PCOS Diagnosis

I had experienced heavy and painful periods since my first bleed. The pain progressively got worse each period until I was taking strong over the counter analgesics everyday of my period. I was seventeen and crying in a public bathroom on a toilet break at work. The pain was excruciating. I was ripping at my skin, pinching and pulling. Hoping that inflicting some new pain would distract my brain from the war going on inside my uterus. The analgesics has done nothing, I couldn’t get any relief. This only got worse over the next two years. And still, no doctor would listen.

After being told it’s all in your head for years, you do start to think maybe you are imagining it. Nobody would really talk about their periods so I had very little to compare mine to. I knew something was seriously wrong with my reproductive health when I was nineteen. I was on a train and experienced what it felt like if women’s ‘period parts’ operated like a tap. I swear my eyes have never opened so wide in my life as they did when I felt the blood rushing into my underwear. My heart was racing and I had no idea what I was going to do. It was mid month and I was completely unprepared, except for the fact I had black pants on (thank goodness). I got off the train and went to the pharmacy to buy supplies. In the bathroom I was nervous and shaking as I inspected the damage my uterus had created. Watery brown blood had soaked through my underwear and pants. I had no idea what was happening to me.

The next day I went to a new GP and advised him of the event that had occured. He asked a lot of questions and listened to all the symptoms I had experienced over the years. After our discussion he said to me, ‘it sounds like you have PCOS’. Being young, with little medical knowledge I stared at him with a ‘I have no idea what you are talking about’ look. He shortly followed with, ‘that’s polycystic ovarian syndrome’. He then talked about how I didnt fit the criteria of PCOS. I was slim framed with no acne. The only prominent feature I had was excessive hair growth. So did I have it or not?

I was sent for blood tests focusing on hormone imbalances and my very first ultrasound of my ovaries. The ultrasound showed my right ovary was completely covered in small cysts. My left ovary was still covered but not as much as the right. My doctor confirmed the diagnosis of PCOS and told me that the best treatment was to go on the pill. I was to have ultrasounds every 6 months to watch the cysts and rule out any cancerous growths. DING DING DING. Cancer. That’s all I heard. I was at risk of cancer? If that wasn't enough to scare a nineteen year old, his next words definitely were. He then said, ‘and fertility is definitely going to be an issue, you will have a very hard time falling pregnant’.

I was the kid who begged my mum for two baby born dolls because I wanted more than one baby. Having a child has always been very important to me. Being informed at nineteen that I may not be able to have children, the one thing I had always wanted, was terrifying. Feeling that empty weight in my chest was enough to crack me into a million pieces. I held myself back from crying in his office and waited until I was in the comfort and privacy of my room. The years that followed were difficult as I entered relationships. Unsure of how to explain that pregnancy may not be an easy road. Do I tell them upfront before anything serious happens? Do I wait until they ask? I had no idea how to talk about it. When I asked for help at the doctors, I left feeling more confused than I did when I walked in.

Looking back now, I realise my diagnosis of polycystic ovarian syndrome could have been detected years earlier. Unfortunately no doctor would listen to me when I explained my period health to them. I reflect on how far I've come since then. I've learnt to demand better health care and answers to problems. I've found a GP who treats me with respect and has never disregarded my concerns. As far as fertility goes, my surgeon informed me that having a baby wasn't impossible. I had never given up hope but I'll admit that I had lost some along the way. Hearing him say those words restored my loss and reminded me never to listen to just one opinion.

I have ultrasounds every six to twelve months, along with regular hormone blood tests. Monitoring the cysts is very important as well as managing insulin levels. I've had a few large cysts removed surgically, others have resolved themselves. The pill wasn't good for me so I made the decision to go off hormone therapy and manage my symptoms with natural alternatives. This was an agreement my doctor and I came to together. Finding a treatment plan that works for you is essential. PCOS is more common than you think so if any symptoms here are relatable, seek help. A simple hormone blood test and ultrasound can detect cysts on the ovaries.