Shannen Tan was diagnosed with polycystic ovary syndrome (PCOS) when she was 17. She had irregular periods and although she felt liberated not having to worry about “strategically planning your activities or coping with the fatigue or cramps or massive amounts of bleeding that came with the time of the month”, she went to see an OB/GYN at KKH to find out if anything was wrong. She had an ultrasound and found 11 immature follicles in her left ovary.
“They looked like tiny dots or little bubbles and they made my ovaries look like Swiss cheese or a lotus root,” Shannen recalls. “Basically, these bubbles were eggs that weren’t released. I just thought that the reason why I didn’t have my period was because my ovaries were constipated and were quietly hoarding eggs for a rainy day. The technician thought this was a great time to tell me, ‘Oh you have just the right amount to start your own football team!’ Yes, that’s exactly what I need to fulfil my dream of unseating Albirex Niigata as champions in the Singapore Premier League.”
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When she went for a review session a couple of months later with a female doctor at the same hospital, Shannen’s experience wasn’t exactly a pleasant one: “That day, it was a young but stern looking female doctor. The moment I sat down, she muttered a brusque hello and quickly glanced through my ultrasound results on her desktop. Abruptly, she said, ‘OK, you have something called PCOS or polycystic ovary syndrome which means that you’re probably infertile. There’s no cure.’
“I don’t remember what she said after that. She scribbled and circled something on a piece of paper but I wasn’t paying attention. I just sat in the chair – stunned into silence – I didn’t know what to say, I just cried…out of shock. I left the room in a snivelling mess,” she adds.
Shannen revealed she got very angry at the way the news was given to her so she went back into the doctor’s room and said to her, “You can’t do that. You can’t just drop a bomb and not expect someone to be crushed by what you are telling them. I don’t know what to do with myself with what you just told me. You need to have better bedside manner. I know you’re tired but you need to be gentle with the way you are breaking the news. It’s our lives we’re talking about. You can move on from the news quickly but we can’t. You can’t do this to others. You need to be better.”
The doctor’s voice trembled and she told Shannen, “Okay, I’m sorry.” It wasn’t just the diagnosis that was a bad experience for Shannen. She describes regular visits to the doctor to check on her condition as “painful”.
>“If you are a regular lurker on online PCOS communities, you will come to realise that our symptoms are usually seen as a form of laziness or that we don’t work hard enough to combat our issues,” she shares. “I used to obsessively read PCOS medical journals and follow a strict regime of a low carb diet, and exercising five to seven times a week. I would weigh myself everyday and chart these data points on the graph. Even when I shared all these details and effort with the gynaecologist, she told me to ‘keep it up and work harder’.
“PCOS has a global prevalence of 1 in 10 women. Just as a comparison, diabetes has a prevalence of 1 in 9 in Singapore,” she adds.“In spite of its prevalence, PCOS is quite an overlooked and misunderstood condition. And, unfortunately, aced with a lot of sexism in the medical industry – it’s horrifying that there’s so much lack of knowledge around the condition even amongst medical professionals.”
Female pain is seen to be not taken as seriously as men’s. A 2021 study by the University of Miami found that when men and women express the same amount of pain, women’s pain is considered less intense based on gender stereotypes.
Dr Lim Whui Whui, associate consultant, Department of Obstetrics & Gynaecology, SGH, reveals that gynaecological conditions related to the female reproductive system are generally difficult to diagnose as they may present with overlapping symptoms related to the pelvic/abdominal region and menstrual abnormalities.
“Uterine conditions like fibroids, adenomyosis, endometriosis, endometrial polyps and endometrial cancer; ovarian conditions like polycystic ovarian syndrome, ovarian cysts and ovarian cancer, may present in a similar way,” she explains.
(Adenomyosis: when the endometrial tissue grows into the muscular wall of the uterus Endometrial polyps: growths attached to inner wall of the uterus that extend into the uterine cavity. They are usually benign but some can be cancerous.)
She notes some symptoms to be aware of:
- abnormalities in your menstrual cycle, for example heavy, prolonged menstrual flow
- irregular cycles
- bleeding in between menses
- painful menses
- an increasing pelvic mass
- excessive bloating
- pain or pressure in your pelvic region
- an abnormal vaginal discharge
Dr Lim says that these conditions are hard to diagnose as “the pathway to achieving a diagnosis for these conditions may be fraught with various pitfalls which can be patient-related and medical-related”.
Patient-related factors could be a delay in seeking help for various reasons: “Some women may attribute the symptoms being part of the norm, some may not have the time to seek advice or the knowhow on where to go for help and others may simply be averse to seeking medical attention due to previous experiences,” Dr Lim explains.
