Polycystic ovary syndrome affects one in eight Kiwi women and can cause infertility or lead to serious health issues. But the process of getting a diagnosis often ranges from frustrating to humiliating. Natalia Sutherland reports.
I’d never cried in a doctor’s office before. Yet, here I am in front of my GP all tears and snot. It’s really eating into my 15 minute appointment time, too.
I’ve become a stereotype: a woman in the doctor’s office discussing her period and unbalanced hormones while crying. I’m embarrassed by the sudden, admittedly over-the-top outburst, but I’m struggling to stop the tears or steady my voice to speak.
Tissues on hand, my GP leans towards me with concern, compassion, and an undercurrent of awareness that our session is nearly up, etched on her face. She needs me to ask questions quickly, but my sudden rush of emotion has her changing tack. Knowing we won’t get far in the final minutes of the appointment, she slips me a pamphlet on my new diagnosis.
In a reassuring tone she lets me know that there are plenty of options for women in their 30s with my condition to have children via IVF. It would be difficult at my age, but not impossible. Lots of women with this condition fall pregnant, she says.
I wipe away the tears and blow my nose, take a deep breath to steady my voice.
“I’m not crying because of the possibility of infertility,” I confess to her. “I’m crying because I’m angry that for years I’ve asked doctors what was wrong with me and I was constantly told nothing was wrong. Now, at 34 I’m finally finding out there is.”
Polycystic ovary syndrome, or PCOS, was the diagnosis which had me boiling and blubbing at the GP’s.
Contrary to the name, there are no cysts in the ovaries. Simply put, PCOS means you produce more testosterone and insulin than needed. Generally, women produce an egg from one of their two ovaries every month. But with PCOS, excess hormones stop the release of eggs from an ovary. It doesn’t stop them from being produced though, so the eggs continue to build up in the ovaries. This means ovulation doesn’t take place for some women.
Other symptoms associated with PCOS are irregular or no periods, hair loss or excess hair growth, weight gain, acne, and for some, infertility. PCOS has some risks, one is a higher chance of developing diabetes while the other is a higher risk for certain types of cancers.
It’s common, affecting one in eight Kiwi women, according to the World Health Organisation.
It’s a condition many close to me have. A condition I was told multiple times I didn’t.
“You’re quite vain, aren’t you?” my doctor asked with a little chuckle.
The question hit like a slap to the face. Inflamed skin, stubborn weight gain and crashing tiredness had brought me back to the doctors in my late 20s. Despite multiple treatments for acne and low iron, nothing was working.
“Are your periods regular?”
“Yes.”
“Are they particularly painful?”
“Not really.”
Then, she concluded, I was perfectly healthy and should realise some women have acne for life, that as we get older weight gain is expected and if I’m tired, maybe I should quit my job.
I left her office feeling incredibly embarrassed and with a newly obtained complex about my vanity.
Hearing subtle jibes, condescending tones and useless advice on how to deal with my symptoms was not unusual for me.
“We’re all tired,” was the common mantra when I first went to see doctors as a teenager.
“Other women have it worse,” was another doctor’s response to my concerns about my heavy periods.
Why not try the pill or a different pill if my symptoms were bothering me, she advised.
I was thoroughly defeated. I stopped going to the GP, concluding every health concern I raised would be seen as hypochondria.
It was the persistence of my mum and a friend who kept me searching for answers.
In my mid-30s I found a GP who specialised in gynecological issues. She immediately ordered tests of my hormone levels and arranged an ultrasound.
In New Zealand, you need two out of three PCOS symptoms in order to be diagnosed. One of those being irregular or no periods and the other having high levels of testosterone and insulin.
I never ticked enough boxes. Because I maintained a healthy diet, my insulin levels were always healthy and my periods, though unpredictable, more or less arrived every month. No one investigated further.
It was this GP’s nous, her instinct to test my hormone levels and request an ultrasound, that got me a diagnosis.
The box-ticking system makes it difficult for unusual PCOS cases, like mine, to be diagnosed. Every GP I visited determined whether I was healthy or not by my menstruation cycle. Based on this information alone, they didn’t test my hormone levels. Why would they when I already didn’t meet two of the three diagnostic requirements? It would have been a waste of time and resources on their part.
It could be easy for me to blame GPs for my late diagnosis. Yet, a lack of medical research into women’s health and also, to some extent, my own ignorance about what's normal and what isn't, both played a role in the length of this journey.
I didn’t have the vocabulary or biological insight to recognise, pinpoint or describe telling symptoms. We only know our own lived experience. Too afraid to leave the house at the start of my period, anxious to know where every bathroom would be when I was out – didn’t all women feel that way? Starving, but still fat, wasn’t that my fault for not dieting harder? My symptoms had been with me since puberty, this was a woman’s life, in my mind.
When you hear “other women have it worse” or read about extreme menstrual symptoms, you start to believe your discomfort is normal. That particular sense of normalcy is reinforced by some doctors. Without updated research into gynecological issues, due to underfunding of women’s health, doctors stick to regimented diagnostic lists which perpetuate the cycle.
For some women, late diagnosis will continue to be the norm while scientific research into gynecological issues lag. Until then, there remains no cure for PCOS and its cause is still unknown.
Natalia Sutherland is a Kiwi journalist currently based in London.
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