PCOS and fertility as a young person: The forced ‘maternal’ body
By: Helena Pantsis
At the age of 21, I wake to a sharp pain in my abdomen and the thought: Oh fuck, it’s my appendix.
When I visit the doctor, and she feels the swelling, she tells me I need to go straight to the hospital. Everyone believes my appendix has burst; there is a mild panic, and a severe ache.
Image by: Thomas Ensley
In the emergency room, a doctor sticks an intravenous into my arm, sits me on a chair designed to recline back (but doesn’t), and asks about my symptoms. My body shakes around me, heartbeat at 130. It takes some more hours before they take me for an ultrasound, where, ultimately, they find nothing.
I’m herded to a recovery bed, given a sandwich, and told my appendix looks just fine. The doctor moves to leave.
“Wait,” I call out. “What’s wrong with me then?”
I learnt that the cause of the pain has been lurking for years now, waiting for the right time to grow, or burst, or bump into the space where my guts sit: Polycystic Ovary Syndrome (PCOS). It’s not so uncommon, affecting 1 in 10 people with ovaries once they’ve reached reproductive maturity. People can have it their entire lives, and never even know it.
My doctor delivers this news flippantly, as if it is nothing at all. For some, PCOS can feel like nothing. Unluckily for me, the pain is definitely not nothing. PCOS is commonly linked with a hormonal imbalance, with too many androgens and too much insulin being produced by the ovaries.
It can cause: ruptured cysts, menstrual irregularity, anxiety, depression, hair loss or body hair growth, sleep apnoea, increased risk of diabetes and cardiovascular disease, and potentially, infertility.
The ruptured cyst causes me pain like I have never felt. And the expelled fluids, blending in with my innards, mean the doctors can’t even say for sure what the pain is; medicine is predominantly guesswork. They give me some more sandwiches and send me home from the hospital. I puke that night from the pain – worse than a period, but likely less than childbirth, I joke with my mother.
When I see my GP again, she puts me on stronger birth control to balance my hormones, then she gives me a pamphlet depicting a row of women on the cover, smiling.
I tell my friends about my new PCOS diagnosis, and one says: “My mum had that. She had to have an ovary removed because of it.”
One symptom swirls around like a siren in my mind: infertility.
I both do and do not want children. The idea has been one I’ve never had to make a commitment to; I’m only 21 after all. I don’t even have a partner, nor anything remotely close to financial stability. Am I too young to consider this? Maybe, I don’t know. It doesn’t matter. Given my PCOS, it now seems a biological must.
I grew up as the youngest child of older parents. Fertility struggles aren’t foreign to me – they’ve been bedtime stories told since we could understand them.
My mum has always wanted us to know we were her miracles, my brother and me. She knew with absolute certainty that parenthood is what she wanted. But she was twice the age I am now, a little older than most new mothers, but grown enough to know her mind and her body.
If my body produced sperm, it would be easy enough to freeze the goods and make the choice later, but as it is, there is greater sacrifice – and risk – that comes with egg retrieval, storage, IVF, and pregnancy itself.
I study for a life I don’t even know if I want to live; the opening for motherhood is so fleeting. I spend nights crying, battling a dilemma: either my body or some unbuilt child. And the thing is, I don’t want to harvest my guts for some unknown variable – to excavate my eggs, or have my ovaries lasered and fried from the inside out to potentially have a child someday.
I’ve dealt with debilitating, irregular periods my entire life. Since the PCOS diagnosis, I’ve had cysts rupture in me three separate times, feeling like hell every time. So many risks are increased with the presence of these hormonal abnormalities, so even if I ever got pregnant, miscarriages are three times as likely compared to the unafflicted.
My symptoms are so familiar to my mum, who thinks she might have gone her entire reproductive life undiagnosed.
I lurk on subreddits where people are failing over and over when trying to get pregnant, worried their spotting is a sign of ovarian cancer, and comparing deficiencies, nausea, menstrual cycles and reproductive issues.
I research hysterectomies, pondering whether my exhumation might cure me of the pain, and solve this dilemma. But it seems like nothing will. Besides, I’m too young for doctors to even consider a hysterectomy if that’s what I wanted – the whole world is so eager for people with wombs to carry pregnancies – if that’s what I wanted. If any of this is what I want.
That’s the problem: there are too many decisions to be made, and I haven’t even begun to live my life yet.
Still, I’m not the only one. There are so many people enduring PCOS, plodding along silently, because how long can you speak about something that affects your everyday life?
I’m forced to ask myself: What do I want? I don’t want to have to constantly be in pain, to think years ahead at a time, or to stop living because of what might be. But what I want doesn’t really matter.
In the medical industry, my body is not my own, with both contraceptives and sterilisation procedures guarded so heavily. Every treatment option is designed to maintain my body as one fit for carrying a child, even if, biologically, this isn’t possible, or if it’s something I don’t want.
Parenthood is a choice I’ve yet to make: a choice that should come down to me, no matter my age. But society maintains that the womb is collective property.
There needs to be more freedom of choice, and an open discussion with people like me that puts the person before the potential foetus. Still, as it is, there’s nothing I can do. So I go along, not bothering to think beyond each painful episode at a time, because I don’t have much choice about anything anyway.
Helena Pantsis (she/they) is a writer, student, and artist from Naarm, Australia. A student of creative writing, they have a fond appreciation for the gritty, the dark, and the experimental. Her works have been published in Overland, Island, Going Down Swinging, and Meanjin. More can be found at hlnpnts.com.
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