If you google 'support during IVF' (at least from my computer) you get about 19,800,000 results. Scrolling through the first page of these results sends you to the big IVF clinics nearby first, who have probably paid for google ad words and want to capture the people who are searching for anything related to IVF and funnel them into treatment.
You also get a couple of scientific articles talking about luteal support during IVF treatment which is not the kind of support I am talking about here….
Then there are a few government and regulatory bodies like VARTA (Victorian Assisted Reproductive Treatment Authority - State of Victoria in Australia) and SART (Society for Assisted Reproductive Technology - USA)
and finally, a few health and wellness type websites and a few personal blogs…
If you do a Google Scholar search (the kind of search that takes you through the peer reviewed journal articles on a topic), then you will find 2,900 results, only one of which was published in the last 12 months. I have taken a screen shot of the conclusions made by the article below, but the article has subsequently been withdrawn. This article looked at how people search online for information and the kind of information they are likely to find when they do those searches, and how beneficial it may, or as it turns out, May NOT be….
OPTIMIZING UTILIZATION OF EMOTIONAL SUPPORT DURING INFERTILITY
TCA Hussain et al
"Patients seeking answers in the infertility treatment forum received no assistance half the time, and only a third of responses were deemed medically accurate"
There have been a lot of articles over the years which have found that the stress associated with fertility treatment doesn't impact outcomes, but rather; it impacts how long people will continue to have treatment, and that it is THIS that impacts the outcomes.
Most clinics will present a statistic along the lines of "80% of people having IVF will conceive after 3 cycles of IVF" which sounds great in theory.. 3 cycles - that's three months - let's do this!
But the confusion comes with the definition of the word 'cycle' which seems to depend on where the word is being used. In this instance, it refers to a fully stimulated egg collection cycle. So ONE CYCLE would involve the egg collection cycle as well as any subsequent frozen embryo transfer cycles associated with that egg collection cycle. So for women who have 10-15 eggs collected, with 5-10 embryos making it to day 5, that could mean upwards of 15 embryo transfers to get one baby... a LOT by anyones definition... and most certainly a level of stress that most people cannot fathom.
So, in my work, what do I find??
I find that people have QUESTIONS!! So many questions!! People are leaving appointments with questions they are afraid to ask. They are googling before they even get to their car or to the tram.
They may or may not take notes during their appointments with their fertility specialists, but more often than not, they leave feeling overwhelmed with information and having heard only a fraction of what is said to them - let alone the details that are not discussed.… so they google….
22 years ago, when I started my training as an embryologist, healthcare was quite different. Quite simply, people consulted medical specialists and followed instructions - aside from visiting the local library and borrowing a mountain of books and then wading through them looking for information that suited their situation, they really had no choice.
They may, perhaps, have consulted a friend or family member who had been through whatever they were going through themselves, which was fine if they were having a knee reconstruction, or an ingrown toenail removed… but when it comes to fertility - people didn't tend to share their fertility journeys quite so easily back then and tended to keep this information to themselves.
So they trusted their healthcare professional - in this case, their fertility specialist.
They didn't really understand the process, but they knew that they had chosen a good specialist, and a good clinic and that everyone had the same end goal - a healthy baby!
In some ways it was easier not to really know what was going on - you didn't know what you didn't know and you just trusted your specialist and their team to provide you with the best care available - you knew they were experts in their field, and even if you didn't really understand what they were doing, you followed their advice and hoped for the best.
But now.... we google...
We have access to an insanely ridiculous amount of information in our pockets and in our homes - the internet is awash with forums, websites and social media, where we can share share share, anything and everything.
This has definitely helped to remove the stigma of fertility treatment and reduce the 'shame' and isolation that people going through Fertility treatment (Assisted Reproductive Technology – ART) may experience - and I'm absolutely 100% sure that's a good thing...
but what it has also done, is open an entire universe of questions.
In general health, it is quite normal now for patients to book an appointment with their GP having already completed a thorough google search. They have mostly diagnosed themselves, and now they just need a prescription and a medical certificate.
We don't trust our doctors in the ways we used to, we second guess them, we want all the details and all the options - and we know there are options - we’ve already 'done our research’!!
We leave their consulting rooms, and we google before we've even got home....
Now don't get me wrong, information is great! But the trouble with this kind of information is that unless you are experienced in reading scientific and medical articles, it's hard to have a filter for what is being read. Where is the information coming from? What is the ulterior motive of the person (or more often than not, the business) that has provided that information - everything that is written on the internet is filtered through the experience of the writer, and everything we are reading is being filtered through our own experience.
