On the subject of healthcare generally being a shitshow if you have a womb, I would like to share my experience of being diagnosed with polycystic ovaries (PCOS).

Let me start by saying that if periods were something that affected the entire population, we would have way, WAY better solutions for dealing with everything that goes along with them. The crippling abdominal pain, the fatigue that comes with so much blood loss, the sheer inconvenience of having to sort out your undercarriage every few hours to ensure your immediate surroundings don’t resemble that lift scene from The Shining – it’s all accepted as fine because that’s the way it is and has always been. And that’s just the ‘normal’ periods.

For people like me who have PCOS, there’s no such thing as normal. You might not have a period for six months, then, bam! Six weeks of bleeding is your bonus prize! Unsurprisingly, this has all kinds of implications if you want to have children because a regular menstrual cycle makes that much more likely to happen. During my 20s, I was convinced that I didn’t want children, and was oblivious to the fact that I had PCOS because I’d been on hormonal contraceptives of one kind or another since my mid-teens which had masked the symptoms. Don’t get me started on the horror of hormonal contraceptives by the way – another thing we put up with in order to have a semblance of agency over our reproductive system. Again, if everyone had to endure these side effects, we’d be past them by now.

Back to my Big Fat Hairy Syndrome. I’m using that phrase because (aside from an excuse to paraphrase the title of a great film) it’s part of a label I received from my doctor when he diagnosed me with PCOS. Or rather, he gave all the people who had PCOS this moniker, not just me. I remember it well. A few months before, I’d been talked into getting the coil by an evangelical doctor who convinced me it was the answer to all of my problems. I suffer from migraines with crazy visual symptoms and had no idea that this was a red flag for oestrogen. So, I’d unwittingly been putting myself at risk for stroke because I was never asked the right questions at consultations. After an incident where my migraine was so bad that I was admitted into neurology because they suspected a stroke, they eventually joined the dots and took me off the combined pill.

Enter the coil of doom. I’d heard bad things from my mother but the doctor dismissed this out of hand. I assumed that things had advanced since my mum went through what she described as “feeling like I’d been experimented on by Nazis”. Reader, things have not moved on. I can’t speak for everyone, and if you’ve had a good experience then I’m happy for you. Personally though, it was worse than childbirth, and the after-effects were so painful I ended up getting a scan because the doctor refused to believe that their miracle device could be causing issues. The scan showed I had PCOS, which, by the way, was not the cause of the pain – it had just been there all along.

I insisted on the coil’s removal. Lo and behold, the pain vanished and I could finally walk through the corridors at work without clinging to the walls for support. I made an appointment to find out what PCOS was and what it meant for me. The doctor raised an eyebrow as he scanned my notes.

“So, PCOS isn’t a disease,” he said, exhaling, turning to face me and crossing his arms, ready to defend himself from any attempt to question his wisdom. “It’s a syndrome. Do you know what syndrome means?” I started to answer. He carried on talking. “It means it’s not really a thing. It’s just…just that we, and by ‘we’ I mean, medical professionals, noticed the same symptoms in a bunch of women, but we couldn’t explain it. So, they noticed there were all these big fat hairy women, and they all had problems with periods, and they had cysts on their ovaries too, so they thought maybe all these things were linked, and that’s how they came up with the Polycystic Ovaries Syndrome label. Women with PCOS tend to be overweight, and they tend to be too hairy, and they tend to have problematic periods. But there’s no real reason we can identify for it happening, so there’s nothing to be done about it.”

I blinked. “Really,” he continued, “it’s not a problem unless you want to have children. But what I would say is [he turned and squinted at the computer screen to check my age – I was 27 at the time], if you do want kids, you best get cracking.”

So there we have it – my big fat hairy syndrome. Nearly ten years later, I have two children. Conception wasn’t a problem for me but I know people with PCOS who have been to hell and back trying to conceive. I also know people with PCOS who don’t want children but struggle with the very real symptoms of PCOS on a daily basis – symptoms that have nothing to do with conception and everything to do with ruining your ability to enjoy life without it being ruled by the physical and emotional issues that the condition causes.

Some compassion, please, medical professionals – attention paid to the language you use and the attitude you take would go a long way. Instead of couching this ‘syndrome’ in the exhausting, damaging and utterly obsolete semantics that dismiss all things gynaecological as hysterical women’s issues, drag yourself into this century, do your damn research and act like the bloody medical professionals you claim to be.  

By Amy Stone


To read the previous article in this series, click here