“It’s not cancer or anything serious like that, stop asking questions.”
These were my doctor’s words after diagnosing me with Polycystic Ovarian Syndrome (PCOS), a reproductive problem affecting one in ten women in the UK.
It causes imbalanced hormones, acne, weight gain, excess facial hair, irregular periods and in some cases prevents ovulation.
I’ve lived with PCOS for a decade, but wasn’t familiar with it until my diagnosis at 20, after two years of almost no periods and my symptoms getting worse.
Bringing up the dreaded period conversation felt too embarrassing and when I eventually did, my doctor’s response was unfortunate. He didn’t offer any information on what PCOS was or how to improve symptoms, and I kept thinking, what are the side effects of this syndrome ravaging my ovaries to destruction?
That appointment was humiliating. PCOS isn’t life-threatening, but it felt life-altering, and those words stuck for a long time. So I did exactly what the doctor ordered: no questions, ignore all the symptoms.
It’s devastating when people say, ‘it’s just a period, get on with it’. In principle they’re right, it is just a period, but it’s the effects of the period – or lack thereof – that’s the problem.
It feels like being in the doctor’s office again, being invalidated.
On top of the symptoms mentioned earlier, PCOS can also make conceiving difficult. At 20, children weren’t something I’d given much thought to, but I felt crushed being told it might never happen for me.
I remember phoning my mum after my diagnosis – she inadvertently eased my tension by saying, “don’t worry baby, I’ll be your surrogate”. We both burst out laughing.
Luckily the help I’ve received since changing doctors has been brilliant. I’m blessed to have a beautiful daughter without borrowing Mum’s womb, but it’s doubtful I’ll have any more and I’ve experienced multiple miscarriages.
My cycles are around 80 days, but sometimes stretch even longer, up to 115 days. When this happens my body and mind gradually feel a heaviness that builds in intensity until I have an extremely painful and heavy period lasting between two to 14 days.
By cycle day 45 I’m exhausted, my lower back aches, I’m bloated, emotional, I get migraines, my breasts become increasingly sore and I become more irritable…all arguably normal PMS.
However, this will last and continue to worsen for however long it takes my period to come, so by the time cycle day 80+ arrives, I feel like I’m living in a constant state of period flu. It’s physically and emotionally draining.
I cannot be honest about PCOS and its affects for fear of judgment and being labeled a hypochondriac. Despite how common PCOS is, it’s still taboo to say anything about periods or feeling rubbish because of them, so we just carry on in silence.
Today, September 1, marks the start of PCOS awareness month. We need to talk about these things without stigmatisation now, before more women feel lost, alone or silenced like me at the start of my PCOS journey.