PCOS: The silent epidemic affecting women
KUALA LUMPUR - As she approached adolescence, Deena Marzuki noted strange changes happening in her body.
The changes were not what a typical teenager would experience. She gained weight, felt bloated and was fatigued all the time.
"I couldn’t understand why because I was very active in sports back then,” said Deena, now 34.
Thinking these issues would resolve with time, she carried on as usual. However, time came only with more symptoms such as excessive body hair growth and frequent headaches. But when she turned 17 and had yet to get her period, Deena knew it was time to seek medical help.
The doctor did a series of blood work and performed an ultrasound that ultimately detected cysts on her ovaries.
It was then, at the tender age of 17, that the doctor diagnosed Deena with polycystic ovary syndrome (PCOS). PCOS is a disorder where women experience an imbalance in their metabolic and reproductive hormones.
Discussions on PCOS have gained traction in recent years as celebrities like Bebe Rexha, Daisy Ridley and Victoria Beckham shared what it was like to live with the condition.
What Causes PCOS?
The reason a woman develops PCOS is still a topic of much debate. Factors such as insulin resistance, excessive androgen production, genetics and obesity are considered the possible culprits behind it.
Dr Farah Leong Rahman, a consultant Obstetrician, Gynaecologist and Fertility Specialist from Sunway Medical Centre Velocity (SMCV), said that despite its prevalence, it was still hard to pinpoint the cause of PCOS.
"The exact cause of PCOS is still unknown. It’s a very complex metabolic syndrome and the causes are multifactorial. "There’s a possibility that PCOS could be due to a genetic predisposition. It may not be directly inherited but it can run in families, so if you have sisters that have PCOS you may have it as well,” she told Bernama in an exclusive interview.
It could also be related to hormones and lifestyles, she added.
An Upward Trend in Cases
PCOS most commonly affects women of childbearing age who, according to the World Health Organisation (WHO), are those between the ages of 15 and 49 years old.
Dr Ashley Chung Soo Bee, a consultant Obstetrician, Gynaecologist and Fertility Specialist from Sunway Medical Centre Velocity (SMCV), said that 1 in 10 women from the age group tend to develop PCOS.
She has been witnessing an increasing number of patients coming in with PCOS at her practice as of late.
"I would say that one or two out of every 10 patients that come in has PCOS,” she said.
A 2022 article published in The Lancet revealed the global prevalence of PCOS to be between 5 and 18 percent.
Malaysia also reported similar results, according to the most current local research on PCOS prevalence among Malaysian women. However, it must be noted that these studies were carried out on a small scale.
In 2018, a study involving 312 female patients from the Department of Obstetrics and Gynaecology of the University Malaya Medical Centre (UMMC) identified 164 PCOS cases. This means that over half of the study’s participants suffered from the condition.
Meanwhile, a 2019 study focusing on female staff at a local university saw a recorded prevalence of 12.6 percent, with 85 out of 675 staff identified to have PCOS.
A more recent study in 2022 conducted in the Klang Valley revealed that 43 out of 410 Malaysian women living in the region were medically diagnosed with PCOS, a prevalence rate of 10.49 percent.
However, it is worth noting that the same study had 11 women (2.68 percent) diagnosed with PCOS based on the signs and symptoms they had, while a further 135 women (32.93 percent) were suspected, but not confirmed, of having PCOS.
The Signs & Symptoms of PCOS Women with PCOS may face a host of symptoms indicating the presence of the syndrome, with some being more obvious in appearance than others.
The American College of Obstetricians and Gynecologists (ACOG) lists out irregular menstruation, infertility, obesity, hirsutism (excess body hair growth), severe acne or adult acne, oily skin, Acanthosis nigricans (patches of thick, dark skin at the body creases) and ovarian cysts as symptoms most commonly associated with PCOS.
Difficulties with weight loss, skin tags, thinning hair at the scalp and male-pattern baldness are also considered symptoms of PCOS.
In Deena’s case, the PCOS symptoms she experienced were multiple, each growing worse over time.
"My weight gain was really severe. Initially, I didn’t have any issues with my (blood) sugar but as I gained more weight, my insulin level shot up and I became insulin resistant.
"I had excessive hair growth at my upper lip and chin area. My body hair was also much thicker than usual,” she said.
She did eventually get her period but her menstrual cycle was very irregular. "There were still cysts on my ovaries and my hormones were imbalanced. Infertility became a concern for me as well because I really wanted children.
"The bloating I had didn’t improve and I started getting full-blown migraines everyday, to the point that I couldn’t even get up from the bed,” she recalled.
Is Obesity Linked to PCOS?
In Malaysia, an increase in obesity cases among the local population was noted in the 2011, 2015 and 2019 National Health & Morbidity Surveys (NHMS) carried out by the Institute for Public Health.
Each subsequent survey also revealed an alarming growth in obesity and abdominal obesity among Malaysian women.
As obesity is viewed as one of the more common symptoms of PCOS, it is understandable to assume a causal relationship between its increasing rate among Malaysian women and PCOS.
However, said Dr Ashley, women with normal weight and body mass index (BMI) stood a similar chance of developing PCOS.
