Just months before I learned of my PCOS diagnosis, I admitted that I want a child of my own. But now, that may not be possible.
I should have written this essay weeks ago.
I wanted to; I really did. For the last month, words would swirl around my head, forming perfect sentences in perfect sequence of everything I wanted to say.
Yet when it came to putting those words on paper, I would lose my thoughts. Then I would think about the gravity of what I’m about to write, I would just shut down.
I’ll get to it later, I’d lie to myself.
It’s too hard to write about right now, I’d say.
The truth is, though, writing about my polycystic ovary syndrome (PCOS)—and by extension, my fertility—will always come difficult to me, whether it’s today, tomorrow, or five years from now. Because how do you write about uncertainty? How do you write about pain?
How do you write about loss?
I haven’t been the same since October 18, 2013.
It was a sunny, crisp day. My sister and I were attending a conference when my gynecologist called me with the news that I have PCOS. I went outside, walking around aimlessly as she asked me more about my medical history. At one point, I looked at my reflection in one of the building’s windows. I wasn’t really sure what I was looking at, though.
Eventually I sat down on a bench, sinking into myself. I remember putting my hand over my mouth to stifle my crying. I’m sure my gynecologist could her the sadness in my voice, but I tried so very hard to choke it back. When we ended our call, I broke down. For 10 minutes, I wept tears of anger and grief.
I always knew something was wrong with me. Since I was a pre-teen, I had issues with menstruation. I would go anywhere from three to six months, if not more, without getting my period. When it finally would come, it would pour down like a raging river—two pads weren’t enough to keep me from bleeding through.
My mother would tell me I had irregular periods because of stress, whatever that meant. It’s a vague reasoning I would come to parrot and almost accept.
But deep in my gut, I knew my menstrual problems were the cause of something medical. I knew it wasn’t stress causing my irregular periods, my excruciating cramps, or my ovaries to feel every day as if someone is squeezing them until they erupt—like as I write this, or when I awoke this morning, or as I walk down the street. Just pick any minute of the day, really.
It’s not stress causing me pain.
And it took me over a decade to finally get the answer my body already knew: that I am one in possibly five million women affected by PCOS in the United States.
Like many women affected by PCOS, I experience most of the symptoms. My ovaries are covered in multiple cysts—like Jackson Pollack tossed a bucket of tiny fluid-filled sacs and called it a masterpiece. I have infrequent and irregular periods, which I am taking birth control pills to treat. I have a minor case of hirsutism and dandruff, and I am overweight. Skin tags appear around my neck, but not many. I also have trouble breathing during sleep, which could be a case of sleep apnea, but I don’t have the insurance coverage to investigate this possibility. And I have major depression.
Then there’s the issue of fertility.
Just months before I learned of my PCOS diagnosis, I admitted that I want a child. I finally confessed to myself that I want to go through the motions of trying, of pregnancy, of birth, of being a parent. I finally said aloud that I want to be a mother, to raise and teach and love a tiny version of my fiancé and me.
I admitted that I want that belly. I want to send my fiancé to the store at 4am when I have a craving. I want to feel contractions. I want to feel the release of pushing out my baby, and the bliss of holding him or her right after.
But, due to problems with ovulation caused by PCOS, my journey to motherhood will be long and difficult. Or it may never come—PCOS is the most common cause of female infertility.
And the weight of knowing I may never be a mother in the way I want to be has caused my depressive episodes to become more intense and more frequent. I walk around with a lingering sadness because that hope of how and when we would have a child was crushed.
There’s still a lot I don’t know about the severity of my PCOS, or the reality of my fertility.
After meeting with my gynecologist post-phone call, we came up with a plan. I was to visit a reproductive endocrinologist to check my cholesterol and glucose, and possibly go on medication to manage both, as PCOS can cause further health problems in these areas. But, because I’m underinsured, the expensive out-of-pocket costs has kept me from proceeding.
As for having a child, there’s so much uncertainty and sadness—for me and my fiancé. Since we plan to become parents together, having PCOS means becoming a father is as arduous for him as becoming a mother is for me. But he is being incredibly supportive about this roadblock, and is willing to push through it with me. It’s a journey we’ll take together, he says, no matter how long, no matter how painful.
And it will be painful. At my gynecologist’s suggestion, if we want to try naturally—which we do—I will have to stop using birth control and see if my period comes regularly on its own. If it does, that means I am mostly likely ovulating near normally. If it doesn’t, it means I would take birth control once more, and after a while, see if I am regular on my own once more.
A cycle of “wait and see.”
Of course, there are also fertility treatments, she said. Moreover, I could have the cysts removed through surgery.
There are many roads my fiancé and I can take.
But, right now, I don’t want to be reminded of those roads. I don’t want to hear, as I so often do when trying to talk about this, that “fertility treatments have come a long way” or “it’s just not your time yet. You’ll get pregnant when it’s your time.” I don’t want to hear dismissive statements guised as supposed soothing responses.
What I want is to sit in my grief, to accept what PCOS means, and that I have to change my daily routine in order to treat it. I want to bathe in the relief—and misery—of finally having an answer. I want people to understand that I’m upset, that I’m disappointed.
That I’m scared I may be infertile.
I may be infertile.
Because, right now, that’s a truth I am struggling to live.