'It can kill friendships.' What no one tells you about IVF.

Infertility is complex. 

Headlines and TV shows put a spotlight on fertility issues, but don’t always provide deep insights or realistic expectations. The experience is not the same for everyone and we often only hear success stories, which can be misleading. 

Mine is now one of those stories - but it is not without complication.

Here’s what more than a decade of infertility taught me, and why I believe that presenting the full picture is important. 

It's a long and winding road.

Don't let the feel-good stories fool you - it can be a long road before people get to IVF and a bumpy one afterward. Starting in 2011, we did 18 rounds of assisted fertility, including seven of IVF. We stopped and started treatment but took no precautions during that time. To us, that felt like 17 losses and hundreds of failures - I once did 40 pregnancy tests in 97 days while waiting for my period.

Watch: Tanya Hennessy opens up about her fertility issues on The Project. Post continues below.

We spent nine years thinking only I had fertility issues (PCOS), then pre-genetic testing in 2020 revealed that my husband did, too - and the latter genetic carrier discovery had a far greater impact. It turned out we’d had almost no chance of ever achieving 'natural' pregnancy (PSA: all pregnancy is natural) and the body I’d been hating on had been trying to do the right thing some of the time after all.

The long and winding road doesn’t end with treatment either. When I eventually did fall pregnant, I had very challenging first and fourth trimesters, including a twin miscarriage and serious postpartum complications (luckily my second and third trimester were magic, I felt like a human-making sorcerer). People go through IVF just to get to the starting line; we don’t get a break or good run later because we ‘deserve’ it. We’re subject to all the other usual complications (sometimes more of them), and we’re often exhausted before the real work begins.

Not everyone gets their miracle. It’s often about timing… and luck.

Infertility affects about one in four couples, and one in six seek treatment. When you look at the credible, comparable data, not just what’s in fertility clinic brochures, around half of the people who start treatment will not be successful in their quest for children (note I didn’t say quest for a family, they belong to families already).

This data can include outcomes from people without medical infertility who utilise assisted fertility (eg. egg freezing) who typically experience shorter, and less invasive and expensive journeys, with better success rates, positively skewing the numbers. It’s good that people are taking proactive reproductive steps, but it’s important to understand the impacts. The industry is poorly regulated and for-profit; it sells 'potential' using variable information.

For us, it wasn’t the tea, vitamins or yoga. Our solution was a testing breakthrough, but it only helps people with genetic carrier disorders. (My husband is 1:1000).

It came down to timing and not fairness in terms of where the science was up to when we needed it, and plenty of people missed out or are still waiting for their breakthrough. 

For every person you know that fertility treatment has worked out for, there’s one for whom it didn’t.

Ten years earlier or later, we couldn’t have had our son, so to us he’s one in a billion. 

We’re the luckiest unlucky people I know.

It’s a confusing, time-consuming second job.

Fertility treatment takes up so much time with no guarantees. It can take months to start a cycle, you can have dozens of appointments, and it can take months to recover in between. And that doesn’t include managing any additional elements you might introduce (such as acupuncture, etc). It’s hard work.

Medications, schedules, results and sequencing can also be hard to manage, and mistakes are costly. There’s also a surprising amount of variance. We had five doctors across three clinics at two different fertility groups during our journey. I had 11 different types of medication (up to five at once, some taken three times a day), hundreds of needles and tests, and six operations/day procedures (three of which did nothing). I responded differently to the medications and operations each time, and the conditions and solutions kept changing.

The processes and systems also break down because they involve people. We’ve had doctors forget who we were, had wrong medication dispensed (which we picked up on), had our embryos sitting around idly when they should’ve been undergoing biopsies, and even cycles cancelled because of admin errors. Though I truly don’t believe it impacted us in the end, it might have cost someone else their baby.

It can be dangerous.

Fertility treatment can be dangerous. In 2014, I suffered from ovarian hyperstimulation syndrome (OHSS). Severe cases like mine are rare but can be fatal - a healthy 23-year-old died from OHSS in 2022. I collapsed at home and spent six days in hospital needing drains and IV treatment. I’d made more than 70 follicles containing 50 eggs, and my ovaries were larger than my bladder. It took months for my body to return to normal… it took years for us to go back to IVF. 

Physical risks are only half the picture. Recent studies are quoting alarming rates and rises in mental health impacts and suicidal ideation among women, in particular those undergoing treatment. While actual cases remain low (or causation is unclear), up to 30 percent of women said they occasionally had suicidal thoughts.

More than half the people who go through fertility treatment (including the successful ones) say it’s the worst experience of their lives and experience an increased likelihood of psychological disorders, loss of identity, loss of hope, guilt and shame. 

How we talk about this needs to improve. 

Listen to Mamamia's podcast for all things fertility, Get Me Pregnant. Post continues below.

It can kill relationships.

Infertile couples are three times more likely to separate, and there were definitely times when we each thought this would be the thing that ended us. When I look back now, I don’t know how we got through it other than with humour and resilience, but even that can be damaging, because for some people, the best but most heartbreaking decision is to stop. We paused treatment for years and only went back because there was new testing available - AND we put a cycle/time limit on. It was end game for us either way - and it went our way.

We’re both grateful for the learnings, but not everyone gets to have that perspective out the other side with a child and their relationship intact - and it doesn’t make those relationships worse or less deserving than ours. Be kind to the people who don’t make it, including to yourself if you were one of them. You didn’t deserve anything less: infertility and its impacts are indiscriminate. 

Friendships aren't immune either. 

We were accused of some ignorant, insensitive and (now) amusing things over our journey, including deserving infertility, being selfish for not having children (or stopping at one), having issues with other people’s babies and not being honest about our IVF/pregnancy journey (timing, motives, etc).

We eventually learnt that it wasn’t always malicious and was usually more a reflection of other people than of us, but it didn’t mean it wasn’t hurtful. Infertility is hard enough without guesses and assumptions weaponising it. It’s better to care and be curious - or say nothing at all!   

The true cost.

Though the direct financial implications associated with assisted fertility are becoming better understood, the true costs aren’t just the cycle fees - which are usually in excess of $10,000 and don’t include medication, scans and tests, bed (hospital) charges, additional consultation fees and travel.

We spent more on testing in one cycle than the actual embryo transfer (which attracted no rebate back then). A lot has changed since we started, but if I had to guess, I would estimate that around a third of our costs were outside the cycle schedule. 

Ultimately, many people stop (or don’t start) treatment because they simply can’t afford it. Though components are added to Medicare each year, barriers still exist because funds are usually required up front. Despite the majority of ours being out of pocket, we’re thrilled that help is no longer as prohibitive - this science changed our lives.

Despite the money being difficult to manage (and the cost of the car parking that somehow felt the most offensive), the mental and emotional costs were by far the worst. Until treatment worked, I felt like I’d been doing an expensive, injury-ridden extreme sport…  and losing.

Would we go back and do it all again? 

You bet we would, even just to hold our son once.

Could we do it again in the future? Not likely.

We’re extremely fortunate and grateful, but there’s a degree of trauma that sits with us from the experience, and probably always will.

Casey is a geriatric-mother, water-lover, mistake-maker, IVF-veteran, laugh-monger, gin-drinker, occasional-writer. She lives in Geelong with her family (where she’s outnumbered), and you can read more about her journey here.

Feature Image: Supplied.