“what I wish I knew at the beginning of my infertility journey”

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I make no secret of the fact that we struggled with infertility. I think it’s safe to say that based on certain factors, at least for the time being, we still struggle with infertility. I’ve mentioned before that our son, Brecken, is the result of IVF. We tried three medicated cycles, three medicated IUIs (intrauterine insemination) and, finally, IVF with a fresh transfer of two embryos. One of those embryos stuck and grew into our sweet baby boy. We are so very fortunate to have had success with our first round of IVF, as so many others are not so lucky, but going through failed cycle after failed cycle made for a very emotional and stressful time in our lives. There were and still are many “what ifs,” as we don’t know what the future holds for our family. Unless you have dealt with infertility – YOU, not a close friend or family member, not someone you work with, not your neighborhood barista – you cannot understand what it’s like. Period.

When you first get started it can be very overwhelming. I went from knowing nothing beyond setting up an appointment with a reproductive endocrinologist (“RE” aka infertility specialist) to being consumed with researching what the road ahead may look like for us and trying to find various support and informational outlets. Thankfully, I found an incredible infertility community – on Instagram of all places! – very early on. It was and still is such a great place to ask questions, share my own journey and follow others, express emotions and so much more. I have since found a few others along the way, too. (If you are struggling with infertility, I highly recommend getting involved in a community so that, at the very least, you don’t feel alone.)

I was recently reflecting on my experience, as I often do, and thought it would be nice to put together a small collection of thoughts from other women in the community. I encouraged any and all answers, from the broad to the specific, the good and the bad. I have shared the answers below (some comments have been edited for clarity). The question:

“What do you wish you knew at the beginning of your infertility journey?”

“I wish I knew that eventually my dreams would come true so that each negative test didn’t hurt so much, but we can’t predict that.”

“I wish I’d gone to an RE sooner. We spent a year trying Clomid with my OBGYN. I would do anything to go back in time and move straight to an RE for a proper diagnosis and treatments.”

“I went into it thinking I would only have my doctors and nurses to talk to, but I’ve found amazing support groups that have helped me, too. The journey is hard, but it’s so much easier knowing you aren’t alone.”

“Not everyone will understand, accept or support what you are going through and that this is okay. I thought there would be an outpouring of support from all angles. The reality is that not everyone is gonna get it or understand infertility.”

“You have to be your own advocate. If something doesn’t feel right, ask questions. Keep asking until you are comfortable.”

“I didn’t realize how many people in my life have been or are on their own infertility journey until I made our IVF pregnancy public.”

“How much time it takes! I wasn’t prepared for all the appointments, lab tests, ultrasounds, etc.”

“Some people said I was young and worrying too much. They said we had plenty of time, and I needed to relax and it would happen. I actually started believing them. We suffered heartbreak after heartbreak, yet I kept putting off IVF. Never think that it’s too early to seek help. Trust your gut.”

“Find groups/communities for support early on.”

“I wish I knew that I would be strong enough to get through it and beat this awful disease.”

“The emotional exhaustion impacts you physically. I had never felt so tired and worn out from the mental roller coaster I was on. Also, it changes you as a person. It changes how you look at people who haven’t struggled, how you look at pregnant women, children, families, etc. Even though I’m blessed to be pregnant now, I still struggle when thinking about our journey compared to others.”

“Taking multiple pills/suppositories/shots a day isn’t fun, but it’s not forever.”

“I wish I knew that it was better to not share our struggles with so many people. Every time an IUI or IVF cycle failed or was canceled, I had to disappoint so many people. I also wish I knew there was more extensive testing that could be done on me. I kept asking for autoimmune tests, and I was getting them, but they were very basic. When I switched to a doctor that did more extensive testing through blood work and did a biopsy test, I finally got some answers. I feel like we wasted so much time, money and embryos leading up to that point.”

“I didn’t know how much really goes into treatment. It’s so much more than just a few pricks from needles and doctor appointments.”

“It’s not necessarily an immediate fix. It took a lot for me to come to terms with having to do IVF (the expense, the shots, the loss of getting pregnant on my own). I thought that would be the hardest part (thinking I’d have to ‘buy my baby’) when the reality was it was just the start. There’s no guarantee treatments will work. I was not prepared for the long battle of multiple failed cycles.”

“Google is the enemy. Every journey is so different, and so much that I had read online made me more nervous about our journey than I needed to be. I only had five eggs retrieved; I wanted to cancel. My RE assured me that everything looked perfect, but I was so nervous because I heard so many stories of 18-20 eggs being retrieved. Now, I know that my journey is so different than anyone else’s.”

“I didn’t realize how frustrated my partner would be because he feels so helpless at times.”

“It spills over into every aspect of your life. Relationships change, your time is spent differently, money is looked at differently. Diets are changed, the way you approach problems and handle stress is different. Literally everything changes. At least for me it did.”

“IVF isn’t as scary as it seems. Don’t let fear hold you back from moving forward with a treatment plan.”

“The end goal isn’t to be pregnant. It is to become a mother.”

“Learn as much as you can, like what your insurance will or will not cover, how your body works (or should work), what different meds are used for. Infertility even has its own language! Get your partner involved in the research, too.”

