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.