The Unexpected Heartbreak of Parenting with PCOS

I was diagnosed with Polycystic Ovary Syndrome when I was pregnant with my youngest child. I suspected I’d had it since I was a teen, but doctors were less than willing to discuss it with me after hormone tests revealed that my testosterone levels were not all that high. However, when I met my obstetrician during my eight-week pregnancy exam she walked in the room, looked at me and said, “You have PCOS”. I explained that my hormone tests were fine, and she informed me that PCOS can be diagnosed based on clinical symptoms alone. Finally, an answer to all the symptoms I was having, including why it took 13 months to get pregnant the second time.

Flash forward 11 years and here I am as a mom to two daughters and three stepsons living with PCOS. This has been especially trying with my girls. I feel that I have missed out on so many moments. One of my symptoms is excess facial hair which always made me pull away when my children tried to touch my face as they got older. I have to wear enough makeup to cover it and didn’t want it all over their little hands. There is no leaving the house in a hurry because I have to shower, remove the hair and apply makeup. Any outing requires advanced planning, thus limiting how spontaneous we can be. My girls have always wanted me to grow my hair long like theirs but, after it thinned out in my twenties, I hesitated to do so because the length just causes it to appear thinner. Extremely painful periods and the accompanying migraines sometimes leave me laid up and hiding at home. The weight struggle has also minimized the energy I have to play with my children some days.

The most heartbreaking part, though, is the struggle with infertility. I tried to do the right thing and wait until my youngest was two or three and I could afford to have another child in childcare before we had another. I knew that it had taken a long time to get pregnant with her, but I figured that with enough time we could conceive again. It was a mistake. I should have started trying again right away when my body was still operating somewhat more normally after having her. One of the things she wants most in the world is to be a big sister. She is 10 now. I am 44. I’m afraid that ship may have sailed. And it devastates me if I think about it for too long. My oldest is an amazing big sister and my youngest would have been, too. For years I have been trying to comfort her by telling her that we are trying for another baby. She is finally old enough to understand that there is actually something wrong with my body that won’t allow that to happen. She seems to have come to terms with it, as has my oldest. Then I watch them with other babies and my heart just aches for the dream of one last sibling that I cannot give them. And I blame myself. Could I have done something differently? Did I cause my own PCOS? Answers to this aren’t completely clear after decades of study. It is a daily struggle.

So how do I cope with this? Gratitude and acceptance. I think that is the simplest most all-encompassing answer. I am so very grateful for the two biological children I do have and for the three stepchildren who have blessed my life. I am grateful that I was able to experience two pregnancies. I am grateful that my symptoms are able to be concealed, for a husband who is understanding of my condition and for the wisdom and “I don’t care what people think” attitude that comes with age. I have accepted that my body is the way that it is. I have done the research to understand what I can do to minimize my symptoms. I have come to terms with the fact that another child is likely not in my future and have learned to see the blessings that come with that reality as well; I am able to spend more time with my children and truly focus on the two of them. There is a multitude of things I can now do with older children that I would not be able to do with a baby. I have reached the age where I understand how truly short life is and I refuse to give over more time to my grief and anger about the situation. And when it gets overwhelming, I just repeat my favorite mantra, “right now it’s like this”, and know that it will get better. Then I go home to those beautiful faces and work to make their lives as full as possible, younger sibling or not.