14 Things I Wish I Knew When I Started IVF

I’ve been through three rounds of IVF. You can learn more about my journey here, here, and here. As we consider our options for a potential round four, I’ve been reflecting on my experience. Here are a few things I wish I would’ve known when I started this journey over five years ago.

Discuss multiple rounds of retrievals early on.

I did not know, what I did not know. Naively, in our first round of IVF – I truly thought frozen embryos = future pregnancies. In 2016, our medical team did not heavily recommend genetic testing. So, we did not do it. We were incredibly blessed with a healthy pregnancy after transferring our first 2 embryos together. Because of that success, I naively assumed the frozen embryos would also have similar results. They did not. I now know – they transferred the BEST-looking embryos & gave us our best odds right away. I’m so glad they did that, BUT, I wish I would have known more about this process.

It’s hard to say I should have done this or that back in 2016 – because if I had done multiple retrievals before a transfer – who KNOWS what the result would have been. My first transfer gave me my son, Roux, and I would not change that for the world. BUT, I wish I would have had all the information to make an informed decision back then. I may have chosen to do multiple rounds of stimulation and retrieval to freeze healthy + genetically normal embryos when I was YOUNGER and had a higher ovarian reserve. By the time we were ready to transfer more embryos – it was 3.5-4 years later, frozen embryo transfers failed, and then we were faced with doing additional stimulation and retrieval rounds anyway – but this time, 5 years older.

I wish I would have forecasted 5 years down the road and talked about the odds of pregnancy with just one round of IVF – and had the information I needed to decide if multiple rounds as a younger woman would have been smarter for me.

Choosing not to PGT test now really locks you in with those embryos that are frozen.

We had a 4-year gap before we were ready to consider another embryo transfer. It’s not advised to thaw an untested embryo to then send to genetic testing. Plus it’s expensive. In hindsight – I wish I would have genetically tested the embryos from our first round – so that I had a more realistic expectation of pregnancy odds with each transfer.

Hurry up and wait.

You are always waiting on something. Each doctor has a different protocol of course – but when you are READY for IVF – you usually are ready, like yesterday. But you have to wait for things like your cycle to start. Then, in my case, even when my cycle starts – it still isn’t GO time. My clinic likes me to be on birth control before starting the stimulation. This can often be a 6-8 week process. That isn’t easy for women in our situations. But, prepare to wait.

Fertility treatments will become the primary focus of your life.

Your calendar will literally revolve around appointments, cycle days, and the timing of medications/injections. All of this is doable, but it’s something to be aware of.

I’ve brought my medications/syringes on flights, to a monster truck stadium, left work events early, and snuck away into public bathrooms in order to stay on time with medication protocols. It’s very doable. But, it’s an extra thing. Traveling during stims is just not possible because of all the labs and ultrasounds. So, just plan your schedule & avoid big trips. Always be upfront with your clinician team about upcoming travel dates & make sure nothing will conflict. And even when you communicate well, be prepared to modify your plans, fly home early, or cancel.

Your body will feel different.

It becomes very obvious early on that your body is not just your own – but a part of a delicate process for a bigger goal. Everyone is a little different, of course. We all respond to medications differently. We will have different types of drugs in our bodies at all different doses. Our lifestyle choices up until now will vary. The way we cope with stress will also vary. My main symptoms in all of my rounds of IVF have been fatigue and headaches. Some have much more intense side effects, and some have none.

Keep the lines of communication open with your partner.

Try to be upfront and specific with the things you feel you need – whether they be for support or physical help. Talk about little or big ways you and your partner can be a team in all of this. Some partners are in charge of injections. Some may take on cooking responsibilities. Or maybe you just create a little extra wiggle room for naps or extra sleep on the weekends if needed. The main thing is to keep communication open – and if you can think of a way they can be helpful in this temporary season, just ask.

Be 100% honest with your doctor.

If you are worried about something, ask. If you are unsure about your protocol, speak up. It’s so important to advocate for yourself – and a lot of times, that simply looks like listening to your intuition & being courageous enough to speak up. You do not have to say YES to everything. Just because you ask questions, does not make you a difficult patient. It makes you an involved human – who has thoughts of their own. It’s ok to continue to seek understanding & make sure you are comfortable with the choices made.

It’s a different journey for everyone.

The virtual support world for fertility is actually quite wonderful. The only problem – there is a lot of comparisons. The story swapping can be very helpful. The problem starts when you start to expect your experience to be like anyone else’s. So, find that balance. Be encouraged by other’s stories. Remind yourself often that everyone is different, every clinic has differences, your response may be different, and your results surely may be different. If these groups bring you to a place of comparison too often – consider other ways to be supported. 

ADVOCATE FOR YOURSELF.

