Unless you’ve been through IVF yourself, it’s almost impossible to understand what it’s really like.
People see the injections, the appointments and the procedures. What they don’t see is everything else. Everything below the surface that’s hidden from most, but always there.
When we asked the Mouths of Mums community what they wished people knew about going through IVF, they told us about the loneliness. The endless waiting. The way IVF can slowly take over your life and become your identity. The friends who stop asking how you are. The well-meaning words that hurt more than people realise.
And the brutal truth that after all of it, IVF still does not guarantee a baby.
IVF does not guarantee a baby
This was the message that came through more than any other.
People often talk about IVF as the next step when someone struggles to conceive. But every stage brings another hurdle, and there’s no guarantee you’ll make it to the next one.
Follicles do not necessarily mean eggs. Eggs do not necessarily mean embryos. Embryos do not necessarily mean a pregnancy. And a positive pregnancy test does not always mean you will take a baby home.
“Sometimes you can do everything right and it still may not work,” Peta Philp-Shave said.
Sarah-louise Tangney put it simply: “Eggs don’t mean babies. Only the lucky ones get pregnant first go.”
Tayla Justine explained just how many hopes can be pinned on numbers that may ultimately mean very little.
For some, one of the hardest things was discovering how long the journey could take.
“It could take years to get a baby, or not at all, even with “mild” infertility factors. The mental toll of it is excruciating. You may also have multiple miscarriages or chemical pregnancies,” Rochelle Lupton said.
Kelli Kirby has seen both sides of the process, as an IVF patient and a nurse working in the field.
“It’s not a guarantee. The amount of people thinking the chances were really high versus what the actual chances were was very high. It was heartbreaking. Literally people come in saying oh I will just freeze my eggs for later when I want a baby. Well…. It’s not that simple a lot of the time.”
It can become like another full-time job
There are the parts of IVF most people know about: the injections, egg collection and embryo transfers.
Then there is everything else.
The blood tests. The scans. The phone calls. The paperwork. The appointments. The medication that has to be taken at exactly the right time. The leave from work. The waiting for a period, waiting to ovulate, waiting for results, waiting to find out whether an embryo has survived.
For some, the sheer amount of life admin involved came as a shock.
Kelly Keen also wished people understood the time commitment involved.
“The time commitment!! Blood tests, appointments, scans, procedures, tests…I don’t know how I would have done in a job with a boss that wasn’t my mum! Cause she let me go when ever I needed.
“Also a lot of it is waiting around. Waiting to ovulate… Waiting for period… Waiting for results.. Etc etc.”
For many people, IVF makes the rest of life almost impossible to plan.
The mental toll can be harder than the physical toll
The injections hurt. The medication can cause side effects. The procedures take a physical toll.
But again and again, mums told us the mental and emotional impact had caught them most off guard.
“The medical protocols and all the injections are nothing compared to the mental strength you’ll need to get through all the failures,” Addy Deet said.
Carly Denyer described it as “the loneliest, most stressful, mentally taxing time you will ever have.”
Kasey Smith described the emotional contradiction of trying to hold onto hope while preparing for more heartbreak.
“Be prepared to have your soul destroyed but also have faith that it may work. It’s like balancing on a tight rope.”
For Sarah Walker, the mental spiral included constantly wondering whether she could have done something differently.
“The mental spiral that can happen. The constant wonder if you had of done something different and even though you know it’s nothing you did wrong you still find blame on yourself.”
Even the needles themselves can become harder as time goes on.
“You get needle fatigue. I didn’t mind doing the needles it just after a while it became a mental challenge of its own,” Francine Dixon said.
And for those who endure cycle after cycle, the impact can be enormous.
“The emotional toll is absolutely enormous and Id have to say definitely under estimated by most of us when we begin. (7cycles to get first bfp and 2x ivf bubs now),” Stace Jean said.
IVF can slowly become your whole identity
One of the most powerful themes to emerge had nothing to do with needles or procedures.
It was the way IVF can slowly take over everything.
“It isnt just about doing IVF, its how it consumes your entire life and becomes your identity. And the immense sacrifices you have to make in every other aspect of life to be able to do it,” Corrina Lintern said.
Stephanie Bray described becoming so focused on IVF that “nothing else matters”.
For Laura Cassimaty, years of treatment changed the way she saw herself.
“Sometimes the world around you becomes so distant that it makes everything too far away. Sometimes you look back at your Instagram after 4 years and you don’t even recognise the person you are scrolling through.”
It’s why one mum offered a piece of advice that had nothing to do with treatment.
“Live your life while going through it, don’t delay the good times moving, holidays etc. do not pause your life!!!!” Vikki Tweedlie said.
Please don’t stop asking how we are
IVF can be incredibly lonely.
