‘It’s Time To Give The Silent Condition Of PCOS A Voice’

PCOS affects between 5% and 18% of women globally and yet there are still too many girls not getting a clear diagnosis until later in life.

PCOS

by Emma Claire Wilson |
Published on

My story isn’t unusual. I’m not special, my experiences are not rare, and I don’t speak about them often; but I should. I should talk about it openly precisely because I am not special.

I was diagnosed with PCOS (Polycystic Ovary Syndrome) as a teen, but I spent years battling to be heard. PCOS affects between 5% and 18% of women globally and yet there are still too many girls not getting a clear diagnosis until later in life. Symptoms are regularly misunderstood and swept under the carpet. It’s time to give this ‘silent condition’ a voice.

Like most women, I started tracking my cycle as a kid, but my notes never looked like that of my friends. Aunty Flo would visit me without warning and hang around far longer than most. While my friends would count their 28-day cycles, I was constantly surprised by her arrival.

Doctors were quick to tell me it was just my body adjusting, everyone’s periods start irregular. It would settle down.

Only it didn't.

By the age of sixteen, the bleeding was heavier, longer, and even more painful. According to my doctor, the only solution was birth control, but a long history of female cancers in my family meant that medical contraception was not advised, and besides which, I was sixteen, single and had no plans to be sexually active. I didn’t want a sticking plaster; I didn’t want pills for pills sake, I wanted to know what was wrong!

I was a teenager, no one listened.

Years went by and I did what most girls do, I adapted. I hid the white summer dresses and light-coloured trousers at the back of my wardrobe while blue jeans and black trousers became my staple! It was only when my anxiety spiralled out of control that I found the courage to go back to the doctor. I sat in front of a female GP and burst into tears.

Seeing my distress, she immediately did a pelvic exam, ultrasound and bloods. The results were not a shock to her, her suspicions confirmed. I had a 'pearl necklace' around my ovaries. A cluster of cysts. PCOS.

As she dug into other areas of my life, everything became clear. The excess hair that plagued my life and the acne I simply couldn't seem to shift… it all made sense, as did the horrendous migraines and crippling anxiety that accompanied the heavy periods.

Although the diagnosis was a shock, I was one of the lucky ones. My symptoms were mild and manageable, but I can’t begin to explain the sadness that came when the doctor explained that the likelihood I would ever carry a child to term was slim. I would be three times more likely to miscarry in early pregnancy if I could conceive at all.

I suffered multiple heart-breaking miscarriages and by the age of twenty-two I was convinced I’d never have a child of my own.

I wish I knew what changed, the doctor simply told me I had found my ‘miracle maker’. At twenty-four, I fell pregnant with my now husband. I didn’t expect the pregnancy to stick, but as we crossed the first trimester threshold, I was more determined than ever to keep my baby safe.

The pregnancy was tough with lengthy hospital stays thanks to severe hyperemesis. I barely had time to process holding my new-born in my arms when the doctors gave me as extra slice of news.

"Pregnancy has regulated your imbalanced hormones, so you have a decision to make. If you want another baby, now might be your only chance."

My second pregnancy proved even harder than the first, yet again I found myself fighting for both our lives. The pregnancy was plagued with problems that resulted in my daughter being born very poorly and premature, but at least we both survived.

There is not a day that goes by when I don't look at my children and know just how lucky I am. They are my mini miracles.

Sometimes we are made to face the very worst storms, so we can appreciate the beautiful rainbows. No truer a statement can be made of my journey to motherhood. As I look at the faces of my now grown teenagers, I know these girls of mine were meant for me. I had to fight against the odds to get them here, but they were always meant to find their way to me.

I battled the fear of cancer, the barriers of PCOS and countless medical complications throughout both pregnancies, clinging onto the tiny threads of all our lives the entire time and it was worth every single moment. My debut novel, This Child of Mine explores the fears far too many mothers-to-be face on a daily basis and feel far too scared to voice out loud. Many mothers survive nine months of pregnancy on hope alone… I know I did. Twice.

This Child of Mine by Emma-Claire Wilson is out 6th July 23

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