This article is published in conjunction with PCOS Awareness Month that is observed during the month of September every year, to show support and solidarity towards those suffering with the syndrome.
KUALA LUMPUR – “You can’t get pregnant”.
“You’ll never be a mom”.
Words like those haunted Deena Marzuki and Ili Sulaiman for years as they battled with polycystic ovary syndrome (PCOS).
Being told so definitively and repeatedly that they were infertile was crushing, both women told Bernama in an interview.
The lack of empathy and understanding over their possible loss of motherhood was akin to rubbing salt to an already stinging wound.
Sadly, their bitter experiences with infertility are not uncommon for women with PCOS.
What is Infertility?
As of 2023, the World Health Organisation (WHO) describes infertility to be “a disease of the male or female reproductive system defined by the failure to achieve a pregnancy after 12 months or more of regular unprotected sexual intercourse”.
Current global estimates from the WHO report states that around one in six people of reproductive age will encounter infertility over the course of their life.
When it comes to female infertility, the WHO explains that a possible cause was abnormalities in the reproductive and endocrine system.
It listed PCOS as an example of this.
Does PCOS cause infertility?
According to Dr Habibah Abdul Hamid, Head of the Obstetrics & Gynaecology Department of Universiti Putra Malaysia (UPM), PCOS is one of the most commonly presented syndromes in women with infertility issues.
“PCOS is a very complex condition that may involve multiple systems in a woman’s body, including the cardiovascular, endocrine and metabolic systems. It also has long-term effects on their life.
“From my personal experience, a lot of women who have visited my fertility clinic have PCOS. Their numbers have also increased in recent years,” she said.
Research both abroad and locally have shown an undeniable link between PCOS and infertility. In fact, the WHO has described PCOS as the leading cause of infertility worldwide.
A 2022 article by US’s Centers for Disease Control and Prevention (CDC) also puts PCOS as one of the main causes of infertility amongst women.
The CDC states that up to 5 million women (6 to 12 percent) of reproductive age in the US are affected by PCOS-related infertility.
The latest research into PCOS in Asian countries also found infertility to affect a large number of women with the condition. Though the research quoted does not solely focus on PCOS’s effects on female fertility, it does take into account the number of women with PCOS experiencing infertility.
A 2019 research in Pakistan on evaluating the clinical manifestations, health risks and quality of life associated with PCOS among local women saw 146 (33.2 percent) cases of infertility detected from the 440 women with PCOS surveyed.
Another 2019 research, this time in Vietnam, identified 355 (74.1 percent) out of 479 women with PCOS as struggling with infertility. More recently in 2022, a PCOS prevalence study in China discovered 76 (9.2 percent) out of 826 women with PCOS had infertility.
A Malaysian research in 2012 that studied the prevalence of Metabolic Syndrome revealed that 82 (82.8 percent) out of 99 women with PCOS to also be infertile.
Newer research in 2022 that focused on developing a Malay version of the Polycystic Ovary Syndrome Questionnaire discovered 109 (79 percent) out of 138 women had fertility problems.
What causes PCOS-related infertility?
One of the main causes of infertility in women with PCOS is anovulation, says Dr Ashley Chung Soo Bee, a consultant Obstetrician, Gynaecologist and Fertility Specialist with Sunway Medical Centre Velocity.
“When a woman has anovulation it means she is experiencing no ovulation. There is no release of a mature egg from the ovaries each month as the egg is underdeveloped. When no egg is released, she will miss the fertile period to conceive,” she explained.
Without ovulation, the follicles containing the underdeveloped eggs will turn into the small fluid-filled sacs that are characteristic of the polycystic appearance seen in PCOS.
Women with PCOS also experience disruptions in their metabolic and reproductive hormones, which contribute towards infertility, she says.
“Imbalanced metabolic hormones like high insulin levels can lead to women developing insulin resistance. Imbalances in reproductive hormones include elevated levels of male hormones (androgens) such as testosterone and luteinising hormone, and reduced levels of follicle-stimulating hormones.
“These irregularities can negatively impact ovulation and affect the development and maturation of eggs, making it difficult to achieve pregnancy,” she said.
In addition to the challenges of achieving pregnancy, women with PCOS also face other issues associated with infertility.
“Not only will they struggle to get pregnant, when they do, they tend to also face higher risks of pregnancy complications related to PCOS, including miscarriage or early pregnancy loss. Women with PCOS are three times as likely to miscarry in the early months of pregnancy compared to women without PCOS,” shared Dr Habibah who is also a consultant and Head of the Obstetrics & Gynaecology Department at Sultan Abdul Aziz Shah Hospital, UPM.
Is PCOS contributing to lower birth rates?
Shocking news broke in Malaysia last year when the Department of Statistics Malaysia (DOSM) reported that the country’s Total Fertility Rate (TFR) had reached record new lows with 1.7 births per woman as of 2021.
(TFR is the number of children that would be born to a woman if she were to live to the end of her childbearing years and bear children in accordance with age-specific fertility rates currently observed.)
Data provided by DOSM showed that Malaysia’s TFR has been on a steady decline over the past few decades. A 40-year comparison (1980 – 2021) between Malaysia’s TFR and the global average extracted from the World Bank showed both rates to be on the decline.
