My Battle With PCOS
I roll over to desperately turn off my blaring morning alarm. Only then do I realise the searing pain across my lower abdomen. As I’m curled in a ball I start to panic as it hits me that Emmanuele is still at work and there is no way I can move. I try to get out of bed and fall to the floor in a heap. As I’m curled up in a ball, I call Emmanuele and try to tell him what’s going on. How could I explain what was going on when I didn’t know myself?
After a panicked phone call to my husband I call 000. I’m told to call back if my situation worsens…. How can it get any worse?! This pain was worse than going through labour without any painkillers, and trust me I’ve been there…. That hour and a half I waited for the ambulance was the longest 90 minutes of my life. Multiple thoughts are running through my head. Is it my endometriosis or maybe it’s the PCOS? Is it the Mirena I had inserted a couple of months ago? All the horror stories surrounding the Mirena were flashing through my head. What if it has ruptured my uterus and I can’t have any more babies?! That thought was destroying me minute after long minute.
After an ambulance trip, a long wait at the hospital, finally seeing a doctor and ultrasounds, I got my answer. My PCOS (Polycystic Ovary Syndrome) had struck again. One of the cysts on my right ovary had haemorrhaged into itself. This is what had caused the intense pain, which later turned into feeling like I had been kicked in the stomach. But before I go any further I feel like I should start at the beginning of this hellish journey.
Who remembers getting that first period? I certainly do…. Picture a 13 year old girl in her first year at high school wearing a summer school dress, that was predominantly white… This is where it all the began, although I may have not known it yet. For the next 3 years I suffered from very inconsistent cycles, with every doctor telling me this was normal. “You’re a dancer”, ‘You’re skinny”, “Things will sort themselves out”. These were the things that I got used to hearing. By the time I was 18 I had been on the pill for a couple of years, (which helped for a little while to regulate and make my cycles a little more predictable). This is where it all went downhill.
I started getting irregular cycles, even whilst on the pill and the spotting got longer and longer each month until I got to the point where I was having a never ending period. I started seeing doctors and specialists again. The cycle of pills felt like groundhog day. The specialist I was seeing then upped the ante to try the Implanon with no luck. The frustration grew and grew to the point that I needed to know why.
Why was this happening? There had to be a reason. Why were the doctors treating the symptoms instead of finding the cause? After countless hours researching on ‘Doctor Google’ I started asking the specialist to find a reason. Could it be PCOS? I couldn’t count on one hand how many doctors brushed me off, all with the same response. “There’s no way you could have PCOS, you’re too skinny”. I was gobsmacked. Surely you can’t base a diagnosis on how skinny I am?! I even had one specialist tell me just to have babies and that would solve all my problems…. Hey mate, I’m 20 and not ready to have babies yet!
The resentment set in and I started to feel like this was just my life, until someone suggested I see a naturopath. I figured what the hell? I’ve tried everything else I might as well give it a go. So I came off every pill and let my body readjust. Readjust to it’s natural state. Once I started seeing my wonderful naturopath I finally felt like I was being heard. She actually listened and cared. It finally helped my body to feel better. I managed to get to a point where I had 10 days a month without any sign of a period. This felt like heaven! It may have not been perfect but it gave me some sort of normalcy to my life and gave me hope.
Through all of this my husband Emmanuele stuck by my side. He was there to comfort me when I was in a crumpled heap from the frustration and he helped me through all of the tough appointments. He supported me through all of my decisions to swap and change doctors and let me work this out in my own way. I will always be grateful for his patience. Which brings me to the next part of my journey: the diagnosis.
It wasn’t until Emmanuele and I started trying for a baby all those years later that I finally got my answers. We had been trying for over a year when we decided to seek medical advice. We were onto our second specialist who finally took me seriously and delved deeper into the cause of our infertility. It was actually this doctor that suggested I was showing signs of PCOS. I nearly cried. It was a mixture of relief, frustration and disappointment. How could it take this long to find someone who gave me an answer and what did this mean for us? After multiple tests and an operation, it was confirmed. I did indeed have PCOS and endometriosis. I couldn’t believe I had been living with this and no one had picked it up until now.
This diagnosis also gave me hope. Hope that we could formulate a plan and hope that this plan would help us to get pregnant. However that story is for another post. If you’ve read this far then thank you! I know that PCOS is very common and each woman’s story is different. I hope that if you're reading this then I have somehow helped you to know that you are not alone in this hell. It can be a very isolating feeling when your body betrays you in ways that seem unnatural and definitely unfair. My story is far from finished as I now deal with all the same symptoms post baby number two but I think I’ll keep the rest of this story for another day.
I’d love to know in the comments below your story and battle with PCOS. How has it affected you and your life journey?