Polycystic Ovary Syndrome: Scarlett’s story 

I was diagnosed with PCOS when I was about 16 years old. It all started when I began menstruating around the age of 14. From the beginning, I experienced irregular and painful periods. Unfortunately, my GP initially dismissed my concerns, attributing them to the normal adjustment period for girls before their cycles settle down. But my struggles went beyond just irregular periods.

I also dealt with weight gain, excessive facial hair, intense mood swings, and even depression. 

Back in the mid-90s, there were limited resources for me to research or connect with others facing similar issues. Fortunately, my school arranged for local sexual health advisors to speak with us. I decided to seek their guidance and shared my problems with them. As a result, I was able to get a referral for an ultrasound to investigate the underlying causes of my symptoms.  

During the ultrasound, they discovered not only the presence of PCOS but also a dermoid cyst. It was all quite bewildering, and by that point, I was experiencing pain even when I wasn’t on my period. My GP provided me with a lot of misinformation, including the belief that I would never be able to conceive. They also advised me to start taking birth control pills.  

Between the ages of 16 and 18, I began taking the microgynon pill to regulate my periods and alleviate the pain. Unfortunately, the pill only seemed to exacerbate my problems. I experienced fainting spells, headaches, and continued weight gain. It felt like everything was spiralling out of control. During this period, I was living in a Stonewall hostel for young people, and they offered the residents the opportunity to try acupuncture for free. Having grown up with alternative medicine like herbs and homeopathy, I decided to give it a chance. My acupuncturist had also faced gynaecological issues and introduced me to the idea that PCOS could be managed through alternative treatments and dietary adjustments.  

Over the course of six months, the acupuncture sessions seemed to regulate my hormones and improve my emotional and mental wellbeing. However, some physical symptoms persisted, so my acupuncturist suggested I also try incorporating Chinese herbs. Personally, the herbs seemed to help me manage my symptoms. I was also able to get pregnant and gave birth to my son in my late 20s. 

Throughout this journey, I attempted surgical methods for the removal of my dermoid cyst. However, I felt that these approaches failed to consider my holistic experience—the intersection of culture, stress levels, sleep quality, diet, and more. For me, the complementary therapies took into account my entire being, providing a sense of being heard that I had never experienced with my GPs or gynaecological hospital teams.  

I no longer suffer from the symptoms of PCOS. I have regular periods, minimal excess hair growth and I feel my hormones are more stable – although I am now beginning perimenopause so I am expecting the unexpected. 

I’m aware that I am fortunate to have found a way to manage my PCOS symptoms but everyone’s journey is different.

It is disheartening to know that countless people with PCOS continue to be dismissed and told that their struggles are merely commonplace.  

Fortunately, the advent of the internet has proven to be an invaluable resource for those grappling with PCOS, like me. Online forums and shared testimonials have fostered a sense of belonging and solidarity, assuring me that I’m not alone in their struggles. 

From the forums I was able to get recommendations for books, recipes for food that supports some of the symptoms of PCOS and also hear about different outcomes from experimental treatments. If you can’t find any forums then Instagram and Tiktok can be a good source of information, but always check the reliability of the source and consult with your doctor before trying anything new out! 

My experience has made me passionate about improving sexual and reproductive health and I’m proud to be on Brook’s Participation Forum. I believe that we need to continue challenging the existing medical framework and I am a proud advocate for better understanding, research and support for women’s health.