Each Monday we love to share your health stories. This week we are shining the spotlight on PCOS, so here is one brave story of a reader who has had a long journey with PCOS and helps to shine a light on some of the medical prejudices women suffer from.
I first realised I might have PCOS when I was about 16.
I went to an all-girls school, so conversations about menstruation were par for the course; everyone knew exactly when everyone else was on their period, how long their cycle lasted, and their preferred methods for handling the pain.
My friends, mid-cramp, would curse my ‘incredible luck’ as my time of the month seemed to only appear once or twice a year. I attributed this ‘good fortune’ to my training routine, as I was competing internationally in flat-water kayaking, and therefore exercising before and after school most days. I was mildly underweight too, so I assumed this combination of intense exercise and a low-ish BMI had created the perfect situation, where I barely had to even think about periods.
It wasn’t until I realised that the girls I trained with didn’t have the same problem. While running with a friend, I joked about the unexpected blessing of training as much as we did. She stopped, looked at me, and said: “what on earth are you talking about? Of course I get my period every month.”
That evening I furiously googled and came across PCOS. It fitted with my experiences, so I made an appointment with my GP. At the time I was suffering with chronic fatigue syndrome, brought on by glandular fever - something which would effectively end my relationship with sport - so the GP told me that PCOS wasn’t a priority right now, but to discuss it with a doctor in a decade or two, when I wanted to have children.
This was the first time for me that I experienced something so familiar to other women with PCOS and endometriosis: the notion that our health is intrinsically linked with our fertility.
At university, several years later, I eventually managed to persuade my new GP to refer me for an ultrasound. By this time my weight had ballooned and the other delightful symptoms of PCOS were also starting to make an appearance. After a month of nagging, I finally received my official diagnosis, aged 21.
I thought this would be the start of something new; with a diagnosis in-hand, I felt as though the medical world would usher me through a straightforward set of treatment options, and all would be well.
The reality was rather different.
Instead I was fed the same line I’d been given five years earlier: come back when you want to have kids.
My symptoms grew worse, my weight shot up, and I barely saw a period over the next three years. It wasn’t until I moved to Manchester in 2018, now aged 24, where I found the first doctor to actually listen to my symptoms.
I had researched medications and various treatment options, and found metformin. I went to my appointment armed with facts, mentally preparing a speech to convince the GP to prescribe what I needed, and ready for a battle. Instead, I met the most wonderful doctor, who had PCOS herself, who listened to me and suggested I tried metformin, unprompted.
It was the first time I felt a doctor had listened to me properly, and I virtually skipped out of the appointment - thanking the receptionist for such a wonderful experience. The joy was short-lived though.
“Oh! She is brilliant, isn’t she? Such a shame she’s retiring next week.”
I’m on metformin now, and I think it’s made a mild difference, but my symptoms are still present. I’ve asked subsequent doctors for help, but they return to the same attitude I encountered a decade ago: come see me when you want children.
I do want children, albeit not yet.
But my fertility shouldn’t be the sole reason I receive treatment. It’s dehumanising to be seen by medical professionals as little more than a vessel for children, as though my health is tied to my ability (or lack thereof) to procreate.
It speaks to a wider pattern in medicine of women’s pain being dismissed. I also have a slipped disc and a perforated disc, and so far his response to the clicks and tearing sounds in my spine is to suggest I have CBT. It was only after I used private healthcare that the severity of my injuries came to light.
I know that I’m extraordinarily privileged too. Despite my battles with doctors, I’ve been able to turn to private healthcare at times, and have had the time and energy to investigate my options when I needed to. I also know that being white has been a significant advantage, as Black women in particular are routinely ignored and disregarded in a medical context.
We need more funding directed towards research into women’s health (but not like this awful endometriosis study), but fundamentally we need medical practitioners to see us as distinct from our fertility, and worth treating to improve our quality of life, not just our ability to bear children.
Platforms like Inner Woman Wellness are essential in this process - sadly change is only going to happen when we speak up.