Three Malaysian Women’s Fight against PCOS

In this exclusive interview, three women share with Bernama their deeply personal stories battling polycystic ovary syndrome (PCOS). Through their candid accounts, they hope to educate, inspire, and support others navigating the challenges of PCOS, showcasing the power of solidarity and resilience in the face of adversity.

Photographer: HAFZI MOHAMED

KUALA LUMPUR, August 8 (Bernama) -- The year 2020 will go down in history as the year the world became immobilised by the COVID-19 pandemic. However, for three Malaysian women with polycystic ovary syndrome (PCOS), it was a time of new beginnings.

At the start of it all, Deena Marzuki, Ili Sulaiman and Stephanie Yang were complete strangers. Mutual friends that knew of their struggles helped introduce them to each other and they easily fell into a close friendship.

Determined to make up for the lack of readily available resources and assistance for PCOS in Malaysia, the women also formed the support organisation, My PCOS I Love You, and the non-governmental organisation (NGO), PCOS Support Association KL & Selangor.

PCOS is a disorder where women experience an imbalance in their metabolic and reproductive hormones.

Symptoms vary but can include irregular menstruation, obesity, male-pattern baldness, severe or adult acne and ovarian cysts.

Deena Marzuki

President & Co-Founder

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Deena Marzuki
President & Co-Founder
To say that life with PCOS was hard would be an understatement for Deena Marzuki, 34. Officially diagnosed at age 17, her symptoms were many and some were crippling.

Deena recalls her symptoms emerging earlier at age 13, in the form of bloating, fatigue, and weight gain.

“At the time I didn’t know this could be related to PCOS. When I was growing up, PCOS wasn’t something a lot of people knew or talked about,” she told Bernama.

Her weight kept increasing despite being active in sports. By age 17, her body hair was thick and excessive while her period remained absent. All this finally drove Deena to pay a visit to the OB/GYN (Obstetrician/Gynaecologist), who medically diagnosed her with PCOS.

“The whole consultation felt pretty daunting. The doctor ran a blood test that showed I had high levels of male hormones in my body. They also did an ultrasound that detected some pearl-like strings on my ovaries. I was later told those were cysts.

“After the tests, the doctor explained to me I had PCOS but didn’t go into too much detail about it. I was told that I needed to lose weight and that there was a chance I was infertile which was gutting,” she said.

Overwhelmed and lost with her diagnosis, Deena agreed to the doctor’s prescription of birth control pills to help regulate her period and PCOS symptoms.

She remained on birth control for nearly six months before stopping.

“I did get my period while on it but unfortunately it didn’t help reduce my symptoms. My bloating and weight gain worsened, the hair growth didn’t lessen, and I had migraines daily,” she shared.

The negative perception Deena had of her body impacted her mental health greatly and she fell into a drug addiction that lasted for seven years. During her addiction, the drugs caused a drastic drop in her weight and at her lowest Deena was 49kg. The drugs also exacerbated her PCOS symptoms.

With the addiction taking a toll on her mentally and physically, she quit cold turkey.

“I stopped taking the drugs in 2012. In a matter of months, the weight came back, and it shot up to 110kg. With the rapid weight gain I also developed insulin resistance and my PCOS symptoms worsened.

“My mental health, which wasn’t good to begin with, was badly affected. It was exhausting to deal with everything while also struggling with body dysmorphia, depression, and severe anxiety,” said Deena.

While this was going on, she also had to deal with friends and family that weren’t sympathetic to her condition. Words like “fat”, “lazy” and “weak” were frequently thrown at Deena. Friends who couldn’t handle the changes broke off their friendships and ceased contact.

Deena would spend the following years engaging in trial and error, searching for an effective way to handle her PCOS.      
“I tried a whole plethora of fad diets that didn’t work. I saw a neurologist for my migraines and tried hypnotherapy to combat my sugar cravings. There were also visits to acupuncturists and a wellness doctor.

“I got into CrossFit which helped me lose some weight, but I started to overdo it. I did the workouts twice a day, restricted my daily food intake to 400 calories or I would just puasa (fast). This didn’t work and I gained weight instead. I discovered that this happened because my cortisol levels had risen due to the stress my body was under,” Deena recounted.

After that episode, she decided to pause and hit the reset button.

She devoted more time into researching PCOS. She sought support from international PCOS communities and gathered knowledge on her condition from the experts she met. 

Intensive workouts were replaced with lighter exercises. The food restrictions stopped, and Deena ate whatever she wanted in moderation.

In 2019, she tied the knot with Reza Ramli. Deena credits him as being her “pillar of strength” to this today. His presence helped heal the traumas she had faced throughout her life.

Getting to meet Ili Sulaiman and Stephanie Yang seemed like fate for Deena. They became close friends and their mutual interest in raising awareness on women’s health in Malaysia resulted in the birth of their support organisation, My PCOS I Love You.

With her improved understanding of PCOS, Deena was able to explain things better to her loved ones. Thanks to the information she shared, Deena’s mother was encouraged to meet a doctor and in 2020 was also diagnosed with PCOS.

