“It’s called the triangle.” The doctor said to me at her clinic in West London. “If you have at least three of the many symptoms, we diagnose you with PCOS. Here’s what you need to do.”
In March of 2014 at 17 years old, I moved from my small town on the East Coast of Australia to the big smoke, London, England. I remember I arrived just as the sun had started to rear its head again and everything felt fresh and new and full of life and possibilities. It was after being in London for three months that I knew something was different about my body.
This is a long journey that starts all the way back in 2011. I was first put on the contraceptive pill at 15 years old when my periods were so horrific that they meant I was missing school; spending a day or two in bed every month sweating and vomiting from the pain. After a couple of years of being on these hormones and considering my boyfriend at the time and I were doing long distance, I decided to give my body a break and see what my natural cycle was like.
That’s when the symptoms slowly crept up on me: a few dark hairs grew on my upper lip, angry, red acne began decorating my jawline, and I also wasn’t getting my period. I explained these symptoms to the doctor and without hesitation; she diagnosed me with Polycystic Ovarian Syndrome.
Polycystic Ovarian Syndrome [PCOS] is a chronic hormonal disorder that affects between 12-18% of women of reproductive age. Considering how common it is, little is actually known about how it develops.
Polycystic Ovarian Syndrome [PCOS] is a chronic hormonal disorder that affects between 12-18% of women of reproductive age. Considering how common it is, little is actually known about how it develops, whether it’s genetic or not, or if it’s related to lifestyle choices. The term polycystic suggests that you have multiple sacks of fluid surrounding the follicles of your eggs in your ovaries. This is a reason that the condition can cause infertility but you can also have the syndrome with little to no cysts.
Each case is different, and you may have all of the symptoms or only some including weight gain, acne, hirsutism (the growth of typically male-patterned hair growth, i.e. face, chest, stomach), women with this condition are also more prone to Type 2 Diabetes and anxiety and depression.
2015 was the worst year for me regarding my PCOS. I’d returned to Australia, moved to Melbourne and was waitressing full-time. I was happy to be back in the country I’d grown up in and started to settle into a new chapter; however, my PCOS felt like a monster that I couldn’t control – ravaging both my body and mind.
I was lucky enough to be born with thick, healthy hair and it’s a feature of mine that I feel help forms my identity. So when I began to feel clumps of it falling out of my head in the shower and see the beginnings of a receding hairline I was utterly devastated. I’d get comments from strangers at work telling me about products that could ‘fix’ my skin, and although they were trying to be helpful, it hurt my confidence even more. What began as a bit of hair on my upper lip morphed into dark hair that sprang up on my chin, neck, and stomach. Although some women choose to own their facial and body hair and reclaim it from the stereotypical standards of femininity pushed on women, I simply didn’t feel like myself and personally chose to spend money and time trying to remove it. My weight began to fluctuate along with my energy levels (PCOS can change the way your body processes sugar and insulin), and I had panic attacks almost weekly.
Every day that I had off work, I was visiting either: an endocrinologist (hormone specialist), a Chinese herbalist, a nutritionist, a laser technician to get rid of my facial hair or my GP. I was put on different drugs: one for my acne that meant I was more sensitive to sunlight and a testosterone suppressor from another specialist who made me sign a handwritten note stating: “I. WILL. NOT. GET. PREGNANT. ON. THIS. DRUG.” Of course, I signed it and had no intentions of having a child, but the thought that it could seriously deform an unborn foetus inside of me made me question the effects it was having on my body.
I was spending hundreds of dollars per month trying to fix myself, wondering if I’d ever be able to have children, feeling completely alone (considering how common it is, none of my friends had it with most never having even heard of the condition before) and feeling like it was overtaking my whole sense of self and being.
Just like endometriosis, more research into the condition needs to be done in the area of women’s health to fully understand the extent of the illness and how to address it. Even when I was visiting my specialist, she still had blank spots on why women develop this condition and how it can be reversed. Unfortunately, due to the symptoms of PCOS and society’s perspective on so-called ‘flaws’, it can leave women and girls with incredibly low self-esteem. With medical technology improving yearly and effects of the contraceptive pill being studied hopefully one day it can be more than “a women’s illness” and get the attention it truly deserves.
This is just one experience out of many and to open up the conversation we need to hear from other women who have gone through the same thing (shout out to Harnaam Kaur, a body-positive activist with PCOS) because if one in ten women have it, there’s probably a girl out there who’s struggling with the diagnosis – a girl who needs support, and guidance. Getting PCOS into mainstream conversations so it’s more widely understood, especially surrounding body positivity, is a start.
I’m still working on clearing my skin up, I’ll probably have to get laser hair removal treatment for the rest of my life and may need some assistance when wanting a child in the future, but I’ve also learned that it is a part of who I am. I’m learning not to freak out when I get a breakout, but I can also appreciate my skin when it’s not painful. I have to watch my lifestyle and the types of food I eat (carbohydrates, alcohol and sugar can all cause inflammation and exacerbate symptoms) but it’s just another reason to eat foods that nourish my body. I’m aware that I have a snail trail on my tummy, but I’ve started to think it’s kind of cute and my partner loves me regardless. I’m not saying it’s been an easy journey, but it’s been my journey, and I’ve almost come out the other side knowing and appreciating my body. Never forget; your chronic illness doesn’t define you, it’s just one part of the multi-faceted person that you are.
When debating whether or not to write about this, I messaged my best friend, as I knew it would be incredibly emotionally labour intensive needing to dig up some of the lowest times in my life. But she reminded me that when I was in the depths of PCOS, trying to wrap my head around the condition and treat myself, all I wanted was to hear from someone else who had gone through what I was in right then and told me that it would get better. So here’s me telling you that it may not ever go away but with a treatment that works for you, it can be controlled, it will get better.
If you’d like to learn more about PCOS, or whether you’re worried you may have symptoms of the condition, discover more ways to help on the NHS’ PCOS-dedicated webpage.