by AISHA TIMOL
Two years ago I was diagnosed with “Premature Ovarian Failure”, which put me through early menopause. I was 33 and always wanted to have a family – at some point.
I would love to be writing this story as some sort of freak case but the fact is one in a hundred women will go through menopause before the age of 40.
This little-known fact is heart-breaking for anyone who waits until their 30s to start having children and ends up being part of that one per cent.
I grew up in the 1980s and 90s – a time when girls were actively encouraged to delay starting families in their early 20s, turning away from what their mothers and grandmothers had done, to pursue education, a career and travel.
I was part of a generation where girls were told could be anything they wanted to be – and I still believe this part of the Government’s message and campaign remains true. I recall seeing posters in my classroom featuring girls working in traditionally male roles and teachers telling me that as a straight ‘A’ student I had so much potential and that the world was my oyster.
My generation were told we could have it all. And we – my friends and I – all firmly believed it. We all thought that having a family could wait til our 30s or 40s even. I remember secretly harbouring fears in my early 20s that a pregnancy would be viewed as a failing somehow. Dutifully, I went on to university to get my degree, launched my career, travelled the world, invested in property and followed a path that was both expected of me and that I’d grown to want. Menopause was never on my radar.
But the fact is, as I later discovered, I was playing a game of Russian roulette. Every year that passed my fertility was declining at a rate of knots – much faster than my peers, most of whom will hopefully go through menopause at the average age of 51.
At 29 I unexpectedly fell pregnant with my first child and now I look at my daughter and realise what a miracle she is. Just a few years later I was going through menopause, though I had no idea that’s what it was at the time. I’d skipped only one period – which I put down to stress. I felt very hot – but I thought it was a really hot spring (it was October) not hot flushes, even though the heat in my body did come over me in waves or surges.
I vividly remember the exact moment I was given the news of my menopause diagnosis – it sounds clichéd but I really do remember it as clearly as if it were yesterday. It still brings tears to my eyes two years on because the pain of this diagnosis does not go away – in my case this is as much because of the appalling delivery of the news as the fact of it.
I used to work with Dr Fiona Wood, the Director of the Royal Perth Hospital Burns Unit, during the time of the 2002 Bali bombings. I was the PR Manager of Royal Perth Hospital at the time. I always remember that Fiona was determined to treat each of those patients as if they were her only patient and emphatically stating her conviction that each and every patient would receive the highest standard of care.
So I left my time working in health thinking very highly of doctors, thinking they all viewed patients as humans and not as numbers. How naive I was. When I initially went to my now-ex-GP with complaints that I was suffering from hot flushes and night sweats and that a friend had suggested I might be peri-menopausal, he laughed at me. Not just a chuckle. It was a sneering laugh as he informed me: “You’re too young for menopause.”
I asked him to humour me and pleaded with him to send me for blood tests to check my hormone levels. Shaking his head, he agreed. Several weeks later I went back for my results and, looking slightly embarrassed, all he said was: “Turns out you were right – you’ve gone through menopause!” Just like that.
At that moment, time seemed to stop. My world definitely stopped. I went into shock – it was as if I was glued to my chair, unable to believe his words. I kept thinking, no, no there must be a mistake – maybe my results were mixed up with those of another patient? Through my tears I managed to blurt out: ‘But I want more children – I only have one, are you telling me I can’t have any more?’
Once more he laughed and said: ‘Oh, that’s out of the question – menopause means that you’re done and dusted. I’m not sure if you’re a betting kind of girl and you understand odds, but if you are your chances of falling pregnant are about one in a million.”
I continued crying and he sat there silently, offering not one word of comfort. Eventually, he said this: “The only way it might be possible would be to use a donor egg and even then it may not work. Besides, having more children is the least of your concerns. This condition predisposes you to some really serious diseases – you’re now at high risk of heart, osteoporosis and we have to send you for an ultrasound immediately to rule out other things too.”
The man who believed a woman in her 30s was not able to go through menopause was suddenly a subject-matter-expert on it. It still beggars belief when I think of it. And with that he wrote me a referral for an ultra-sound and added that I’d probably want to get it done soon.
I was not offered a referral to see a counsellor to deal with the psychological fall-out from such a diagnosis and I strongly believe that this should be offered to any women given this diagnosis as a matter of course. My emotional turmoil went beyond my physical ability to have more children; it severely affected my sense of being a woman. As a society, the notion of fertility and sexuality is strongly entwined. I suddenly felt old and undesirable – despite my other half reassuring me that this wasn’t the case in his eyes.
But I digress. Trying to make sense of the news and ask the right questions I asked if I should start taking calcium if I was high-risk for osteoporosis. He said: “You can if you want to. Whatever good it’ll do you. These things tend to take their own course.”
I wish I was joking when I recount all this. It’s incredible really that there are GPs out there – medical ‘professionals’ – who are so ill-informed and blasé, and I hope he is the exception rather than the rule. Today, thankfully, I have found a great GP who has a special interest in the endocrine system, is much more proactive, compassionate and who has a great belief in nutritional medicine. I understand that these days many universities are actually interviewing people who wish to study medicine to vet them for ‘communication skills’ – aka ‘bedside manner’. Thank God.
In the past two years I have also joined the International Premature Ovarian Failure Association and through them have made contact with other Australian women living with this condition.
Some were diagnosed as young as 15 years old, others spent their 20s on the pill and when they went to start a family in their 30s found their period never came and the pill had masked all the symptoms of this devastating condition. Speaking to these women is like having found a sisterhood – they understand what I am going through in a way that my friends and family, no matter how much they care, simply cannot.
