Most people assume they’ll have kids at some point in their lives. I also used to figure I’d have children eventually, but I don't think I really cared either way. In my mind, I’d have been happy regardless. Then I was diagnosed with PCOS, a hormonal disorder that I later found out would make it really hard for me to get pregnant.
Polycystic ovary syndrome (or PCOS) is actually really common, affecting 10% of women of childbearing age. Symptoms include excess hair on the face and body, difficulty losing weight, irregular periods or no periods at all, and acne. Most women with this endocrine disorder don’t ovulate regularly. They often have cysts on their ovaries, higher levels of male hormones, and insulin resistance.
But because the symptoms are vague and not all women have all the signs, many wnever know they have the disorder until fertility issues bring them to a doctor who knows enough about PCOS to do the right tests and properly diagnose it.
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A surprising PCOS diagnosis
How did I figure it out? Seven years ago, I was 22 years old. I was ending an abusive relationship and dealing with the stress of grad school, when I suddenly realized that I had started gaining weight—and fast. I was normally really thin and my eating habits hadn’t changed at all, but I thought nothing of it until I stopped getting my periods. My cycle had always been irregular, so I assumed they’d come back—but months later, nada.
My mom chalked it up to the stress of all the sudden changes in my life, but we decided to see a gynecologist, just in case. Surprisingly, my doctor realized what it was right away, and several blood tests, ultrasounds, and blood sugar tests all revealed that yes, I indeed had PCOS. Apparently, I’d always had it—as a teen, I remember breaking out more than my friends. But with the stress of my life at the time, it became worse and symptoms developed.
“So… how do we cure it?” I remember asking the doctor, certain she’d have the answer. I’d never heard of the disorder before, but I was sure it could be fixed. “Unfortunately, we can’t cure it,” said my gynecologist. “All we can do is control the symptoms. I’ll put you on birth control and diabetes medicine that will help control your hormones and blood sugar.”
In all honesty, that sounded like a cure to me, and I thought that regulating my hormones through birth control pills would get my period back on track. For a year, I took the pill, waiting for my blood tests to show that I now had regular hormone levels and for my weight to go down. I even started seeing a nutritionist to get me on a healthier diet, since PCOS can be affected by what a woman eats. But nothing changed.
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‘I don’t know if you’ll be able to have children’
By now I was in a new relationship with someone I could see a future with. Even though he loved me regardless of my PCOS, the insecurities I had about myself and my body started to take over our relationship. I quit birth control and hoped that eventually, my periods would come back on their own. They didn’t. I found myself back in my gynecologist’s office, hearing her say 10 awful words: “I don’t know if you’ll be able to have children.”
In that moment, it felt like my world crashed around me. It was strange, because although I loved playing with babies, I had never been hell-bent on having my own. But now that I was in a relationship with someone I hoped to build a future with, I realized that I wanted a baby who was a combination of the two of us—maybe his hazel eyes and my toothy smile? Also, my little sister is my whole world, and the motherly instinct and love I have for her makes me a better person. I’m selfless where she’s concerned, but eventually, she’s going to grow up and start her own family. I suddenly realized I wanted one of my own someday, too.
The next few weeks were an absolute blur. I richocheted from developing an action plan to get my periods back to crying in bed, thinking everything was hopeless. Turns out my heartbreak and back and forth behavior is completely normal for women who deal with fertility worries. “In many cases, women who are told they can’t have children don’t know how to get over the shock,” psychologist Cristina Dorazio, PhD, a New York City–based psychologist and counselor, tells Health. “They can deal with that in different ways, as it’s somewhat of a loss.”
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Coping and hoping
Dealing with it could mean crying nonstop, sinking into depression, or experiencing denial and anger, which Dorazio explains will naturally run their course while women look for solutions that will help them accept their situation (such as egg donation or IVF). I experienced this, but I also coped by deciding to see a holistic health counselor. I wanted my periods to return, which would mean I was ovulating. My PCOS symptoms could be affected by what I ate, so I started a primarily plant-based diet with plenty of vitamin D and foods rich in omega-3s.
Luckily, for me, that approach worked, and I was able to get my periods regularly after 18 months of trying, which I credit to my diet. I also lost weight and had less acne. I tried not to think about the prospect of infertility, even though it was constantly nagging me. I still experienced a constant barrage of breakdowns, a lot of sleepless nights, and a tired, worried brain… but eventually, these symptoms lessened.
It's been about four years since my periods went back to being regular, and because of this, my doctor no longer thinks I'll have trouble getting pregnant when I'm ready to do so. Although I’m no longer with my partner, I’ve realized that a family is something I definitely want one day. I hope I'm able to achieve that. I’ve also realized that the old adage might be true: You never know what you have until it’s gone…or you live with the threat of not having it.
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