“My husband, family and close friends have been my biggest supporters in my PCOS journey. They’ve been by my side through thick and thin, especially after my first pregnancy ended in a miscarriage. Alhamdulillah, last year we welcomed our daughter through the IVF route,” she said with a smile.

When asked if she ever thought of a life free of PCOS, Deena was quietly contemplative before giving her answer.

“I still have my low days when it comes to PCOS, but I don’t let it take control of me. There are times I’ve wondered what it would’ve been like to live without the pain of PCOS, but then I remember I wouldn’t be where I’m today without it,” said Deena.

Ili Sulaiman

Ambassador & Co-Founder

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Ili Sulaiman
Ambassador & Co-Founder
Celebrity chef and TV host Ili Sulaiman looked to be unstoppable after she was crowned the winner of Food Asia Hero 2015. Her career on TV was picking up and she had just finished recording her first major TV show, By the Sea with Ili. She had also entered into a partnership that launched the Agak-Agak restaurant, a social enterprise that offered apprenticeship for underprivileged youths.  

Behind the scenes, though, a different story was playing out.   

“I was running myself into the ground juggling so many different projects and it made me physically exhausted and mentally drained.

“I wasn’t eating and sleeping properly and getting only around four hours of sleep while working 16-to-20-hour days. Being so busy meant I also had less time with my family and friends,” said Ili, 37.

It was also then that she realised her period had been absent for two months.

Concerned, Ili went to see her gynaecologist. Her check-up revealed several worrying symptoms.  

In addition to unexplained weight gain and hair loss, an ultrasound scan showed cysts on her ovaries. A blood test showed disturbing results – her insulin levels were high enough to make her prediabetic.  

With this result in hand, her doctor broke the news: Ili had PCOS.  

“I was in shock. I didn’t know what it was and hearing the words “polycystic ovarian syndrome” scared me. I looked it up on the web afterwards and was overwhelmed by the amount of information on it.

“I felt very alone. I knew no one else with PCOS, and that made me feel lonelier,” said Ili of her reaction to her 2018 diagnosis.  

Her doctor gave some advice on how to manage her PCOS. Light exercises like yoga were recommended, her diet needed to change and she was given a three-month dose of metformin to help manage her insulin.

“I was thankful that my doctor was very understanding and straightforward. This is something I always emphasise on when I’m talking to women about PCOS.  

“It’s important for women to find a doctor that they’re comfortable with. Find someone that doesn’t make you feel ashamed and less of yourself,” she said.

Despite her doctor’s advice, Ili put the management of her PCOS on the backburner. Her priority at the time was her business, TV career and other ongoing projects.  

Ili’s schedule had become increasingly hectic and she was already struggling with depression. 

When she openly talked about her depression later on, people were shocked. They were surprised that such a bubbly, loving presence on TV had depression so bad that it left her bed-bound. She even stopped cooking for six months.  

“In the beginning, I blamed myself for the suffering I went through. I felt that I must have done something wrong to deserve this but I accepted it as part of my dugaan (test in life).   

“To be honest, I just didn’t feel like dealing with my PCOS at the time,” she admitted.  

This would come to impact her personally and professionally. 

Friendships were lost and the restaurant had to be closed down. The partnership she was a part of ended.  

However, these setbacks gave her room to take a step back and re-evaluate her outlook on PCOS.  

Seeking to share her experience, Ili posted about her PCOS struggles on Instagram. The response was overwhelming as her followers, including childhood friends she hadn’t spoken to in years, shared their own PCOS stories with her.    

“Once I began talking about it and everyone was sharing their stories, I didn’t feel like I was alone anymore. Now I had people to talk and relate to. For the first time in years, I felt like I could breathe, and I began taking my first steps towards healing,” she said.

It was during this time that friends encouraged her to get in touch with Deena Marzuki and Stephanie Yang, both of whom would become her My PCOS I Love You co-founders.   

Today, Ili considers both women her close friends and cherishes the mutual support for one another.  

Stephanie pushed her into obtaining a second opinion on her PCOS with a gynaecologist specialising in hormone therapy. It was through this doctor that Ili was diagnosed in 2020 with thyroid deficiency and endometriosis.  

With her new-found support, Ili was able to take better care of herself.  

She began taking a combination of prescribed medications to tackle her thyroid deficiency and had surgery to remove her endometriosis in December 2020. To keep herself active, Ili would go for walks, do TikTok videos and dance for around 40 minutes a day.

When it came to food, Ili went gluten and dairy-free, and started eating less sugar – although she does have her ‘cheat days’, she shared laughingly.   

“Being a chef, it’s interesting to explore the science behind food and how it can be used as medicine. I’m obsessed with gut health and nutrition, and I cook a lot more at home now,” she added.  

All of Ili’s efforts began paying off as her PCOS symptoms improved. Her hair was growing back, and she was able to lose weight. To her and her husband’s surprise, Ili also fell pregnant naturally and they had their son in 2022. 

“If you ask me about my journey so far, it’s been a whirlwind. I wouldn’t change a thing as every experience has made me stronger and I feel so blessed. I couldn’t have done it all without the amazing women whom I’ve met along the way,” she remarked.