I also am part of a Facebook support group. It makes me grateful to live in time where I can make connections with people all over the world who have the same condition as me and exchange information and provide and receive emotional support. I can not imagine what it must have been like for women who had this in the past when such support and information via the Internet was not available.
But the main message I want to get across from my story is that about the relatively new test known as the AMH (anti mullerian hormone) test, which measure ovarian reserve. Any young women who thinks she might like to have children ‘one day’ would be wise to get that test done.
What this test means is that if you are planning to postpone motherhood, you can now check how many eggs you have left (you won’t be given an exact number per se, but you will get a very accurate idea of what the doctors call your ‘ovarian reserve’.) Once you know this, you can then decide if waiting til your 30s or 40s is a good idea for you as an individual. You can request a referral from your GP for this test, which isn’t covered by Medicare but is well worth the $60 it will set you back. If this was available to me in my 20s and I knew then what I know now, I would have jumped at it.
It may not have change the outcome of having Premature Ovarian Failure today, but I might well have been able to have complete my family and to have gone on to have the two or three children I had hoped for. That said, I am very grateful to have had one child – there are so many women with this condition who have not been so lucky.
Aisha Timol is a freelance communications consultant and mother to a beautiful four year old girl. She lives with her partner, daughter and two cats in Western Australia and loves to walk along the coast with friends, eat chocolate from her secret stash and sleep as much as she can.
How often do you think about your fertility? Have any of your friends or family gone through menopause earlier than they expected?
Top Comments
After trying to conceive for over 3 years we finally went and got checked out. Firstly my husband has a severe low sperm count - which can only be overcome with ICSI.
Secondly, while having tests for IVF suitability, my AMH test came back <1.0 pmol/L - undetectable, indicating failing ovulatory reserve.
We rushed into ICSI right away and completely defied the odds by becoming pregnant on the first round.
Unfortunately, I still feel shocked, bitter, like a freak.
My RE tried to reassure me that 'it will be OK if you go through menopause while pregnant'. I'm not sure if she meant that I could use a donor next time or if she meant that the menopause wouldn't hurt my baby.
I feel like I should've known - like I did know - I've been having perimenopausal symptoms for years. I just thought I was being a bit of a hypochondriac.
Although I am grateful that the IVF worked, this experience has really created a crisis of self - I no longer believe in a higher power, life seems random and unfair (not just for me but for all other women going through this). I wonder how this happened? Do I have a more serious condition that caused this? Surely there must be a reason, a cause?
I also feel very very isolated now. I'm not sure how to feel normal again or if I will ever be able to. People don't understand why I'm still angry - I mean who cares if your 'womanhood' is now over and your turning into an old lady right?
My goal at this point is to try and get past this quickly so that I can maybe enjoy the other part - the part where I may have a new little person coming into my life.
I will get over this, but I won't forget it.
I'm unsure if you will ever read this as the article is from 3 years ago. I hope all went well with the IVF and your pregnancy.
A few months ago, I had - at 35 - results showing a low AMH of 3.6 and an AFC of just 4 (2 each side). After much grief, and a LOT of non-stop reading it was important for me to know why, as well as my options. At my third specialist I asked "WHY? Why is this happening to me?" No other symptoms, and still ovulating with normal FSH levels.
I was sent by my specialist for - am now awaiting in results of - a blood test for Fragile X (FX) and chromosomal abnormalities. I only just learned about 'Fragile X' about a months ago when Googling, and I have no idea why it isn't far more widely known and spoken about.
FX syndrome (or FXS) is the primary cause of intellectual disability, which is has affected a few relatives on both my mothers and my father's side - other symptoms include delayed speech development (my uncle and cousin have this) and FX can also be related to heart murmurs (which my grandmother had). Female carriers of FX can have related Primary Ovarian Insufficiency (POI/ FXPOI).
Putting the dots, together, I wonder if this is what is going on. It won't change things for my own current egg situation, but at least I will have an answer and not think I could have lived my 20s any differently, like walking away from the 'wrong' man to have embarked on a family with back at 26, instead of now being with the wonderful man I am with today. It would remove the potential for past regret.
Also, it will explain so much of the officially un-diagnosed family history which we just accepted as 'simpleness' or mild-moderate intellectual disability, and socially high-functioning autism, and which we thought was getting 'diluted' or 'bred out'. This would actually be untrue, it would just be dormant until the next round pops up.
If my results come back positive for being an FX with the risk of passing it along, embryos created via IVF can undergo PGD or PGS to screen out FX. I know that living with inter-generational intellectual disability has delivered much heartache, financial and social hardship and dysfunction for my family for over 100 years at least - that we know if anyway. I'd hate to pass it on if it could be avoided. But is really needs to be publicised much better, including for family planning. A moth ago no one in my family had ever heard of it.
Screening for FXS or FX carrier status can be undertaken prior to pregnancy or early in pregnancy, and gives people information about their risk of having a child with FXS. People who have a relative with FXS or another Fragile X-associated Disorder have a higher risk of being a carrier of FX than most people.
Carrier screening is also relevant for people who do not have a family history of FX because many people who are carriers of FX do not have anybody in their family who has FXS or another FX-associated Disorder. It is estimated that 1 in 170 women and 1 in 800 men are carriers of FX.
Women who have FX carrier status are at risk of having a child with FXS. Men who have FX carrier status do not have FXS children but pass the carrier status on to all their daughters.
I would be interested to know how many women would have their eggs frozen if they had an indication of lower-than-normal ovarian reserve? If I had known back in my 20s that this was going to happen and I was single or not wanting to be a parent at a young age, I think I would have opted to freeze my eggs. I know that the success rate of later fertilising and implanting a pregnancy using eggs that have been frozen isn't great, but still...