PETALING JAYA: What began as a WhatsApp group among three women suffering from the same reproductive health problem has now turned into an organisation for many others from which to seek comfort.
Spearheaded by president and co-founder Deena Marzuki, “My PCOS I Love You” is gearing up to build communities and act as a one-stop resource centre for women who suffer from polycystic ovarian syndrome (PCOS).
The organisation will be officially launched next month in conjunction with PCOS Awareness Month. PCOS is a hormonal disorder usually found among women of reproductive age. It manifests in irregular menstrual cycle or an excess of male hormones.
Deena said the idea of connecting women with PCOS began in August last year when Ili Sulaiman, who is now the organisation’s ambassador, suggested that she connect with Dr Stephanie Yang, the group’s adviser, which gave birth to their WhatsApp group.
However, Deena’s journey to My PCOS I Love You began 15 years ago, when she was in her teens.
“My figure was considered unacceptable by Asian standards. I was five-foot-eight with broad shoulders and to top that off, I was chubby. I engaged in all types of sport but I was never as fit as the other girls,” she told theSun.
Her struggle with her weight problem led to a seven-year spell of drug abuse, severe anxiety and depression.
In 2014, Deena experienced her worst flare-up of PCOS, causing her to gain an excessive amount of weight, tipping the scale at 130kg. That was right after she sobered up.
“I felt lost and confused. My doctors would tell me to lose weight or prescribe birth control pills and metformin (a diabetic medication). It didn’t help that the fitness trainers felt that I wasn’t working hard enough,” she said.
“Other women just don’t understand what it means to have abnormal period cycles.”
Deena said there was still little awareness of this condition and even less information about it in Bahasa Malaysia.
She said many were unaware that the condition can be managed and even reversed.
“More often than not, doctors would recommend fertility treatment without a proper assessment. However, PCOS is a complex disorder and individualistic in nature. My worry is that if healthcare professionals can misdiagnose someone, what does that tell us about the general population,” she said.
Deena added that for over a decade, she depended on the internet for information on PCOS.
“I’m not saying there aren’t any good doctors, only that sufferers need to be made aware of who they are,” she said. She hopes to achieve this through My PCOS I Love You.
She expects that the organisation will not only dispel the misconceptions but also include men in the conversation.
“This is not just about PCOS. We also want conversations about women’s health,” she added.
Deena said they also hope to educate women, especially those who suffer from PCOS.
“They need to understand what to look out for. We hope to see women gain responsibility for their own health and truly love their own body for all that it is,” she added.
More importantly, she said the three pioneers also hope to help men understand the issue and to speak up on behalf of women.
“My husband is a strong advocate of this cause because he has seen first-hand the real struggle a woman with PCOS goes through daily,” she said.
“I believe that 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. Hence, our organisation’s name,” Deena added.
For more information about PCOS, visit www.mypcosiloveyou.com (coming soon on Sept 1), @mypcosiloveyou on Instagram or join “My PCOS I Love You” and “MY PCOS ILY” support groups via Facebook.