Even with a loving partner, family and friends, many mums said there were parts of the experience they felt they had to carry alone.
Many also told us that support slowly disappeared the longer their journey continued.
Meg Em shared a similar experience.
“It’s a long and lonely journey. At first people want to know all about it and then it gets too much for them.”
And Bek Bennett summed it up in just five words: “How terribly lonely it is”
For Carly Denyer, the biggest piece of advice she could give someone going through IVF was to talk.
“Talk as often as you need to. Don’t keep it from your village, they will be your strength.”
Please stop saying these things
Most people want to help.
But when someone is going through IVF, even words meant to sound positive or reassuring can cause enormous pain.
“I also wish people knew not to say that “relaxing” will help you conceive. If I’m going through IVF, relaxing is not going to make me ovulate,” Jacinta Thérèse said.
Many mums also wanted people to understand that starting IVF does not necessarily feel exciting.
“IVF isn’t some thing to be congratulated about,” Marie Lee said.
Renae Bowell agreed.
Jen Kolver shared the things she wished people would stop saying.
“Things NOT to say:
“”How exciting” – please don’t make assumptions about our emotional state.
“”You only need one” – this was said to me after all 5 of my embryo’s slowly dropped off and left me with only one viable embryo. I was grieving the fact that even that one did work I’d still need to do the whole thing again to give them a sibling. I also needed someone to stop trying to make me think and speak positive and hold space for the real fear and anguish that I needed to process before I could learn into hope.
“”Are you pregnant?” (Or just assuming I am). Asked this multiple times during egg collection when I was significantly bloated and looked about 20 weeks pregnant. Never ever ask someone if they’re pregnant or assume. Just stop. Don’t do it.”
Bel Morris had another to add to the list.
“And when people used to say “you can have one of mine” 🫣”
Sometimes support does not mean finding the perfect positive thing to say.
Sometimes it means allowing someone to feel scared, angry or heartbroken without trying to talk them out of it.
It can test your relationship
IVF does not happen in isolation.
The stress, grief, hormones, financial pressure and clinical nature of trying to conceive can put enormous strain on a relationship.
Hailey Tallarida said she wished people knew “That it truly test your relationship and how much time you need to take out to do the blood test and appointments”
For others, the damage could last much longer.
“Sometimes your relationship becomes so broken and they blame it all on you because you’ve been the emotional rollercoaster,” Laura Cassimaty said.
IVF can affect both partners deeply, and several mums wished more people understood how differently each person may experience and respond to the process.
The cost is emotional and financial
IVF can be expensive. But people pay for it with more than money.
“It’s waaay more expensive than you think it’s gonna be if things aren’t successful straight away,” Tania Anthony said.
One mum shared that it took 10 embryo transfers and nearly $75,000 before she had her baby.
Shari Ford compared the process to gambling.
“It’s like gambling. You throw a lot of money at it. Your odds at winning first round are really not great and the build up to winning is emotionally taxing. Then if you are lucky and win you feel elated , but sometimes you lose it all so you start again. A few get lucky and win, sane as gambling but many fail too.”
People pay for IVF with sick leave, missed work, postponed plans and years of their lives. For some, it also takes a toll on their physical health, mental health and relationships.
There are triggers everywhere
A pregnancy announcement. A baby shower. A child’s birthday party. A casual question from a stranger.
For someone going through IVF, everyday moments can suddenly become painful.
Peta Philp-Shave wanted people to know it was OK to protect themselves.
“If you don’t feel like going somewhere that has children don’t go and don’t feel guilty for it. It’s ok to be kind to yourself and its ok to reach out for help there are far more people that have the struggle than you realise.”
It is not about being bitter. It is not about feeling unhappy for someone else.
Sometimes, it is simply about getting through the day.
Even success does not always erase the trauma
For those who do eventually have a baby, the emotional impact of IVF may not disappear with a positive pregnancy test.
“IVF becomes your identity, and the trauma takes a long time to get over.
“My son is 2 now and I am still struggling,” Nik Perrilinkle said.
For others, fear follows them into pregnancy.
“Sometimes when you actually fall pregnant and you want to be happy you cant because youre waiting for the next disappointment so you are protecting yourself,” Laura Cassimaty said.
After years of waiting for bad news, many people struggle to believe the good news will last.
What people going through IVF want you to know
There is no single IVF experience.
Some people fall pregnant on their first transfer. Some go through years of treatment. Some experience loss after loss. Some eventually have the baby they have longed for. Some never do.
Perhaps that is the biggest thing to understand.
IVF is not the easy way to have a baby. It is not a guarantee.
And for the people going through it, the best support may not be advice, forced positivity or promises that everything will work out.
It may simply be continuing to ask how they are.
Listening to the answer.
And staying, even when the journey takes longer than anyone expected.
What do you wish people knew about going through IVF?
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