Strange how four simple letters can change a life. Yet for many Malaysians, the term “PCOS” (which stands for Polycystic Ovarian Syndrome) remains relatively unknown. Three women and one platform are on a mission to change this.
Founded by Deena Marzuki, Ili Sulaiman and Dr Stephanie Yang, MY PCOS I Love You is a central resource platform launching today, in conjunction with PCOS Awareness Month. Intended as a supportive community for women with this condition, the organisation aims to generate greater awareness about PCOS (a metabolic, endocrine and reproductive disorder that affects hormonal levels for women).
We speak with Deena, President of MY PCOS I Love You, as she shares her personal story and the exciting plans in store for the platform.
We always have to find ways to be “normal”
Could you tell us a bit about your own journey through PCOS?
I’ve struggled with PCOS for 15 years now, and I’ve gone through many stages of PCOS. Since my teenage years, I was never a small girl or a body that was accepted in an Asian community. I was 5ft 8 and I had broad shoulders and to top it off, I was chubby. I played all kinds of sports and still wasn’t half as fit as the other girls who played just occasionally. Unfortunately, I resorted to drug addiction to cope with my weight problem and developed severe anxiety and depression. I did lose the weight that I wanted, but it was my mental health that took a huge hit. That went on for 7 years.
Then came my worst PCOS flare up in 2014, when I gained 130kgs (this was after I sobered up from drugs). Suddenly, I felt lost and confused and when I kept going back to the doctors, they’d just tell me to lose weight, or they’d push birth control pills and metformin (a diabetic medication) at me.
I was alone throughout the journey because at that time, both my mum and sister had regular periods, so no one really understood what I went through. I struggled with erratic mood swings, fatigue, excessive hair growth, migraine, headaches, constipation and weight.
What have been some of the toughest challenges you’ve had to face?
Having to explain to people why I look the way I am became exhausting. Justifying why I have a moustache, or why the hair on my legs are thick, or why my boobs aren’t developed or why I’m so fat, despite being so active. Having to take medical leave from work and having to guarantee my health to bosses. It just doesn’t stop, it keeps going. We always have to find ways to be “normal”.
The worst part about women with PCOS is that we always lack energy. We already feel inadequate because of how much we beat ourselves up. We don’t need others to do it for us.
It is a genetic condition, it’s not our fault
Do you think there is enough of an understanding in Malaysia about this condition?
No, definitely not. How are women supposed to find answers? We seek a medical professional’s help because we feel lost and confused, but often, going there makes us feel like PCOS is our fault. It is a genetic condition, it’s not our fault.
I also find that women don’t get the right information on the Internet, and that could be numerous reasons from language barrier to not knowing what to search – but that’s all about to change!
Inspiration behind MY PCOS I Love You
What inspired you, Ili Sulaiman and Dr. Stephanie Yang to create this platform?
Our hardships with PCOS and how we supported each other throughout the different stages of our cycle. The openness we had towards each other in our little group – that sparked our inspiration to create this platform.
We felt that all women with PCOS needed was to be supported, to be given the right information on where to go, who to meet, what diets to follow. It was also how they could share their stories to be heard. This was what helped us and we want to build the same community and safe space for them as well.
Throughout my journey, my husband has also been there for me. He’s not only My PCOS I Love You’s Creative and Brand Director, but he was our pillar of strength, who has been there with us three women from Day 1. He deserves a shout out as well!
How did the name “MY PCOS, I Love You” come about?
After my family heard me babbling about PCOS endlessly, and how much I love my PCOS, my brother Ryzal Marzuki had eureka moment and said “Why don’t you name the platform: My PCOS I Love You?“. I instantly agreed because it made so much sense to me and the brand.
In order for us to manage our PCOS, we need to love ourselves first, we need to listen to the needs of our body and only then can we start our healing journey.
Plans for the future
Could you give us a sneak peek at what’s coming up?
For our official launch, we have partnered with both local and international organisations and associations to help us in educating women with PCOS. There’s the PCOS Awareness Association (PCOSAA Global), PlusVibes (our mental health platform), Diet Ideas Sdn Bhd (Malaysia’s first mobile dietetics ) and Daily Muscle (a community gym).
Our website will contain content on everything from diagnosis and how to talk to doctors, to the latest research on supplements or methods on how to treat PCOS. We’ve also got a shop that will be selling our merchandise, books and supplements that can help women with PCOS. Of course, everything on the website has been through vigorous filtering to ensure the information is true to a tee.
Starting from 4th September 2021, we’ve got Malaysia’s first PCOS web series titled “Dear PCOS” where we’ll be featuring 16 women in Malaysia, who share their stories about PCOS. It will be a 16 episode series, running from September through December, and each episode will be released weekly. This was done during the MCO, but we were able to capture every bit of these women’s stories and we want them to be heard, and for our audience to know that they are not alone.
In addition, we have a series of Instagram & Facebook Lives planned, with healthcare professionals and influencers such Dr. Lara Briden (author of “Period Repair Manual”), Dr. Neal Rouzier (a pioneer in Bioidentical Hormone Therapy) and Dr. Sharan Kaur (a women’s health specialist), to name a few, as well as workshops, cooking and fitness classes for our Cysters (fellow women with PCOS) to join.
Cyster to Cyster
What advice can you give our readers who are dealing with PCOS themselves?
Please know that PCOS isn’t a death sentence. If you’ve tried to seek professional advice and you feel that you’re not satisfied with their solution, then please get a second or third opinion. You need to understand that not all doctors will give you the same solution, so find one that works for you. If you ever feel alone, know that you have a whole community of women behind your back, cheering you on no matter what stage you’re at. My promise to the Cyster is that, I will always be here for you.
*The contents of this interview have been edited for clarity and brevity.