Medical-related factors can include a delay in referral to the appropriate specialists or ordering of the right investigations for diagnosis and a mismatch in expectations between physicians and their patients.
“Importantly, communication breakdown between physicians and patients can also attribute to diagnostic difficulties,” Dr Lim says. “Unfortunately, some gynaecological conditions can produce vague or few symptoms requiring a high index of suspicion, while >others may present with symptoms that mimic other clinical conditions, making diagnosis even more difficult.”
Dr Lim also reveals that the prevalence of women suffering from pelvic pain is dependent on the underlying cause. The prevalence of chronic pelvic pain, which refers to having a pain duration of at least 6 months, can range from 2% to 24% of females in the reproductive age group worldwide.
“The estimated prevalence of endometriosis in Singapore is 10-15%,” Dr Lim points out. “However, we do know that this number is under-reported and as awareness and knowledge regarding female pelvic pain increases, the number of women coming forward with this condition will increase over the years.
She adds that, although uterine fibroids are present in 30-40% of women in Singapore, most may not suffer from any symptoms.
Sonia* was in her mid-30s when she tried to get pregnant. After a few unsuccessful months, both she and her husband went to see a fertility doctor to get tests done. She later found out she had severe endometriosis, a diagnosis that shocked her.
“I had heard of the condition before but never ever thought I would have it,” she says. “My periods arrived like clockwork every month and I had no other symptoms like lower back pain or pain during or after sex. I did have pretty bad cramps but I thought it was normal as everyone tells you that too.”
It was only after she was diagnosed that she shared with her fertility doctor that her period cramps were so bad, she had to take the day off every month on the first day of her period as it was hard to get out of bed. She popped strong painkillers four times a day for five days every month and still had cramps and body aches – although they were more bearable with the pills.
“Everyone, including my family and friends, told me I was just being lazy and that cramps were normal and I should just get out of bed and get on with my life,” she adds. “My doctor gave me prescription painkillers and never suggested any tests or showed any concern. It was my fertility doctor who eventually told me the severe cramps I experienced weren’t normal. There is way more information out there about endometriosis now and I wish I had known more about what ‘normal’ period cramps are so I would’ve got checked much earlier.”
Shannen is now 29 and an actress and theatre practitioner. In March this year, she staged a show about PCOS called Lotus Root Support Group. She credits having other women in her life who have PCOS too as her support system, which grew after her show was staged.
“Going through this journey on your own is very lonely and very hard. I think it is important to find your community of people whom you can rely on for support, to form your own ‘Lotus Root Support Group’, so to speak,” she advises. “After doing my theatre show, so many acquaintances and friends messaged me to say, ‘Hey, omg, I didn’t know you have PCOS, I thought it was just me.’ And I was shocked by how many people in my life also have PCOS!
“Based on the post-show feedback, so many women left comments saying, ‘Thank you, I feel so seen.’ The knowledge that you are not alone becomes an important form of comfort,” she adds.
It can be hard to know if the pain you’re experiencing is normal or something to worry about. Take period cramps, for example. How do you know if you should be running to a doctor to get help? In a survey conducted by local period-care brand Blood in January 2022, 83% of respondents revealed that period pains affect their lives regularly. One in three cited both physical and mental impact. Additionally, 37% of respondents said they suffer from severe period discomfort that derails their daily lives for a few days every month.
Period pain is the result of the muscle of the uterus tightening during menstruation. Dr Lim explains that this is felt as painful cramps in your abdomen just before your period begins or across the duration of your period. Period pain may be due to the muscle tightening or they may be attributed to female conditions such as fibroids, adenomyosis and endometriosis.
“You should seek medical advice if the pain is severed over-the-counter painkillers are not effective,” she says. “This is especially important if it is affecting your quality of life and your daily activities. Any change in your usual period pain or if it is associated with other symptoms such as heavy periods, nausea and pressure symptoms should prompt you to make a doctor’s appointment.”
Even if you do see a doctor for your pain – period cramps or otherwise – it could be a case of not getting anywhere as the doctor tells you it’s a normal part of being a woman or just a minor inconvenience that you can’t do anything about. Or, worse still, being told it’s ‘all in your head’.
Dr Lim has some advice for women whose symptoms are dismissed as normal by doctors:
- Firstly, it is essential to seek advice from a doctor whom you trust and have good rapport with
- It is important to write down and convey your symptoms and concerns to the doctor and never be afraid to ask questions or seek clarity if you are unsure of what is being told to you
- If you know you may get anxious or worried about seeking medical advice, get someone you trust to come along with you for support, if possible
- Always remember that you know what you are feeling and how your body works best, so if you feel pain, it is real and you should not be told otherwise
- Seek a second opinion if you feel you are not being heard
*not her real name
Text: Balvinder Sandhu/HerWorld