don’t realize they have PCOS until they are trying to become pregnant, at which point they may wonder if they can become pregnant at all. The short answer to this question is yes, people with PCOS can indeed become pregnant. However, their road to conception may not be easy, and they may face many struggles along the way.
We spoke with two women about their experience with PCOS and pregnancy, to help enrich our own understanding of the illness and to open up discussion on living with PCOS while trying to start a family.
Rocio is a mother in her late 30s who has always had irregular periods. In her teen years she didn’t give the infrequency a second thought. It was a topic that was never addressed in any of her yearly medical check-ups.
When Rocio did some googling in her twenties, PCOS was a frequent subject that would pop up in her searches. Still, it wasn’t until she was married and looking to start a family that she truly considered the importance of having a regular period.
After a year of trying to conceive, Rocio and her husband were referred to an OB-GYN by their family doctor, who did bloodwork and kept an account of Rocio’s history with infrequent periods. After an official diagnosis, she was put on a series of fertility medications and sent on her way. There wasn’t much additional help or advice on coping with PCOS amid her journey to pregnancy.
“There was zero talk on any other paths I should take, which I found a bit shocking,” she says.
Rocio wasn’t surprised at the diagnosis itself, as it confirmed what she had suspected for years. She started with high hopes that the medication would help with her fertility. Unfortunately, those hopes quickly dimmed after facing continuous “failed” attempts to conceive.
“Conceiving almost turns robotic,” Rocio says, a feeling she believes to be common for those who struggle with infertility, because of the tendency to become so fixated on exact dates, etc. This, she adds, can alter the idyllic notion one has about how you will conceive a child.
Rocio can remember the deep sense of guilt she had about this. The difficult emotions didn’t stop when she became pregnant.
“Once I did conceive, it didn’t feel real, and I had daily thoughts that it would be taken away.”
Rocio got through the process with help from her husband, who she describes as her “rock”, someone who went to every appointment and remained by her side through the slew of negative tests. While this outside support system was crucial, Rocio also recognizes the importance of finding inner strength in the face of it all.
“Be aggressive,” she says. “You will be traveling a road that does not have a tremendous amount of research and no set path to success. If your medical team is not providing enough information, go out and get it.”
According to WHO, some symptoms of PCOS can be reduced through lifestyle changes, which may in turn help with conception. Before becoming pregnant, Rocio saw a naturopathic doctor and an acupuncturist, as well as a dietitian for a plan that was specific to her PCOS.
In an article for The Guardian, writer Ali Francis talks about her experience with PCOS, and how the illness takes its toll on mental health.
“Many [people with PCOS] experience adverse mental health outcomes,” she writes. “Recent studies have revealed that people with PCOS are four to seven times more likely to have depression and anxiety, three to six times more likely to have an eating disorder, and 8.47 times more likely to attempt suicide.”
Dealing with this while on a fertility journey, with its many ups and downs, can be debilitating.
Jillian, a 36-year-old mom of two children, understands the struggle.
“The weight of infertility is unbearable,” she says. “I felt so much guilt that I was the one preventing us from having a child. I felt so frustrated with my body for not working the way I felt it should…I didn’t know whether to mentally prepare for a life with or without children. I had no idea what kind of future I could look forward to.”
Jillian had irregular periods throughout her teen years. She would go several months without a period, and then she would typically menstruate for 10-15 days. At the age of 18, when she went through six consecutive months of bleeding, her physician prescribed oral contraceptives to regulate her cycle.
She was diagnosed with PCOS at her university’s health care centre after a pelvic ultrasound. The most stressful part, Jillian says, was knowing that PCOS could interfere with her plans to become pregnant.
Jillian felt an urgency, an anxious anticipation to start trying to conceive. As her doctors explained, she would likely face challenges. Still, she remained hopeful.
Jillian and her partner were moving around a lot during this time, and she didn’t have a family physician. This led to difficulty obtaining a referral to obstetrics so she could start fertility interventions. By the time she would finally get in to see a specialist, they’d be living in a different province.
After settling in Prince Edward Island and seeing an OB-GYN, Jillian was put on progesterone (to induce her period) and letrozole (to induce ovulation). She became pregnant in 2020 after six months on letrozole.
Jillian’s journey was made easier by her consistent practice of opening up to friends and acquaintances about conception challenges.
“Having those connections was so crucial for sharing information…as well as [sharing] the pain, grief, frustration, uncertainty, and anxiety of the situation we were in, and eventually the joy of conceiving: the unique experiences of being pregnant after having experienced infertility.”
Along with tracking everything—your periods, intercourse, changes in your body—Jillian recommends sharing your challenges with friends and others who are open to connecting.
While good medical care is crucial and undeniably a key factor in becoming pregnant with PCOS, finding a community of individuals going through similar experiences is also important, and can fill in the blanks with information and understanding where traditional healthcare sometimes falls short.
Becoming pregnant with PCOS is not an easy journey, and the reality of infertility can be devastating for those going through it. But there is hope, and it starts within. As Rocio says, it’s important to recognize and affirm your emotions, and then to let them galvanize you.
“Cry. Feel your feelings. Get up,” she says.
Stories like these help us not only because they make us feel less alone and more part of a community, but also because they are vital in terms of information sharing. Unfortunately, PCOS is not understood or discussed much as it should be, but that is something that we hope changes. By sharing experiences, and being open to hearing the experiences of others, we can bring more attention to a condition that takes its toll on a significant number of Canadians and people worldwide.