Reading blogs, forums and newspaper articles and listening to podcasts from different countries, different cultures, and different situations and then attempting to apply them to our own situations, when perhaps they are just not appropriate.
and the media LOVE fertility! every day I get a google alert with anything that has been published on the internet that mentions IVF and fertility, and everyday there are at least 10 articles in that alert. Most days there is at least one article about things you are doing wrong with your fertility, questions to ask your fertility specialist, something you may not have even considered to be an issue, or that somehow-or-other plants the seed of doubt that perhaps YOUR FERTILITY SPECIALIST may not have considered something that MIGHT make all the difference to your outcome - further undermining the trust we have placed in the people we need to help us.... 22 years ago, you couldn't just go home and google these things.
As a culture, we are now so used to having all the information, doing all our own research and then getting a specialist in to do the actual work - if you run a home, you are expected to know and understand plumbing, electricity, small machinery maintenance, phone and internet connection just to name a few…. and if you have a garden too - well then you will need to know and learn about fertilisers, seasonal planting, bugs you want and bugs you don't want, mold and funghi etc etc etc...
and if there is something we can’t fix ourselves... like if your toilet blocks up and you can't fix it, it's quite reasonable to pay a plumber to come out and help you - you don't really understand what they do, but they make it better and you pay them upwards of $150 for their time.
Likewise with your car - $500-$1000 for an annual service is normal, acceptable and to be expected... if your car makes a funny noise - you take it to a mechanic, and they fix it. Most people will probably research WHICH mechanic they take it to - but once they have chosen, they are not likely to spend much time googling what that mechanic might actually do and what they could or should do differently... they just trust them to do the job.
but with health, it seems quite different... people come with their 'research'...
There is one big difference.... there is usually a clear pathway to fixing your car, or your toilet... X + Y almost always = Z ... Outcomes are usually pretty clear and pretty easily predictable.
With health, and with fertility treatment in particular, the pathways are much less clear, and the outcomes are totally unpredictable. The desired destination is easy - a healthy baby... but there are many ways to get there, and even with the very best map, there are a portion who may never make it.
As a culture, we are so used to saying, 'if I follow that path, then I will end up at that destination', but in fertility treatment, that is just not the case. 10 women can head down exactly the same path, with exactly the same equipment (reason for infertility) and exactly the same map and backpack (treatment plan), and statistically, 3 or 4 of them will reach the destination and 6 or 7 of them will not… and more often than not, there is no way to explain why... we have ideas, we try new things... but there are no absolutes.
People don't go into fertility treatment expecting to second guess their specialist, but by the time they reach a specialist, they have usually been through several months if not years of 2-week blocks -
The first block: Day 1 - ovulation - first the devastation of ANOTHER period, another let down, what did I do wrong this month?? Did we get the timing wrong? Am I not fit / healthy enough? Should I be eating more / less of *insert latest fad*.... and then the building up into the opportunities this next cycle offers - I'll be healthier this month, I won’t drink, perhaps if I cut out coffee that will do it, maybe what I read about pineapples is true - I'll do that this month, I obviously need to lose a bit more weight / eat better / be healthier / be more relaxed... usually around 2 weeks of waiting for ovulation - perhaps using ovulation test strips, perhaps monitoring basal body temperature, timing intercourse, planning social functions and work around fertile days
Then Ovulation! yay!!
Then there's the second block: Ovulation to Test Day - The dreaded two week wait #tww - is this the month? When should I test? Is it too early? Is that a twinge? Difficulty focusing at work, dreaming and hoping that this is it... chronic symptom spotting - am I weeing more than normal? Am I extra tired? What does google say about early pregnancy? What colour should we paint the nursery? If I'm pregnant this month then the baby will be due in *insert month here*, so it will be ready for school in *insert year here*, I wonder if we should plan that trip or not, if I'm pregnant this month, then I will be X months pregnant then - should I say I can go to that wedding or not??
And then the letdown… the absolute devastation of your period arriving again – often at the very moment you’ve decided that now is the time to do that home pregnancy test…
So, then you’re back to Block 1 again...
the letdown... the buildup... the anticipation... the doubt...it's exhausting...
Now imagine that 24 times.... 12 months of 'trying'.... Imagine the mental state you might be in after that kind of roller coaster… all whilst fending off well-meaning questions from family, friends and even work colleagues about why you haven't started a family yet or maybe added to your family yet... some, also well-meaning, but completely unhelpful ‘advice’ about what you could do to make it happen – ‘just relax’, ‘go on holiday!’ or even: ‘my friend’s cousin just did IVF and now they have 3!’
and then add in a smattering of pregnancy announcements, magazine covers at check outs with pregnant bellies and celebrity babies, and baby bumps that suddenly seem to be everywhere you look...
