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.
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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...