I was diagnosed with PCOS when I was about 16 years old. It all started when I started getting my period around 14. From the beginning, I had irregular and painful periods. Unfortunately, my doctor 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 experienced weight gain, excessive facial hair, extreme mood swings, and even depression.
In the mid-90s, there were limited resources to research or connect with others facing similar problems. Fortunately, my school arranged for local sexual health counselors to talk to 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 pretty confusing, and up until that point, I was in pain even when I wasn’t on my period. My doctor gave me a lot of misinformation, including the belief that I would never be able to conceive. I was also advised to start taking birth control pills.
Between the ages of 16 and 18, I started taking the microgynon pill to regulate my periods and relieve the pain. Unfortunately, the pill only seemed to make my problems worse. I experienced fainting spells, headaches and constant weight gain. He felt like everything was out of control. During this time, I was living in a youth hostel in Stonewall and they offered the residents the chance to try acupuncture for free. Having grown up with alternative medicine such as herbs and homeopathy, I decided to give it a shot. My acupuncturist had also dealt with gynecological issues and introduced me to the idea that PCOS could be treated through alternative therapies and dietary adjustments.
Over the course of six months, the acupuncture sessions seemed to regulate my hormones and improve my emotional and mental well-being. However, some physical symptoms remained, so my acupuncturist suggested I also try incorporating Chinese herbs. Personally, the herbs seemed to help me manage my symptoms. I also managed to get pregnant and gave birth to my son in my late 20s.
Throughout this journey, I attempted surgical methods to remove my dermoid cyst. However, I felt that these approaches failed to take into account my holistic experience—the intersection of culture, stress levels, sleep quality, nutrition, and more. For me, complementary therapies considered my whole being, providing a sense of listening that I had never experienced with my doctors or gynecology hospital teams.
I no longer suffer from the symptoms of PCOS. I have regular periods, minimal hair growth and feel like my hormones are more stable – although I am now entering menopause so expect the unexpected.
I know I’m lucky to have found a way to manage my PCOS symptoms, but everyone’s journey is different.
It’s frustrating to know that countless people with PCOS continue to be dismissed and told that their struggles are just commonplace.
Fortunately, the advent of the internet has proven to be an invaluable resource for those struggling with PCOS, like myself. Online forums and shared testimonies have fostered a sense of belonging and solidarity, assuring me that I am not alone in their struggles.
From the forums I was able to get recommendations for books, recipes for foods that support some of the symptoms of PCOS and also hear about different results from experimental treatments. If you can’t find any forums, Instagram and Tiktok can be a good source of information, but always check the credibility of the source and consult your doctor before trying anything new!
My experience has made me passionate about improving sexual and reproductive health and I am proud to be on the Brook Engagement Forum. I believe we must continue to challenge the existing medical framework and am a proud advocate for better understanding, research and support for women’s health.