SINGAPORE — When Ms Kristen Kiong first learnt in 2012 that she had polycystic ovary syndrome (PCOS), she did not give her diagnosis much thought.
The doctor who diagnosed the then 23-year-old said that she might have difficulty conceiving, but not much else.
“I was young. Marriage and having kids still felt far away,” Ms Kiong said.
PCOS is the most common hormonal disorder in women of reproductive age. It is also the leading cause of infertility for women.
PCOS can cause missed or irregular periods. Back then, while her friends grumbled about their monthly cramps and discomfort, Ms Kiong could go up to more than half a year without a period.
At the time, not having regular periods had not seemed like a big deal. When she was 18, a general practitioner had told her that irregular periods were okay for her age.
It became a problem when she got married in 2016 and wanted to start a family.
“I remember being a bit sad when I learnt that I have PCOS but being 23 at the time, I very soon forgot about it,” Ms Kiong, now 34, said.
“It only sank in about half a year into my marriage when my husband and I started trying for a baby, and nothing happened.”
Ms Kiong, a speech therapist, said that she knew little about the hormonal disorder and was unprepared for her fertility issues.
Most of what she learnt about PCOS was from her own research, often from overseas websites.
“I was never a biology student. Although (understanding how the menstrual cycle works) is not rocket science, I realised that back then, I didn’t really know how periods work,” she said.
“So I kept checking my (menstrual cycle) app and saying, ‘Oh, the app says I’ve ovulated’ but I didn’t.”
Apps that track menstrual cycles are usually designed for women with regular menstrual cycles. For women with PCOS and who do not ovulate regularly, the information from these apps will not apply to them.
But Ms Kiong was unaware of this.
“Then when my friends all started getting pregnant, I wondered what’s wrong with me? It felt like my body had let me down,” she said.
PCOS A LEADING CAUSE OF INFERTILITY
Professor Yong Eu Leong, emeritus consultant with the department of obstetrics and gynaecology at National University Hospital (NUH), said it is estimated that PCOS affects anywhere between 4 per cent and 21 per cent of women globally.
Despite being a leading cause of infertility, many women are unaware that they have the condition. Up to 70 per cent of women who have this disorder remain undiagnosed worldwide, the World Health Organization said.
Dr Christopher Chong, a uro-gynaecologist, obstetrician and gynaecologist at Gleneagles Hospital, said that some of his patients did not know that they had the condition because not all of them experience irregular menstruation — which is one of the typical symptoms of PCOS.
“Very often, they are only diagnosed because they can’t get pregnant. When they come for an assessment, then they find out they are not ovulating well,” he added.
Prof Yong from NUH said that many doctors also lack adequate knowledge in diagnosing PCOS. A pelvic ultrasound scan and hormonal blood tests are used to confirm a diagnosis.
He pointed to a study published last year in The Annals of the Academy of Medicine, Singapore, which found that most doctors who took part in the study were unable to identify clinical features of PCOS correctly and did not follow a diagnostic criterion.
“The psychological complications (of PCOS) were also not well-appreciated among the doctors,” he said.
Prof Yong and his team at the National University Centre for Women and Children are doing a study to gather feedback from patients with PCOS to evaluate their satisfaction levels on their diagnostic and treatment journey.
The aim is to harmonise PCOS diagnostic and management processes across all healthcare institutions and better support patients.
The survey is open to all women aged 21 and above with a formal diagnosis of PCOS made by a medical professional. The team hopes to publish the findings by the end of next year.
POSSIBLE SYMPTOMS AND CAUSES OF PCOS
Dr Cordelia Han, a specialist in obstetrics and gynaecology and a consultant at Raffles Women’s Centre, said that women with PCOS are usually overweight and have irregular cycles of menstrual bleeding occurring infrequently at intervals of more than six weeks or as long as nine months.
Many women with PCOS have an imbalance of male hormones, which means that they may also experience scalp hair loss or acne, or have abnormal facial hair growth.
However, symptoms can vary with each individual.
For example, some women with PCOS are within the normal weight range. Not all women with PCOS have irregular periods, Dr Chong said.
It is not clear why some women develop PCOS. The term “polycystic” refers to the “many cysts” that women with the disorder have in their ovaries.