However, the global rate, at 2.3 births per woman for the year 2021, is still higher than that of Malaysia’s. To remedy this, Malaysia needs to get its TFR to at least 2.1 births per woman – which is the recommended replacement level fertility rate.
(A replacement level fertility rate is the level of fertility at which a population exactly replaces itself from one generation to the next.)
The Secretary General of the Women, Family and Community Development Ministry, Datuk Dr Maziah Che Yusoff commented on Malaysia’s declining TFR in an online speech she made during the 2022 National Population Conference.
“Among the main factors contributing to the decline are delayed marriage which causes the reproductive period to be shorter, tendency to have a small family for various reasons such as financial capability and infertility problems due to health reasons.
“This decrease in the fertility rate will simultaneously accelerate the ageing process of the population in Malaysia. It is expected that 15 percent of the population will be 60 years old and above in 2030,” she was quoted as saying in a report by Bernama last year.
The mention of “infertility problems due to health reasons” raises an important question about the potential link between declining fertility rates and health conditions like PCOS.
As PCOS is known to cause infertility, it would be interesting if further research and data analysis could help shed light on this possible link and provide valuable insights for addressing fertility challenges in the country.
Women with PCOS can’t have children: Fact or Myth?
Given its negative association with female fertility, it is no wonder that many believe women with PCOS are destined to be childless.
However, Dr Ashley disagrees with the belief that women with PCOS can’t have successful pregnancies.
“About 70 percent of them have difficulty getting pregnant, but this doesn’t mean it will be impossible for them to have children. Chances of pregnancy are individualised. It may take longer for some women with PCOS to get pregnant, while others may need medical intervention.
“Other factors also need to be considered. Age, existing medical conditions, previous surgeries on the uterus or ovaries, and the partner’s sperm quality and quantity all play an important role as well,” she said.
Despite being told they would have little success in getting pregnant, Deena and Ili would go on to have their own children, taking different paths to achieve their pregnancies.
Deena’s first pregnancy, in August 2020, was a natural one. It came as a huge relief for her as she and her husband, Reza, had been trying for a baby for about a year since getting married.
“I think the pressure came from me being so hung up over the doctor telling me I was infertile all those years ago. It was also difficult for me to determine when I was ovulating because my period was irregular.
“In the months leading up to my pregnancy, we were getting into fights constantly and Reza fell into severe depression caused by the stress,” she shared.
Their initial joy over the pregnancy was short-lived as Deena’s pregnancy ended in a miscarriage in the eighth week as the egg wasn’t healthy.
It took Deena and Reza months to recover from the entire ordeal.
They both took time to mentally and physically heal from the pressures of conceiving, and had a long conversation about the state of their marriage.
Both gave pregnancy a second try a year later, but this time the couple decided to undergo in vitro fertilisation (IVF).
“We did the IVF procedure in July 2021 and we got 10 eggs. We did the egg implantation in December 2021 and found out 10 days later that it was successful. It was in August 2022 that we welcomed our baby girl.
“IVF was not something I took for granted. I did my best to make sure I was mentally and physically fit as I could be. Alhamdulillah, my pregnancy went well,” said Deena.
In Ili’s case, she had reluctantly made peace with the idea that children weren’t going to be a part of her future. It was difficult for her to believe otherwise as the sceptics around her kept iterating it.
After being diagnosed with PCOS, endometriosis and thyroid deficiency, Ili’s health and happiness became her priority.
“After I had my endometriosis removed in 2020, it was a time of recovery and self-love. I learned to listen to my body and set clear boundaries on what would stress or overwhelm me,” said Ili.
That’s why it came as a surprise to her and her husband when she fell pregnant naturally, a few months after her endosurgery.
“The pregnancy wasn’t planned. We were so excited and nervous about it, given everything I had going on with my health. Everyone around us was so supportive as well. Our son arrived in 2022 and motherhood has been such a rewarding, but tiring, experience,” said Ili with a laugh.
She said that it was important for PCOS sufferers to not succumb to the idea that they were incapable of successful pregnancies. Instead, she said, they should focus on healing themselves and reaching out to someone they trust.
“I’ve heard many horror stories from women with PCOS who were trying to conceive. They were told they’d never get pregnant and everything was their fault because they were fat.
“Don’t listen to that. Yes, it’s more difficult for us to get pregnant but it’s not impossible. There are so many different ways for us to manage our bodies for pregnancy,” she said.
Fertility treatments for women with PCOS
PCOS sufferers who wish to get pregnant should consider improving their lifestyle management, says Dr Habibah.
“We encourage them to improve their lifestyle by adding more activity in their lives and to take care of their diets. This can help increase the chances of success in ovulation and pregnancy rates,” she shared.
Medical assistance is also another helpful avenue for these women.
According to Dr Ashley, there are various treatments for infertility that they could explore.
“After an assessment, I’ll present the options available that can help with ovulation. We can start off with oral medication and if that doesn’t work, we can move to trying injectable medication that helps stimulate the ovaries for ovulation.
“IVF is also an option but only a small number of women actually need to go through it. Usually, the oral and injectable medication methods work in improving their fertility and they can go on to have a successful pregnancy,” she said. – Bernama
