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Three things I learned while going through IVF…and wish that others knew…

Maya Shapiro | Oct 30, 2022 | Oct 30, 2022

I’ve blogged about my IVF story in the past, all during various stages of my fertility journey. While IVF will never fully be ‘behind’ me (can something so large ever be behind you?), there are enough years that separate me from my last medicated retrieval cycle to give me some perspective.

I hope these three things I learned while going through IVF  below serve as a reminder that IVF is never experienced the same for any two individuals – the journey and the outcomes are so unique to every patient which means that every spouse, friend, colleague, caregiver and community should understand this when providing support.

1.      There is no IVF stereotype

While my IVF story is certainly not unique, it is not typical. My husband is a carrier for the BRCA 1/BRCA 2 mutations; we therefore decided to do IVF with preimplantation genetic testing  (PGT) to genetically screen our embryos for the gene mutations prior to attempting pregnancy. Between graduate school exams and summer breaks, I did multiple IVF retrieval cycles to bank embryos for future use. I did shots anywhere and everywhere – in the middle of a friend’s bachelorette party, in-between class lectures, before heading out for date night. A few friends, colleagues, and other IVFers in the waiting room had a lot of questions: wasn’t IVF reserved only for couples who have been trying to conceive for over a year? Why would someone so young be sitting in the waiting room? I tried joining a few Facebook support groups (who doesn’t want to complain to hundreds of other women about the woes of Menopur!), but I felt like I didn’t belong. My journey was mine and didn’t seem similar to others.

I was lonely. I wish that my professor would have stopped looking at my stomach once he had found out that I did IVF in the middle of the semester (despite his assumptions, I wasn’t actively attempting pregnancy at that point). I wish friends knew that my first embryo transfer had the potential to fail (I was 26 with a healthy uterus. There was no reason for anyone to contemplate the possibility of failure). And when we had some medical setbacks when I returned to the IVF world for my second child a few years later, I wish that the online IVF community hadn’t felt the need to remind me that I should be grateful for the one child that I already have.

For better or for worse, I was not a typical IVF patient, yet I had my unique batch of medical setbacks and failures.

IVF for proactive fertility planning, IVF for non-standard diagnoses, IVF after chemotherapy, IVF after recurrent stillbirth – these stories are complex and nonstandard, but they exist. No two IVF journeys are the same and therefore no two patients can be supported the same way. And yet, there is room for all of us within the community. Get to know the complexities of our story and realize that while each person’s journey is uniquely different, our battle scars all look similar.

2.      IVF is no longer a ‘woman’s issue’

I have a love-hate relationship with IVF clinic waiting rooms and online blog forums. They fill me with hope for the future and sweet memories of how my daughter came to be. They also contain antiquated content and pictures. And that riles me up. The gendered language surrounding fertility conversations feeds into the infertility stigma that IVF implies female failure. And this must stop. Heck, I did IVF due to my husband’s medical complexities. And many may not be aware that male issues contribute in just as many cases as women to infertility.

Yet, pamphlets, online forums, and consent forms were heavily geared toward me, the one with the (assumingly bad) uterus. I understood that I would be the one going through the process, but that didn’t mean that my husband didn’t need the same amount of support and acknowledgment, too.

Besides, we are living in the year 2022: LGBTQ+ family planning is finally getting the attention it deserves. How can we make sure no patient is isolated due to non-inclusive IVF language and imagery? The way we talk about IVF and reproduction must consider the different individuals that may walk into the IVF clinic.

3.      IVF doesn’t end with a positive pregnancy test

I assumed that my IVF journey would end right after my embryo transfer in the form of a semi-hygienic positive pregnancy test stick. The truth is that my anxiety only skyrocketed during this time. I must have taken 20 over-the-counter tests over the course of four weeks to check that my hormone levels were rising properly. Then, after I finally got pregnant with my daughter, I woke up every morning in a state of semi-panic. I was no longer closely monitored by my fertility specialist but not yet out of the woods. I was in limbo – no one’s medical responsibility anymore, yet I was desperate for reassurance that everything would be okay.

It was too early to tell friends and family about the news, which only heightened my sense of loneliness. IVF doesn’t stop with a positive pregnancy test. I wish the few friends and colleagues who knew where I was in my fertility journey weren’t afraid to check in with me in the aftermath of IVF. Those first few months after embryo transfer can be brutal and lonely. If appropriate, a quick thoughtful note (or an anonymous apple cake dropped off outside the door) goes a long way.

As the patient, we often hesitate to share what is actually going on during IVF for fear of oversharing. Then the people in our lives tend to not do anything for fear of doing or saying the wrong thing. Open conversations about individual fertility experiences will help remove the stigmas, the fear and help spread understanding.