"People always think that PCOS is linked to obesity. However, up to 30 percent of women have ‘lean PCOS’, which is the occurrence of PCOS in women with normal weight. "Women with ‘lean PCOS’ often go undiagnosed for years and can face many fertility challenges and have higher chances of undiagnosed diabetes mellitus, hypertension and heart disease,” she said.
Getting Diagnosed with PCOS
Those with many of the symptoms associated with PCOS may wonder who to see to get themselves properly diagnosed.
"They can go to a general practitioner or even a gynaecologist for a check-up. The most important thing is to get a diagnosis so that they can receive the proper management and treatment options,” said Dr Farah.
As PCOS could also be due to hormonal issues, is there a necessity to also see an endocrinologist? "If a patient comes in with irregular period and has been diagnosed with PCOS through ultrasound or blood tests, a gynaecologist would be able to manage and advise accordingly. "However, seeing an endocrinologist would be helpful if the patient has problems related to weight or metabolic issues such as diabetes or cholesterol,” she said.
What can a new patient expect when they come in for a consultation? "When someone first comes to see me, the first thing I’ll do is ask them about their symptoms, menstrual cycle and family history. "Then, I’ll carry out a physical examination that includes a BMI check and perform an ultrasound to confirm the presence of polycystic ovaries or any other abnormalities. In some situations, we may carry out some hormonal blood tests as well,” she explained.
Dr Farah said a PCOS diagnosis is made if the specific criteria stated in the Rotterdam Criteria are met.
Health Complications of PCOS
With such a variety of symptoms, it is unsurprising that PCOS has the potential to have a wide range of effects on women’s bodies.
According to Dr Ashley, the risk for serious health conditions is greater with PCOS and affected women may have to deal with lifelong consequences.
"Women with PCOS have a higher risk of getting diabetes, particularly if they already have a family history of it. Their chances are similarly increased if they have had gestational diabetes mellitus.
"Those who have PCOS and are obese have a higher chance of developing hypertension and heart disease because of the strain their body is under. There is also an increased possibility of developing hypercholesterolemia (high cholesterol) in the future,” she explained.
Endometrial cancer is also another concern for women with PCOS.
"This is because of the irregularity of menstruation and the harm it causes towards the endometrial lining of the uterus, especially if their menses are less than three times a year,” she said.
Looking at the high prevalence of diabetes, hypertension and hypercholesterolemia among Malaysian women since over a decade ago, one has to wonder how many of those cases were actually due to undiagnosed PCOS.
Treating and Managing PCOS
Though PCOS has no cure, there are ways to manage and treat the syndrome so that the affected women are able to improve their health and quality of life without the possibility of complications.
Dr Farah recommends for women to go for regular check-ups, regardless of whether or not they have PCOS.
"There’s no hard and fast rule as to when you should start having check-ups, but once you’re in your 20’s you should start going to the gynaecologist. If everything looks good, continue having check-ups at least once a year to get your pap smear and ultrasound scans done.
"Even if you’re a healthy woman it’s best to have a check because certain conditions like fibroids and PCOS can go unnoticed,” she said.
Changes to lifestyle are also of the utmost importance.
"We actually advise patients to consume less sugars and carbohydrates. Reducing their intake of fried food, saturated fats, red meat and gluten also helps. It’s important for them to have a balanced diet of lean meat, whole grains, fruits and vegetables while getting regular exercise,” said Dr Ashley.
Cosmetic treatments are another avenue that women can explore when it comes to handling the external appearances of PCOS. Laser hair removal and dermatological procedures are examples of such treatments.
Mental health support is also crucial for women with PCOS as the syndrome takes a significant physical and emotional toll on them.
"Anxiety, depression, low self-esteem and stress are often experienced by these women, affecting their overall well-being. Joining support groups or associations can help women with PCOS by providing them with a sense of community.
"Counselling will be beneficial in helping them manage the emotional impact of PCOS. Support from family and peers is an important element as well,” said Dr Ashley.
Taboos & Stigmas
The topic of women’s health such as PCOS are, until now, often considered taboo. This makes it difficult for women to open up as some find it unsuitable for public discussion, making it a subject open to mockery.
Based on her observations, Dr Farah feels that a lot of Malaysian women are still hesitant to open up about their health.
"It’s not just about PCOS, but also other women’s health problems like fertility issues, sexual dysfunction and vaginal problems. Many women have these problems, but are reluctant to get help because they feel embarrassed to talk about something they’re told should be kept private. "When they finally do come in to see a doctor it’s usually after they’ve tried a lot of over-the-counter medications that didn’t work and, in the process, wasted a lot of time,” she said.
When asked what could be done to break down the walls of silence around women’s health, Dr Farah said more outreach programmes are needed to educate the population.
"A lot of effort is needed to get the message to Malaysians. Start organising some talks in small communities. Carry out CSR (Corporate Social Responsibility) programmes that support and highlight these health issues.
"Also, get conversations started on platforms like social media. When awareness is created, then we get to tell people that there is help available and let them know that they’re not alone,” said Dr Farah.
Inspired by her own struggles with PCOS, Deena has co-founded a locally-based support organisation called My PCOS I Love You.
"Our organisation is focused on creating awareness and educating the public on PCOS. We’re here to also help women with PCOS learn how to manage their lifestyle and take control of their health,” said Deena. - BERNAMA