Women in Malaysia largely unaware about PCOS hormonal disorder

December 20, 2021

By Mohani Niza

Social entrepreneur and life coach Deena Marzuki, now 32, was 17 when she was diagnosed with polycystic ovary syndrome (PCOS), a hormonal disorder common among women of reproductive age. Her doctor told her she would be infertile and prescribed her birth control pills to regulate her period. She was also told to lose weight.

“And that was all,” Deena told Healthcare Asia. She was not properly equipped with empowering information by her doctor about the disorder. “I have to admit that at the time I was diagnosed, I didn’t care too much about my body because the symptoms were still under control – or so I thought.”

It was later that Deena suffered from fatigue, bloating, migraine and daily pain and her weight shot up to 130 kg. It was then that she started to take her health seriously, yet her doctors were still not diagnosing her properly.

“There weren’t proper instructions on what to do or what to read up on. I was given meds and meds and meds,” Deena recalled. “I was going around in circles for years and spent hundreds of thousands of Ringgit. It was horrible. I was miserable with depression and severe anxiety about my body image. I hated the fact that my body wasn’t working like normal and doctors or healthcare practitioners did not help my journey. I was called lazy by fitness instructors.”

Things only began to change when Deena joined PCOS communities from the US and learned how to manage her health better. She also experimented with different supplements and doses to find the right one, and now happily announced that her PCOS has been reversed.

Deena is not the only one with a PCOS story to tell. Food host and entrepreneur Ili Sulaiman, 35, went to her gynaecologist for a routine check-up because her period was late for 60 days, and she exhibited other PCOS symptoms like weight gain, hair loss and extreme fatigue as well. She told Healthcare Asia that she did not expect to be diagnosed with PCOS, but after a blood test and an examination of her uterus, her doctor found cysts and a high reading of insulin in her blood.

“Overall, I did not know what to do in the beginning but just had to listen to my doctor and take the medication that was given, which was Metformin, and also listen to her advice of cutting out sugar from my diet and doing some lifestyle changes,” she said. “It wasn’t easy to get information at that time and I didn’t know anyone who had this condition. It was a very confusing time.”

It is because of the confusing and tiring nature of having PCOS that Deena and Ili, along with their friend, healthcare entrepreneur and women’s health coach Dr Stephanie Yang, 37, started My PCOS I Love You, which brands itself as “Malaysia’s trusted one-stop resource center for PCOS.”

Deena is the president of the project, Ili the ambassador, while Dr Stephanie serves as the advisor.

Visitors to the website can find more information about PCOS, including facts and myths about the disorder, browse merchandise as well as volunteer their time to the cause.

“From a consumer perspective and also someone in health care, we can speak on behalf of so many women that awareness is still lacking in terms of what PCOS really is, the confusion between symptoms, how it is diagnosed, treatment options and so on,” Dr Stephanie told Healthcare Asia.

Why is PCOS so confusing?

Dr Stephanie explained: “Some argue that PCOS can be difficult to diagnose because some of its symptoms have a variety of potential causes, for example, heavy menstrual bleeding could be caused by a range of conditions, such as uterine fibroids, polyps, bleeding disorders, certain medications, or pelvic inflammatory disease, in addition to PCOS. No one talks about insulin resistance, infertility, and other symptoms that could present itself in someone with PCOS. Back in 2019, there was apparently the first large-scale study that was done locally which revealed that there is a high 12.6% prevalence of PCOS among Malaysian women yet in suburban areas, teenage girls with the condition do not understand what they are going through, and not all mothers are aware of the health consequences of this disorder, let alone in the more rural areas where they have little or no access to healthcare. This is why public awareness of PCOS is important because over half of the 10,000,000 women that have it, are unaware of it. And awareness helps the community understand that symptoms like irregular periods, pelvic or abdominal pain, and facial acne or hirsutism are not something to be ignored and getting it checked is necessary.”

According to Stephanie further, doctors too are mostly unaware about PCOS: “From my personal experience, my obgyn told me that I had polycystic ovaries and that I may experience difficulty conceiving and that was it. She did not ask if I knew my mum had it, or if I had other prior symptoms or if I felt any different. Whilst we know doctors are taught, trained and aware of the basics of PCOS, it really is the passion and interest of a doctor to go the extra mile to fully understand what a woman with PCOS is going through before deciding that she does have PCOS.”