In PCOS, an imbalance of hormones prevents ovaries from releasing an egg every month. The unreleased eggs do not mature and remain in the ovary, resulting in the characteristic polycystic appearance of the ovaries.
Dr Han said that the disorder has been linked to certain factors, such as a sedentary lifestyle and unhealthy diet that is high in processed food, high fats, and high refined carbohydrates and refined sugars.
Other factors found to contribute to PCOS include genetics and insulin resistance, which means the body is unable to use the hormone insulin properly.
OTHER HEALTH PROBLEMS LINKED TO PCOS
Apart from making it hard for women to conceive, PCOS has been linked to other health problems.
For instance, it increases the risk of conditions such as diabetes and heart disease.
“Due to the hormonal imbalance, some women with PCOS are at a higher risk of changes in the lining of the womb that may be associated with a tiny risk of endometrial cancer, but this can be easily managed by appropriate hormonal treatment,” Prof Yong said.
Patients may also struggle with their physical appearance, sense of self-worth, social relationships and sexuality, and they may experience anxiety and depression, he added.
Dr Chong advised women with irregular periods to go for a gynaecological check-up, even if they are not trying to conceive.
“They should have their menstrual cycle regulated. This is because when there is no menstruation over many months, the lining of the womb thickens. If this continues for too long, the cells will swell and that increases the risk of womb cancer over time,” he added.
PREGNANCY AND PCOS
For women who want to get pregnant, there is hope.
“Although women with PCOS may need some medical help to conceive, they should not be unduly worried that they would remain sub-fertile (have difficulty getting pregnant) in the long term,” Prof Yong said.
Treatment options for this group include medication to induce ovulation and assisted reproductive technologies, including in-vitro fertilisation (IVF).
Lifestyle changes that help to achieve or maintain optimal weight, such as having a healthy diet and getting sufficient exercise, are also important.
Referring to a meta-analysis study by him and his colleagues, Prof Yong said that women with PCOS have similar IVF outcomes as those without the disease.
“There is also evidence that women with PCOS eventually attain the family size they desire,” he added.
However, this group of women would need to see their obstetrician at an early stage of the pregnancy to receive appropriate treatments to reduce the risk of pregnancy complications, Prof Yong said.
He also said that the spontaneous abortion (miscarriage) rate in women with PCOS is 20 to 40 per cent higher than the general obstetric population.
“In addition, women with PCOS show higher risk of pregnancy complications, such as gestational diabetes mellitus and hypertension. These problems might expose them to a higher risk of premature delivery and Caesarean section,” he added.
THE LONG WAIT TO CONCEIVE
For Ms Kiong, trying to get pregnant while having PCOS had felt like a long, humbling “journey of waiting”.
It took her around three years before she got pregnant with her first child.
“Accepting that I needed medical help (to conceive) was the hardest for me,” she said.
“What prolonged the waiting was also because I thought I was young, so all I needed to do was to keep trying.”
There were times when Ms Kiong felt frustrated and ashamed at her inability to conceive. Despite being on medication to induce ovulation, she was not able to get pregnant.
“Nobody really talks about how having a kid can be hard. I didn’t realise that so many things have to come into play that make conceiving so difficult,” she said.
With hindsight, Ms Kiong said that she should not have put off a hysterosalpingogram (HSG), which is an X-ray examination of the womb and fallopian tubes.
It revealed that she also had blocked fallopian tubes.
“That’s when I realised I was my own contraception,” she said.
After treatment to unblock her fallopian tubes, Ms Kiong continued trying to use alternative options such as traditional Chinese medicine and supplements, until she found out in July 2019 that she was expecting her first child, now three years old. Her second daughter was born last year.
While she was having difficulties getting pregnant, Ms Kiong found that reading about the experiences of women with PCOS who have fertility issues gave her hope. This is why she decided to open up about her experience.
She now volunteers at Fertility Support SG, an online non-profit platform started by women who have trouble conceiving and want to support couples with fertility problems.
For women aged 21 and above who had been diagnosed of PCOS by a medical professional and who wish to take part in the survey by the National University Centre for Women and Children, it is available online. The survey closes on Dec 31, 2023.