“I think I should have looked into more help emotionally. Many women endure infertility hardships and suffer in silence. I was very vocal about my struggle, but I neglected my own emotional health in the process. Make time for you. Meditate, journal, seek therapy. I ended up depressed during the process. I spent a lot of my time home in bed isolated. I wouldn’t socialize anymore. The physical, emotional and financial strain of it all can be overwhelming even for the strongest of women. Find a support group with women who are going through exactly what you are. Skip telling others who haven’t been through it. I’m all for being an advocate for infertility, but, in my opinion, sharing my struggle with my family and close friends was pointless because they couldn’t grasp my grief. At times, their comments were painful and insulting. It was the last thing I needed.”

“I wish I knew just how emotionally taxing it would be.”

“My journey is so different than everyone else’s. Be careful when comparing your results to someone else’s.”

“Holding your baby in your arms is worth every pain, tear in your eye, heartache, injection, dollar spent, early morning monitoring appointment and whatever else you endured on this seemingly uphill battle.”

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2 thoughts on ““what I wish I knew at the beginning of my infertility journey”

  1. The EcoFeminist says:

    Your perspective is definitely from someone who has made it over the fence to the other side. For those of us who’ve gone through multiple failed cycles and had to end the journey, our “what I wish I knew” bullet points are very different… Because the fact is it only works for one in three women, because “don’t give up” is unacceptable language to use as it tells women that success is simply a matter of going through tens of thousands if not more dollars of repeat cycles and physical trauma. Having gone through six failed cycles of donor egg IVF and losing a baby, and watching my body & heart fall apart from the PTSD involved in so much loss after going through 9 embryos, along with watching our two-year wait for international adoption also fall through just at the end of cycle 6 of DEIVF, if I had to share anything with women who are still in it, it’s that they need to do what is best for their own lives and their own health, and beware of the addictive nature of fertility treatments and doctors that try to get just one more treatment out of you (not to mention the number of people also cycling out there or the ones who have been successful telling you that you can’t give up because they didn’t give up and that’s why they got pregnant which is NOT why they got and stay pregnant).

    I mentioned this all in full happiness for your success story while also sharing what many don’t – that the majority of people who go through IVF actually don’t come home with a baby at the end of it, and to be prepared for that reality because fertility clinics and websites certainly won’t.

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    • Jennifer says:

      Of course the perspective offered on my blog is my own, which is that of struggling with infertility and “making it to the other side.” How could I presume to know what it’s like to be in anyone else’s shoes? I offer my perspective as one tiny sliver of insight into what infertility may look like, and I encourage others to share their experiences, as each experience can be vastly different. It’s true; not all infertility journeys have the ending one may start out hoping for. I’m not ignorant to this fact. Though I certainly don’t have to, in an effort to express that I realize many others do not have the experience we did, I often feel the need to “defend” my own experience by saying something along the lines of, “…we are so very fortunate to have had success….” I don’t like that I even feel that I have to do that, but I do it anyways. As you said, every woman needs to take time to evaluate where she is at in the process, how far she’s willing to go, options available to her, etc. She should reevaluate periodically, as feelings and situations change. Just because one woman was willing and able to go through eight rounds of IVF doesn’t mean that is the answer for the next woman, and that’s okay. I would imagine there is a struggle to decide when enough is enough because no one wants to have regrets thinking “what if.” Similarly, being at peace with a decision to not move forward is important, and that comes at different times in different forms. I speak with women who have had success and others who have not. I know some women that went through 6+ rounds of IVF. Others who have used donor eggs/sperm/embryos. Some decided to pursue adoption. Others had success with minimal intervention. All have very different stories, but their experiences and emotions are just as valid as the next woman’s. I’ve had lengthy conversations about this. I think of infertility as a ladder of sorts, and each rung represents different levels of treatment. Some women have had success after a round or two Clomid. Those woman stand on the first rung of the ladder. Some women have to move on to IUIs. They stand on the second rung of the ladder. Some move to IVF, and they are on the third rung. Some proceed to go through multiple rounds of IVF or FETs, they are on the next rung. (The “levels” for each rung aren’t concrete, of course, just a general idea.) The women on higher rungs can look down and say, “Yes, I remember being at that point and feeling XYZ,” but the women on lower rungs cannot look up and presume to know what the women on higher rungs are going through or have gone through. Again, it doesn’t make anyone’s feelings less valid, it’s just that the experiences aren’t the same.

      This question was presented to about 2,000 women, all with very different situations and experiences. I received about 100 responses, many of which expressed similar sentiments. The responses that I posted ended up being split about 60/40 between women who have had success and women who have not, respectively. I didn’t craft up these responses, and this definitely isn’t just a sampling from women who all have babies now. I also don’t think that any ill-intent is meant when someone says, “Don’t give up!” I think they are simply trying to remain hopeful and positive under circumstances that can often seem anything but. Though, to some, I can understand how that comment can seem as helpful as “just relax.”

      I really could go on and on about this, but I’m trying to keep it short. In any event, I really appreciate your perspective. As I alluded to before, I cannot begin to imagine what you have gone through, physically and emotionally. I wish you all the best in the future.

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