Dr Stephanie Yang

Advisor & Co-Founder

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Dr Stephanie Yang
Advisor & Co-Founder
A health psychologist by profession and owner of a compounding pharmacy, Stephanie Yang’s health literacy is unsurprisingly better than most folks’. However, it couldn’t have prepared her for what she would learn during a doctor’s visit in 2016.  

The 39-year-old had just returned to work after giving birth to her second child when she experienced what seemed like postpartum issues. Her period was irregular, there was some hair loss and she constantly felt fatigued.    

As it was high time for her annual check-up, Stephanie went to the gynaecologist. Her usual doctor was busy so she saw a new doctor instead.

The doctor performed a pelvic ultrasound and upon seeing cysts on her ovaries, immediately gave a PCOS diagnosis.    

Stephanie remembers her shock at how quickly the diagnosis was made and delivered to her.  

“I told the doctor that having polycystic ovaries doesn’t necessarily mean I have PCOS. To make a proper PCOS diagnosis, they’d need to check for more symptoms and perform additional tests.   

“During the check-up, they didn’t even ask what my other problems were,” she said.    

To her further disappointment, the doctor offered Stephanie no constructive advice on managing her possible PCOS diagnosis.    

Although she already had an idea of what to do next, Stephanie couldn’t help but wonder what it would be like for those who didn’t come from a health background.     

“I remember thinking how confused someone with no knowledge on PCOS would be if this was being told to them.    

“It was overall an upsetting experience. Either they didn’t care enough to put more effort into explaining what PCOS was, or they simply didn’t have the knowledge,” she said.   

Stephanie decided to take matters into her own hands and had blood tests done to check the validity of her PCOS diagnosis. The blood work revealed she had insulin resistance and mild hypothyroidism. These results, along with her other symptoms, gave her the confirmation she needed for a PCOS diagnosis.    

Upon receiving this confirmation, she connected the dots to the changes her body underwent in the past years. Hormonal acne, irregular menstrual cycles, and excessive hair growth during her teenage years were likely early signs of PCOS, but were dismissed as part of puberty. Even the ectopic pregnancy before her first child's birth hadn't raised any alarm bells.    

Post-diagnosis, Stephanie's routine remained largely unchanged as she juggled the demands of home and work life, leaving little focus on managing her PCOS. It was only when her symptoms worsened that she took charge of her health and lifestyle.    

“I have my own de-stressing rituals that I do after having a hard day and I try my best to get plenty of rest. Baking and cooking are some of the activities that help me deal with stress.    

“My diet also plays an important part in how I feel and function, especially after finding out I was gluten-sensitive. I took baby steps to adjust my diet, but I never subscribed to diet fads because those don’t work for me.    

“What’s important in the end is to find something that works for you. Listen to your body and know your limitations because you don’t want to stress yourself out in the process,” advised Stephanie.    

Her revelation about having PCOS sparked mixed reactions among friends and relatives. Many were surprised and disbelieving because she didn’t fit the traditional image of a woman with PCOS. Stephanie had ‘lean PCOS’, a term used to describe women with PCOS who had a normal Body Mass Index (BMI) and weren’t overweight or obese. Their response didn’t dissuade her. Instead, it pushed her to start spreading the word on PCOS.    

Today, her friends and relatives have a very different opinion of PCOS.    

“They now show more empathy and understanding towards PCOS sufferers. I've emphasised the importance of being supportive, considering these women may also face challenges with mental health, confidence, and self-esteem.   

“Be there for them and make sure they have a support system with a positive outlook. Don’t let them dwell in their negativity and spiral into depression,” she said.    

Her office colleagues also benefited from the raised PCOS awareness. Surprisingly, four out of the 16 team members had PCOS, but they were unaware of it until Stephanie's efforts educated them about the syndrome.

It was during the COVID-19 lockdown that saw her coming across more and more Malaysian women online who were lost in their PCOS diagnosis. Many didn’t understand the syndrome and were confused with what to do post-diagnosis.    

As this was happening, Stephanie chanced upon Ili Sulaiman and her PCOS advocacy work. Drawn to Ili’s passion for women’s health and her openness about her own PCOS experience, Stephanie connected with her through a mutual friend. Eventually this led her to meeting Deena Marzuki.

The rest, as they say, is history.    

“They (Ili and Deena) are my partners in crime,” laughed Stephanie as she talked about her My PCOS I Love You co-founders.

“We three aim to spread the message that PCOS isn’t world-ending; support is available for our fellow ‘cyst-ers.’ Our organisation aims to create a safe space where women can share their experiences and find a sense of community,” she said.

Read Part 3 of our ‘Living with PCOS’ Series to find out more on MY PCOS I Love You and its plans for the future.

*Please note that the information provided in this article is for educational and informational purposes only and is not intended as medical advice. If you suspect you have polycystic ovary syndrome (PCOS) or have been diagnosed with PCOS, please consult a qualified medical professional for diagnosis, treatment, and personalised medical advice. The author and publisher of this article are not responsible for any adverse effects or consequences resulting from the use of the information presented here.