Words by: Elyshia Bedwell (she/her)
I remember the day so clearly, it’s something that I think about way too often… Even though the day was over three months ago now I still think about it, about the news that my doctor gave me that day. The weight of the diagnosis of Polycystic Ovarian Syndrome still weighs heavily on me in everyday life. How will it affect my grades at uni? Will it affect my ability to work a 9-5 job? What will my future look like?
What is PCOS?
Polycystic Ovarian Syndrome or PCOS is a chronic illness that affects the hormonal functions of the ovaries of a person who is assigned female at birth (AFAB). The illness is highly complex and involves the body's metabolic, reproductive and physiological systems. PCOS is quickly becoming an urgent public health crisis, confirmed by World Health Organisation stats. It’s estimated that 8%-13% of the world's AFAB population are diagnosed, and a further 70% are undiagnosed. PCOS, as a chronic illness, has no known cure.
The most common symptom is irregular or long periods; these could be periods that occur very irregularly, that are long (more than seven days), or that don’t come at all. Other symptoms are excess hair growth, bad acne, unexplained rapid weight gain, and trouble losing weight. PCOS also causes hormone imbalances. All this affects the body's metabolic functions, meaning that a person with PCOS is not able to break down nutrients that are needed to help build and repair the body. These symptoms can have major effects on a person’s mental health, leaving sufferers feeling helpless.
Where my journey all started…
Unfortunately for my young self, I was blessed with my first period at nine years old. When I first got it I knew what a period was, but I wasn’t prepared; I was terrified. I now look back and see why I got my period at such a young age, as I was always more physically developed than kids my age. One thing that getting it so young brought me was a very bad body image. For me it was a time of constant worry about how my body looked or if I’d accidentally bleed through my pad with my heavy periods. This then meant that when I had bad periods I would have to miss out on things like school swimming, or PE.
My struggles with the NZ health system
(and finding a doctor who cared enough )
Regardless of whether you have PCOS or not, anyone with a chronic illness will understand how hard it can be to get a diagnosis. I always denied that something was wrong with my periods as I thought having painful long periods was normal. Shock horror they aren’t meant to be either of those things.
During my last year of high school, I started to suspect that I may have either PCOS or Endometriosis. So I booked a doctor's appointment to talk with my GP and see what she thought. When speaking with her she was super supportive and understanding of my concerns, which led to her suggesting I try the dreaded oral combined birth control pill. This was recommended to help regulate the flow of my period and hopefully make it less awful for me.
Fast forward a year to 2023. I moved to Welly for uni, which meant that I had to enrol into a new GP practice. I got a completely new doctor, and hoped this would get me somewhere. Armed with my optimism and shitty periods I talked to my new GP about all my concerns. His reply to my issues was “Just don’t have a period, keep taking the active pills”. After this appointment, I went home feeling pretty defeated. Why would a doctor completely shut down my concerns like it was nothing?! It was from this very evident to me that my new GP had ZERO clue about anything to do with periods.
After this appointment, I then rang up my GP and requested to change doctors to one that my best friend was with as she was experiencing some similar issues to me at the time. Let me tell you the difference between the doctors was like night and day. Upon telling her that I had just noticed that I had gained 25 kgs in the space of six months and that it could not be explained she told me that she’d like to run some tests. Finally, some hope. Now every time I walk out of her office I feel reassured that I am being listened to, taken seriously and being looked after to the highest standard.
My eventual diagnosis
In November last year, my new GP told me that to do the next stage of testing I must come off birth control. After being off the meds for four months she sent me for ultrasounds to help determine what exactly was going on with my uterus and ovaries. As horrible as it was to get them both types of ultrasounds done I knew that it was necessary to help me get answers. After the ultrasounds for the next two weeks before my follow-up appointment, I kept worrying about what could have possibly been found. When the day of the appointment came and my doctor told me “You’ve got PCOS” I felt numb. Finally getting answers was what I had longed for for so many years but also something that I didn’t wanna hear. For the rest of the appointment, I zoned out hoping that I’d be able to go home soon. When I eventually got home the first thing I did was cry my eyes out. It wasn’t what I wanted to hear five days before my 20th birthday. It was meant to be a happy time; instead, I was mourning the loss of my ‘healthy body’.
What happened next
After my diagnosis, I then began to experience several long bleeding periods. Especially the one that went on for 45 days! During this specific bleeding episode, I experienced some bad symptoms like stabbing cramps, dizziness, nausea and constant headaches. When I finally got to see my GP she immediately prescribed me stronger meds to help stop the abnormal bleeding and got the nurse to draw urgent bloods. Turns out I was borderline anemic and because of this I am now stuck taking iron tablets every couple of days as my body doesn’t produce enough to cope.
Coming to terms with having PCOS
Coming to terms with having a chronic illness changed my whole outlook on life, and made me more empathetic towards others. It’s forced me to think about how you never truly know what someone is going through inside. The invisible pains and struggles that they face that others will not recognise.
Lastly, if you are reading this and you have PCOS I want to tell you that your body is amazing. While it may not seem right it has been coping with PCOS in the best way it can, so don’t be angry at your body. Instead, embrace it and take care of it. Your body is where you live, it's your home, don’t judge it. I also want you to know that you are not alone in your struggles. While it may seem hard to find light at the end of the tunnel right now I promise it does get better. Of course, I can’t promise that you won’t have bad days—but you will also start having good days. Listen to your body as you know it best, and always keep fighting!
You are so incredibly strong and brave for doing what you do despite having a chronic illness.
- Much love
Elyshia xx