“Some of us know that a complete diagnosis of PCOS is not purely from the results of one scan but rather taking into consideration other findings/results like blood tests, physical examination and medical history,” Stephanie said. “It is not just about giving metformin and birth control pills. Not all doctors know and understand what a flipped ratio meant, or if hba1c is important, or if inflammatory markers are important, or even the type of hormone tests to order. As PCOS is a complex hormonal and metabolic disorder that also affects the endocrine system, doctors have to take the time to understand their patients’ problems and if it stems beyond just polycystic ovaries which some may or may not have. We know the statistics are alarming but at the end of the day, we all have to work together to increase awareness and educate both the community and prescriber on what PCOS really is, because coming to an accurate diagnosis is the first step in managing PCOS as it is the start to improving the quality of life of those with PCOS.”

Dr Stephanie pins our conservative culture for the lack of awareness on PCOS. “Perhaps our culture does not encourage us to openly speak about our problems. Perhaps growing up, our only source of information was from our family doctors, mother, grandmothers and same-sex role models and not so much the internet as the generation these days are privileged to have access to. Furthermore, it was not popular for doctors to get up on stage to talk about health conditions, especially a complex disorder like PCOS and how it affects our mental health, emotions, and overall well-being.”

Managing PCOS

Khaili Sopian, a 29-year-old freelance writer and curve model, found out that she had PCOS after not experiencing her period for a full year.

Khaili told Healthcare Asia that she experiences a host of PCOS symptoms, including hormonal acne, weight gain/difficulty losing weight, strong sugar cravings, insulin resistance, facial hair and hair loss.

“Since I have changed my lifestyle I would say my symptoms are fairly controlled,” she said. “I do get spots on my jawline from time to time but nothing too extreme. The main obstacles I currently face is getting my natural menstrual cycle to start again and navigating insulin resistance.”

“Besides the higher chances of getting ovarian cancer that hangs at the back of my mind, the absence of a natural menstrual cycle does not bother me too much,” Khaili said further. “I am on medication that stimulates a monthly flow that is similar to a period. Changing my weight is a work in progress, which hopefully will eventually help me get a natural period again. I try my best to make conscious nutritional decisions that will help my PCOS body when it comes to food. More or less, I try my best to not eat for pleasure but for survival instead. I exercise with a mix of cardio and resistance training. More on resistance training. And I play sports.”

“Being aware of my insulin resistance requires me to check my blood sugar every now and then, to keep an eye on it. An interruption I face in my life, is that I take extra time to choose a meal at restaurants. I feel like I am constantly weighing out what I can or cannot eat and this sometimes can create a lot of anxiety and/or feelings of guilt. Sometimes it can also be an isolating experience, especially in situations where I can’t eat anything from the menu, due to the contents of the meal or the price. Unfortunately having certain dietary needs that are considered “healthier,” means that the meal will cost more,” she said.

Khaili has the following advice for fellow sufferers of PCOS:

1. You are not the first to go through your hurdles, nor will you be the last.

2. This journey is not easy, so rest when you can, but do not give up on figuring out what works best for your PCOS-type.

3. Whatever difficulties are stacked against us, do not hesitate to vocalise what you need, set your boundaries and push/create space for yourself.

Meanwhile, the women behind “My PCOS I Love You” has this to say about increasing the public’s knowledge about PCOS: “There needs to be open conversations about women’s health at home, for example parents with their children – both boys and girls, and also in society, such as schools, workplaces, institutions, communities etc, to normalise the conversation about women’s health issues and conditions.”

“We need to stay away from the stigma that talking about periods, talking about hormones, and talking about women’s health should be something to be ashamed of,” they said further. “Awareness not only about PCOS but also information about where to seek help, where to find treatment and also a place where women feel safe to be looked after without feeling ashamed of their condition. PCOS is the underlying disease that leads to chronic illnesses such as diabetes, heart problems and cancer. If more conversation surrounds the topic of women’s health, there is better understanding, better acceptance and a possibility of helping thousands of women overcome this disease.”

Tags: hormonal disorder, malaysia, PCOS, women