This is my most important piece of advice for you. This is a time in your life where you simply must speak up for yourself. You must advocate for yourself. You may have a wonderful experience with your medical team – or, you may not.

My first IVF clinic was VERY hands-on. My second clinic was TERRIBLE at communication. This drove me crazy – but eventually, I had to learn ways to speak up for myself and tell my medical team what I needed. DO NOT BE AFRAID to be the “squeaky wheel.” This is a very emotionally charged journey, this is an expensive journey, and this is a very TIME SENSITIVE journey. Communication is tough in my current clinic. It doesn’t necessarily mean I need to find a new clinic – but, it does mean that I need to be ok with being more proactive & not waiting for the clinic to take on that role for me. It’s important that you decide what is best for your family & it’s possible that you may need a more personal connection – requiring you to switch clinics.

Be proactive. Ask questions. Call again if your emails are going unanswered. I KNOW it can be tough to feel like “that patient” – but there is a way to speak up respectfully! You’ll be glad you did.

The shots aren’t as bad as you think.

No, really, they aren’t.

Especially during stimulation. The needle is tiny. Most people are not used to daily injections – so yea, that takes some getting used to. Will you be bruised & sore? Maybe. But the actual poke is not too big of a deal. Progesterone is definitely a more serious injection. But, with practice for technique – it’s all very doable. Don’t be afraid to ask your nurse for more guidance for you or your partner if needed. And, don’t forget that YouTube is an endless source for help and tutorial. The biggest mistake I see people make, especially during Progesterone injections, is injecting the needle slowly. WHY ON EARTH WOULD YOU DO THIS? No. Stab like a dart. You are making it  MORE PAINFUL by stabbing slowly, trust me. Swift and to the point – and get it done. Your body will thank you. [I’m a retired nurse if this helps you believe me at all].

Also, there is always the auto-injector if it comes down to it!

The amount of support you need may vary.

For some, who have chosen to share their IVF journey publicly – you may receive tons of encouragement and support. For those wanting to be more private – that may be more limited. What I think is most important is the quality of support – not the quantity.

Let’s say you choose to remain private about your journey – but your spouse, your sister & your best friend are there for you with quality support – well, that may very well be exactly what you need! For others, they want to be all-in with the fertility community, have lots of friends in similar seasons of life, lots of understanding. That can be helpful too. Or, it can be overwhelming. Another factor in this is how long your journey lasts. For some – it’s a short time before treatments result in a healthy pregnancy/delivery. For others, years go by without the results they are hoping for. It’s ok to ask for the support you need in the season you are in – and it’s also ok if that level of support changes are your journey continues.

Expect people to say thoughtless, ignorant, or hurtful things and know that they need grace.

You don’t have to be the one that teaches them the right way to talk to people going through this. But, come up with a go-to thing you say to people when they get under your skin or hurt your feelings. “I know it’s tough for people to understand when they haven’t gone through this personally. It’s a lot.” “My doctor and I have discussed my treatment plan & there’s a lot that makes each person’s situation unique. Thanks for thinking of me though.” “Thanks for understanding, I’ve actually decided not to go into detail on this.” “You know, I get it that you don’t get it – but there’s a lot more to it than that. My clinical team has it under control.” Make your own go-to statements and save them in your NOTES section on your phone, just in case.

[ Here are my tips for supporting someone going through IVF. Send to friends and family! ]

You are stronger than you think you are.

No one wants to do IVF. But, it’s in the fire that helps us to see what we are made of, rather, what God can do in us & through us. Our fertility journey has been full of ups & downs. The longer we were in this unwanted “club” the more I leaned on the Lord, his promises, and surrendered to Him as I walked our path. While we do not have the strength, alone, through Christ all things are possible. The more we draw near to the Lord, we will see that his strength is made perfect in our weakness.

He DOES have the strength for endurance. The Lord DOES have joy during struggle. He will provide according to His will – and our job is to trust that, have faith, stay in prayer, and fill our hearts and minds with the truth from the Bible. We are not capable on our own. It IS a weary journey. There WILL be ups and downs – but, you will look back and see all the ways the Lord gave you strength, taught you, stretched you, and developed your character – even through the toughest times. I can’t say I always understand the WHY – but I know that I serve a God who cares about the details of our lives – and my faith has only been strengthened in our journey. For that, I am extremely grateful.

IVF is expensive.

Some insurances cover fertility treatments. Mine does not. I was a military dependent in my first round of IVF – no coverage. These last 2 rounds – even with different insurance, still no coverage. Everything adds up. Extra for meds, anesthesia, genetic testing, and for embryo storage. So many couples draw the line at 2 cycles because it can be so extremely expensive. Prepare in any way that you can. Have conversations with your partner about financial boundaries or what can be done to save money for these treatments. Will we look back in 10 years and regret spending the money? Or will we regret not trying? That is going to be different for everyone.