Living With Polycystic Ovary Syndrome – A Young Woman’s Journey

September was Polycystic Ovary Syndrome awareness (PCOS) month. Unfortunately, for the one-in-ten women affected by this serious genetic, hormone, metabolic, and reproductive disorder their symptoms will still be there long after September ends. 

PCOS can affect women in multiple ways. Symptoms include irregular periods, excess facial and body hair, severe acne, cysts in ovaries, and weight gain. There may be lifelong complications such as obesity, endometrial cancer, type 2 diabetes, cardiovascular disease, or liver disease. On top of these, PCOS is also the leading cause of female infertility. Yet amongst this long list of physical symptoms and complications lies the sometimes forgotten about devastating mental health consequences. The silent symptoms of PCOS; the impact on self esteem and consequently anxiety and depression.

This is Jessica’s story.

The well-worn phrase is that being a young woman in this era presents significant challenges. Even with the supposed greater openness and tolerance in society there exists a pressure to fit certain norms. The superficial imagery of glossy magazines has been replaced with the superficial imagery of Instagram and Tiktok. The filtered and airbrushed representations have distorted bodies into something they are not, setting unreachable standards. For a girl growing up with natural shyness this was tough. For a girl with PCOS this was doubly difficult.

Growing up in a Mediterranean country I was already ‘cursed’ with the dark hair that presents a challenge for all women with the current hairless trend marked as the norm. However, at around age eight I became self conscious that the hair on my arms and legs was more prominent than those I saw around me. In addition,  I was overweight. I guess this was first signs of my PCOS revealing itself. Even at this formative stage I felt different and that feeling grew as I moved towards my teenage years. I stood out in a way that made my shyness more acute. I felt inadequate, like I was being judged or questioned, mostly for the excess hair. 

I felt like a complete alien on Earth. I recall looking at the mirror and thinking that my body was transitioning on its own, changing me into someone I wasn’t and didn’t want to be. That, along with the feeling of being an outcast, is why I empathised with the LGBTQ+ community. At the time this group were pretty much invisible when not being stereotyped in media and TV. About a decade later, with some growth and education on these matters, I discovered what I experienced was pretty similar to gender dysphoria.

At times I was humiliated; I recall an uncle buying me shaving cream whilst other family members joined in on the joke. At the time, I knew something was wrong but I didn’t know what. In a world where hairless, skinny women defined beauty, I found myself with hair in some places women aren’t supposed to have hair. Additionally, being overweight didn’t help my uneasiness. 

If the physical issues led me feel less like a woman, my periods made me further question the validity of my womanhood. My periods were often late, sometimes by months with my anxiety rising as weeks passed. My relief when my period started was tempered by pelvic pain and cramps that were so severe that I felt nauseated and dizzy, as well as the period itself being heavy and prolonged.

School is not easy when you have low esteem but what I was facing triggered my anxiety a lot. I would find it hard to have normal relationships with anyone or to approach people. I was sometimes scared to speak because the attention would have been on me and everybody would have started wondering why I looked like that. I had people tell me in “nice” ways what I could have done to get rid of hair and look ‘prettier’. I guess people have likely thought and said much worse behind my back. 

When I finished school I started not wanting to go out to avoid attention, which triggered depression as well. Hormonal imbalances also mean chemical imbalances, hence anxiety and depression. Around the same time I found a few blogs on the internet describing exactly what I was going through. The advent and spread of the body positivity movement had a huge impact on me. I started accepting my body more, trying to get rid of the negative view of excess hair and a larger dress size that society pinned on me. 

It was the summer of 2017 when I gathered all my courage, listened to my body and asked for help – with little to no encouragement from my support system. The obstetricians and gynaecologists who welcomed me were kind and understanding as they reassured me that this issue is something so many people struggle with. After an ultrasound and blood test I finally had my diagnosis: Polycystic Ovarian Syndrome. I cried tears of sadness and happiness, finally I wasn’t alone. Whilst losing weight plays an important role in managing PCOS, it’s not easy when tests certify you also developed an insulin resistance. I changed my lifestyle and together with medication, such as metformin and birth control, my situation is much better.

It’s been such a journey since that day over three years ago and although it’s a work in progress I am so proud that I had the confidence to ask for help. The changes I have seen have been so positive. Medication has helped me better control my weight, improve my skin and reduce my monthly pain. However, the most positive impact goes unseen. I now stand in front of a mirror and accept who I am. More than that; I like who I am. A major lesson I have learned on my PCOS journey is that even after all the body shaming, once you accept the diagnosis and regain your self esteem, the future feels bright.

Jessica’s story is one young woman’s recollection of her journey and how she adapted to life with PCOS. Many girls and women will identify with Jessica’s struggles. For others, other symptoms may be more acute or they may dismiss milder symptoms as just being part of being a woman. PCOS currently has no cure. For many, the symptoms and longer term affects may be mild. However, PCOS may cause type 2 diabetes, cancer, heart disease or other serious conditions. It may also lead to the feelings of worthlessness that Jessica describes. The story is a reminder that you are not alone and in seeking help, things can improve. The future can be bright.

The following websites provide information and guidance on PCOS:

• https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/
• https://pcoschallenge.org
• https://www.verity-pcos.org.uk
• https://www.pcosaa.org
• https://www.pcos-italia.it

Words by Andrew Butcher, with thanks to Jessica.

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