Polycystic ovary syndrome (PCOS) is the most common cause of infertility, affecting up to 10 percent of women of childbearing age. It is also the most manageable. This is one of the reasons why awareness is important because while it can be difficult for many women with the condition to conceive, it is far from impossible and early diagnosis can yield a positive outcome.
Early diagnosis and appropriate management of the condition can be beneficial for both fertility and overall health,” says Dr. Bart Kuczera of Beacon Care Fertility Clinic. “Spontaneous pregnancy is also possible, but unpredictable. For example, I had a consultation with a patient who wanted treatment for PCOS because she hadn’t had a period in over a year – but during our check-ups we found that she was actually six weeks pregnant.”
Niamh Mongey understands this as she was diagnosed with PCOS as a teenager and always felt she would need an intervention to get pregnant. But later she got pregnant twice without any problems.
“In my early teens, my periods were extremely sporadic. I had my first when I was 12, then it disappeared for a year,” she says. “Then it kept coming, with no warning, every six months or so. And when I was about 16, I was referred to a specialist by our GP and although an ultrasound identified PCOS, no plan of care was implemented. The advice was that I would have to intervene if I decided to have children – which was pretty abstract for a teenager.
“Later, when I met my partner, I knew I wanted to have children with him, but I always knew it was going to be difficult. So when I got pregnant with our first son (now three) it came as a big surprise to both of us as we hadn’t planned on getting pregnant at the time. It was also very easy for us to get pregnant with our second son (one year old).
“I realize that fertility is a big element, but I don’t think my experience is rare. I feel very fortunate to be living with this condition with two healthy children, but it seems irresponsible that medical professionals branded me with fertility issues from a young age and that I carried that into adulthood.”
The 33-year-old communications manager says that while it was beneficial to be diagnosed early, she’s only just learning about the condition as it hasn’t really been talked about.
“I’ve always been a pretty anxious, emotional person,” says the Dublin woman. “This is something I’ve managed to do over the years, but I’ve recently learned that these are common symptoms of living with PCOS. This information would have been useful many years ago when I spent my youth assuming that fertility would be an issue for me later on.
“In fact, a GP told me I needed to have my children as young as possible, which I also felt was irresponsible as it was a small burden to bear. I was also told to go on the pill and hopefully that would induce more regular bleeding – but no diet or lifestyle advice was given.
“I’m just beginning to learn about the effects of PCOS and how common it is. I think it’s just assumed that women with PCOS will be heavier, develop more facial or body hair, or become male pattern bald. But the condition is very nuanced and individual, so the care plan must also be tailored to the individual.
“My advice to others would be to stand up for themselves, or parents to stand up for their young person. The condition is not a blanket diagnosis, so don’t take the textbook treatment plan—be sure to ask about the big picture.”
Maureen Busby agrees. She was diagnosed with PCOS in her 20s and also says she received very little advice or guidance on the condition and how it impacted her life.
“I’m sure the taboo on talking about periods contributed to the delay in my PCOS diagnosis,” she says. “I made the connection myself by reading a medical textbook at a university bookstore and was finally diagnosed at the age of 29 for having suddenly gained a lot of weight and facial hair.
“When I was younger, I didn’t have a problem with my weight, but I didn’t feel that my concerns and questions were taken seriously and not listened to. I was basically told to just walk away, take the pill and come back if I wanted a baby.
“Things have improved over the years but at one point it got so bad with mood swings, irregular periods, fatigue, cystic acne and weight gain that I considered having a hysterectomy to get rid of it all – but PCOS is complex and it wouldn’t have been like that.” solved.”
The 50-year-old says the condition has brought her many challenges, including the disappointment of not having children of her own. “I come from a big family, so I’m very lucky in that regard, but it’s not the same as having a child of your own,” she says. “I’ve also found it difficult to control my weight and have suffered repeated weight distortions, mostly from gynecologists, which has sometimes prompted me to walk away from health care.
“As I was approaching menopause I started a Masters in Health Psychology which I knew would give me an opportunity to do some research as there is a gap in PCOS research in post reproductive life – it is when Whether those of us with PCOS aren’t after childbearing years doesn’t matter, which is so unfair. Research found that as with initial diagnosis, there is little help or support and most people have to manage this time on their own.
“This made me more determined to raise awareness and later I set up PCOS Vitality on social media and started a PCOS support group on Facebook. This has grown to a fanbase of over 17,000 people supporting each other, sharing tips and helping each other with any questions we might have. We were recently granted charity status which is fantastic considering we are run entirely by women with PCOS who volunteer because they are committed to ensuring that others don’t suffer as we do.”
Maureen, who lives in Co Down with her husband, would advise others who have recently been diagnosed to do as much research as possible and make sure they stay as healthy as possible.
“My main concern now is to focus on preventing the long-term consequences of PCOS, which can be very serious, such as type 2 diabetes, fatty liver disease, cardiovascular disease and uterine cancer,” she says.
“Of course not everyone gets that, but I think it’s good to be informed so that you can reduce your risk. PCOS has not received the medical or scientific attention it deserves, and there is still much to be learned about this lifelong condition.
“My advice to anyone who has just been diagnosed would be to check out our website which has many free resources. You have to be your own best health advocate, and one thing I always tell people is to realize that PCOS isn’t your fault.
“Although there is no cure, there are many things you can do to manage your symptoms and many women are successful in having children. I now use supplements, diet and exercise to control my symptoms, but we are all different and what works for some women may not work for others.”
dr Bart Kuczera agrees, saying that treating PCOS depends on the actual needs of the patient: “There is no one-size-fits-all way to manage it — for example, anti-androgen drugs can be prescribed to control acne, and the pill can be prescribed to regulate their periods,” he says. “Ovulation induction drugs may be prescribed for women trying to conceive.”
For more information, see pcosvitality.com, hse.ie and beaconcarefertility.ie
https://www.independent.ie/life/health-wellbeing/health-features/pcos-the-advice-was-just-to-go-away-take-the-pill-and-come-back-when-i-wanted-a-baby-42052459.html PCOS: “The advice was to just walk away, go on the pill and come back when I wanted a baby”