PCOS is not a death sentence. You can still live well if you learn how to manage it, says Deena Marzuki, 32.
Deena, the president and co-founder of My PCOS I Love You, was diagnosed with polycystic ovary syndrome (PCOS) when she was 17.
“When I was diagnosed 15 years ago, I didn’t realise what it was. Even when the doctor explained it to me, it still didn’t sink in,” she recalls.
The most staggering memory she had that day was being told that she would be infertile for the rest of her life.
Initially, Deena blamed herself and her body for not functioning the way it was supposed to.
“I’ve always battled with weight gain, fatigue, pain, hair loss, and irregular periods,” she says.
“When I was younger and didn’t quite understand my condition, it made me feel as if my body had failed me. I often compared myself to other women who were thriving and it was difficult for me,” she adds.
Severe drug addiction
“I had a history of body shaming and was addicted to crystal meth from the age of 16 to 22,” she reveals.
But Deena managed to overcome her addiction and quit cold turkey through her then boyfriend’s ultimatum.
“Miraculously, I recovered, and my only treatment was my mum being there for me because I was in a vegetative state once I came off the drugs. I couldn’t even brush my own teeth, and my mum literally brushed my teeth, showered me, and fed me when I was at home for about a year,” she shares.
Although Deena recovered well from her addiction, her PCOS became worse.
“My hormones were really out of whack. When I was on drugs, I was underweight at 49kg, but once off it, I gained weight and became 130kg,” she reveals.
Deena tried everything in her power to lose weight.
“After my PCOS flared up, I had to find a way to manage my weight, and I saw numerous doctors (gynecologists), alternative medicine practitioners such as acupuncturists, hypnotherapists, and naturopathic doctors.
“I tried every type of fitness workout, took classes, and I even competed in CrossFit because I was so eager to lose weight,” she says.
Acceptance and positive action
“My acceptance of my PCOS came in different stages through the years, but I only truly accepted it and took positive action towards my health when I had my miscarriage in Aug 2020,” says Deena.
“I didn’t blame anyone because I felt that the miscarriage happened because my body wasn’t ready,” she says.
Before her miscarriage, Deena had researched and studied a bit about PCOS to improve her quality of life and get rid of symptoms like bloating, fatigue, migraine, headaches, constipation, occasional joint pain, and hair loss.
“After the miscarriage, I purposed to research and study more about PCOS, and do something more about it,” she says.
Today, Deena is a healthy 71kg and she attributes this to a lifestyle change and management.
“Throughout my years, I’ve always searched for natural solutions to PCOS. There are many women out there who aren’t aware that the symptoms that they have – bloating, weight gain, fatigue, joint pain, headaches, excessive facial hair – are caused by PCOS and hormonal related. There isn’t much information about it, because PCOS and hormonal imbalance isn’t something that people talk much about,” says Deena.
“I’m hoping that the campaign will create awareness and educate other PCOS survivors to realise that what they have is PCOS and with that knowledge, they can do something about it,” she says.
Deena reveals that she decided to call the campaign “My PCOS I Love You” because “one can only do things for their body when they start loving themselves”.
“Women need to understand and love their bodies and their condition before they’re able to tackle each of the symptoms one by one,” she says.
Myths and misconceptions
My PCOS I Love You was conceptualised last year when Deena met her co-founders and fellow-PCOS survivors Ili Sulaiman and Dr Stephanie Yang through social media.
“All of us are at different stages of understanding our PCOS, so we decided to get together and talk about it as ‘cysters’ and a support system for one other,” she says.
They talked mainly on WhatsApp because it was during the MCO, but those discussions led to the birth of the My PCOS I Love You campaign.
“We want to educate women that it’s not a death sentence if you have a condition like PCOS, because it’s something that can be managed through lifestyle change,” she says.
“More than just creating awareness, we’re educating women about their own bodies. There are women who think their weight gain is because they eat too much, and they blame themselves and go through depression. But it’s really just a matter of their hormones,” she explains.
“And the moment these women fix their hormones, life turns around for them,” she adds.
“It’s possible to manage your PCOS and have a better quality of life,” says Deena.
Another misconception is that women with PCOS are infertile.
“Even though I was told at age 17 that I would be infertile, I was still able to conceive and naturally too,” she says. “That’s why I’m so passionate about telling women with PCOS that they’re not necessarily infertile and they can still get pregnant naturally.”
“I’ve reversed most of my symptoms now,” says Deena. “My periods are regular, my moods are better. I don’t have the fatigue and bloating (unless I eat gluten foods which are basically bread and pastry),” she says.
Family support
A vital part Deena’s successful journey through PCOS is the support of her husband, Reza Ramli, 37.
Not only has Reza been Deena’s rock through her years of PCOS, but he is also the creative and brand director of My PCOS I Love You.
“My motto is ‘Her PCOS is My PCOS’ because I love her,” says Reza in support of his wife.
“To all men, I urge you to be the rock to your wife, girlfriend or friend who is trying to get through life with PCOS. It’s so important to ensure they’re not alone in this journey. Together, we can build a PCOS community in Malaysia,” he says.
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