Polycystic Ovary Syndrome (PCOS) is a gynaecological disorder that disrupts a woman’s reproductive health. Those who have it experience debilitating hormonal changes that affect their menstrual cycle, physical appearance, weight, blood sugar, mood and even fertility.
While it may be one of the most common female disorders in Malaysia, PCOS is also one of the hardest to detect and treat. Between misdiagnoses, coping with symptoms, making lifestyle changes, finding the right information, and finding a community, many women with PCOS tend to feel like they are alone in their struggles. This is what local NGO, My PCOS I Love You, aims to correct. By creating a community of women, friends and ‘cysters’ where everyone can share each other’s experience, wisdom and strength.
My PCOS I Love You
Co-founded by three amazing women who have also been diagnosed with the condition, My PCOS I Love You (MPILY) is a resource centre, sharing platform and online community for all the women in Malaysia who are currently living with Polycystic Ovary Syndrome.
The organisation is spearheaded by Deena Marzuki (President), social entrepreneur & life coach, Dr. Stephanie Yang (Advisor), healthcare entrepreneur & women’s health coach, and Ili Sulaiman (Ambassador), food host & entrepreneur.
Together they are making waves in the PCOS community by sharing real, hard-hitting stories from fellow ‘cysters’, posting updates on latest PCOS research and treatment, and offering tried and true suggestions for those afflicted to better manage and cope with the disorder.
They do so through monthly activities and programs. This includes webinars, courses and Q&A sessions that are organised on various social media platforms—by ‘cysters’ for ‘cysters’. But that’s not all. The MPILY team also works furiously behind the scenes to spread awareness on the disorder through media projects, collaborations and other events.
Bringing all the ‘Cysters’ Together
A beloved codename for PCOS sufferers, ‘cysters’ (from poly-CYST-ic ovary syndrome), refers to the found family community of girls, women and mothers who have been diagnosed with the disorder. With over 4000 followers on Instagram, MPILY is slowly bringing all the Malaysian PCOS sufferers together in a welcoming, informative, and inclusive virtual environment. Everyone is free to join and learn together, regardless of their age, ethnicity, etc.
This is just one of the more honest, heart-wrenching and unfiltered ‘Vlog Entries’ of fellow PCOS sufferers—filmed in the traditional documentary style footage. Women sharing stories of their experience with PCOS, from the warning signs to their diagnosis, to the earthshattering aftermath.
With so many kindred spirits under one roof, MPILY also facilitates the exchange and consolidation of information. Everyone is free to share their own tips, resources, recipes, alternative therapies and anything else that will help a fellow ‘cyster’ on their healing journey. MPILY is just one example of what happens when strong women band together to make a positive change in society.
Knowledge is Power
In the words of Ili Sulaiman, food host, celebrity chef and fellow ‘cyster’, knowledge is power. And MPILY definitely lives by this saying, because their platforms are not just for show. Each social media post is meticulously curated to educate, enlighten and disillusion readers on the realities of PCOS. Whether that be through colourful infographics or recorded live sessions with medical professionals and other fellow ‘cysters’.
But their most frequently organised sessions are definitely their Instagram lives where they have raw, heart-to-heart talks about issues, questions and topics that are currently hitting the community. This includes debunking myths, pregnancy attempts, mental health, alternative treatments, dietary changes, diabetes, supplements, and many more.
The group has recently published a directory of experts who have helped fellow PCOS sufferers in their healing journey. This group was not only limited to specialist doctors like endocrinologists and gynaecologists, but also included acupuncturists, preventative medicine and others.
Making Waves Right and Left
MPILY and its co-founders have also made headway in terms of public exposure—gracing the pages of prominent news media like The Sun Daily, New Straits Times, The Star, Tatler and Berita Harian. This expansive media coverage has helped propel their message and their mission to the masses. Spreading awareness and giving hope to those suffering from PCOS.
They have also managed to widen their reach by collaborating with various celebrities, influencers, and industry experts to increase their visibility and credibility. The good work they do is slowly rippling out across the country, bringing positive change in spaces that matter.
Calling out to Fellow ‘Cysters’: You Are Not Alone
If you’re reading this and you’re someone who was recently or have long since been diagnosed with PCOS, you’re not alone. There is an entire community of women out there who are in the same boat as you. All you need to do is reach out. My PCOS I Love You is Malaysia’s Trusted One-Stop Resource Centre for PCOS. A place of knowledge, hope and cyst-erhood.
Disclaimer: The information provided in this article is for informational purposes only and should not be considered as medical advice from Motherhood. For any health-related concerns, it is advisable to consult with a qualified healthcare professional or medical practitioner.
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