And all of this BEFORE you even get to a fertility specialist!
The definition of infertility is 12 months of unprotected intercourse at the right time, and in Australia, Medicare will only fund fertility treatment if you fit these criteria. Obviously, it's very hard for anyone to check how long you have been 'actively trying', but 12 months of this (roughly) 2 weekly rollercoaster is A LOT! - especially in today's society where we are so used to getting everything *NOW*
The idea of waiting 12 months before seeking help is virtually impossible, so people start to seek help and information where they are comfortable - on the internet... and the information they find is not always useful to them!
By the time they get to a fertility specialist within a fertility clinic - they have probably already seen at least 2 or 3 other 'specialists' - perhaps a herbalist, a naturopath, perhaps had some acupuncture, maybe seen a kinesiologist, a chiropractor... the list goes on - people want to solve their own problems - they take their fertility on as if it's something they have done wrong, or they 'deserve' because they're not healthy enough / fit enough / don't want it enough / want it too much / just need to relax...
Then add in the business aspect - when I first joined this fertility field, there were no business managers, no 'bottom lines' and definitely no shareholders and dividends to be paid... just Doctors, Nurses and Scientists working together to achieve outcomes and marvel in modern science!
These days, most fertility clinics are owned by investment groups. They have boards and shareholders who want dividends.... so, with that comes the question of outcomes -
Depending on who you ask in the clinic - the desired outcome might be different… not for your individual cycle - obviously everyone wants you to have a baby.... but some people within the organisation might also want to be the 'first' with some new technology (it's good for PR), or perhaps they want to have the 'most' cycles (again, good for PR), the 'biggest' clinic, the 'latest' equipment, the 'best' statistics, the most investors (which incidentally brings the most money, which leads to better research which could potentially lead to more babies)... but there is the potential for people to lose sight of the individual... the individual who has spent months and sometimes years, riding the 2 weekly rollercoaster BEFORE getting to a Fertility Clinic… then months and sometimes years riding the ART roller coaster... never quite sure if what is being done is really in THEIR best interests, or just in the best interests of the Dr / the clinic / the shareholders...
So, then we're back to googling, second guessing someone who spent more than 12 years at university and someone you have chosen to help you - you read something on a forum somewhere that helped 'Sarah' from some far-flung place who had 6 failed cycles and then did this *one thing* and got pregnant so you want to do that too!
There is so much about fertility that we still don't understand, and that we cannot control and in a society full of control freaks... that's challenging.
As professionals within the fertility world, we love to focus so much on the science and the medicine - we love the bits we can measure and control and document and calculate...
But what about all the stuff we can't? at the very least, we need to acknowledge this enormous aspect of what we do, we need to try to explain to our clients that we can’t solve everything, but that we can do our very very best with the information we have available to us right here and now, and then we can provide them with the very best support throughout their treatment that takes all of this into account.
Are we ready to 'let go'?
What kind of support does your clinic provide? In Victoria (Australia) we have mandatory counselling prior to starting IVF
But is that enough? My clients tell me that their time with the fertility counsellor within the clinic is mostly taken up with completing reams of consent forms rather than actual support.
A Fertility Nurse is trained to provide this support
A Fertility Specialist could too
but the professionals within the clinics are so time poor and under so much pressure to roll the patients through that they often just don't have the time to devote to giving the kind of support that patients really need...
Friends who have been through it could help....
There are plenty of support groups out there too, and fertility coaches as well - but there is the risk that these are really just a heap of semi-qualified people speaking only from their own experience and trying to validate their own choices by convincing others to make the same ones...
I suggest that independent support is where it's at – someone not linked to the clinic, with no ulterior motive, educated, experienced, connected and able to liaise with the specialists, but also provide another view, an independent perspective in a non-confrontational setting.
Helping clients to feel calm, empowered and at the centre of their care. To have access to education to be able to understand their treatment, understand the aspects of their care that CAN be calculated, measured and controlled, and tools to manage the bits that CAN’T be.
Independent Fertility Guidance and Support is where it’s at.
Would you like to chat with Lucy about this article? hit this link and book a time to talk
Lucy Lines
B.Ag.Sci., Dip.Repro.Sci
Embryologist, Fertility Educator,
Fertility Advocacy and Support
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