Interview with Alicia: 8 years and counting

(Disclaimer: This story was shared in 2022. Alicia has provided an update to her journey at the end!)

I am a 35 years old, live in the Detroit area. CPA working in the corporate world for a tech start up. I am fortunate to work from home every day with my 13 year old dog, Robbie. My husband and I have been together for 12 years, married for 8.5 years. We do not have any children, but treat Robbie like she is our child. Our other dog unfortunately passed away earlier this year, so I think we spoil Robbie even more so now than she was before. In my free time I love to play pickleball, that was a quarantine hobby that has now taken over. I am also a volunteer tour guide on the weekends at a historic military fort in Downtown Detroit, and I love doing that. I love anything to do with history, so that is a lot of fun for me.

Tell us about when you started trying, how did you know something was wrong?

Our TTC journey started almost exactly 9 years ago now (8 at the time of writing). Shortly after getting married I came off birth control and we were in that trying but not trying phase for probably 6 months. Nothing was happening, so we decided to really start tracking ovulation and start seriously trying. We did that for about 8 months when I started to worry there may be something wrong, and jumped into testing first for myself and then my husband.

What have you learned about what has caused your infertility?

When we first started fertility testing, no issues came back on my end. My husband then did a semen analysis and it came back that he had low motility and almost no sperm. We were shocked to say the least. I had issues with fibroids in the past, so I kind of assumed that the testing for our fertility issues would come back that our issues were something to do with that. Our first RE told us we really had no option but to do IVF. We then decided to get a second opinion, but he said the same thing. We ended up going with our second opinion doctor for treatment, although, after a nervous breakdown (on my end, not my husband) we didn't actually start IVF for another 2 years after that. Our doctor told us we would be an easy case as we could do IVF with ICSI and the male factor wouldn't be an issue. Going into that first round of IVF, we were so sure it would be successful. But 6 rounds of IVF later, 3 doctors, 4 second opinions, 2 genetic counselors, and 1 Reproductive Immunologist, he was definitely proven wrong. We've now learned along the way that I have PCOS as well as a Balanced Translocation and immune issues.

You have been doing this for 8+ years, what helps you continue to persevere?

At this point I'm not really sure most days how I keep going. It's so, so hard - indescribably hard. I think the only thing at this point keeping me going is that we have been through so much that I can't imagine walking away from this journey without a baby. I'm so scared of everything I have put myself through - emotionally, physically, and financially - that to not end this journey with a baby is just terrifying. 

I also think having a plan for what comes next has been helpful for me. I am always thinking 2 steps ahead in this journey, and what I want to do for each different outcome of the step I'm on. It helps me to know where I am going, regardless of how each round turns out.

You also have had to see multiple doctors. What led you to try different doctors? What advice would you give to someone looking for a new doctor?

I mentioned that I have done 6 rounds of IVF now (egg retrievals, 5 transfers). The first 3 rounds were with our first doctor. Our first 2 rounds of IVF with him we ended up getting 1 embryo each round, the 3rd round we had no blastocysts at day 5. I had my follow up appointment with him after that round and he said we could keep doing the same thing and probably get the same results or move on to donor embryos. I pushed back and asked if there was more testing we could do or protocol changes to make, and he said no. At that point I knew I had to at least get a second opinion. It seemed crazy to me to not be willing to try anything new before jumping to a donor.

I decided to meet with 3 additional doctors for second opinions at that point. We then decided to change clinics to one of those doctors who seemed interested in doing a lot more testing before doing another round of IVF, which I appreciated. He also ended up changing my protocol quite a bit once we got to a round of IVF with him. I'm so grateful I left that first clinic because the new clinic diagnosed me with PCOS, not sure how the first clinic missed that! He also found my Balanced Translocation and from there I met with 2 genetic counselors about our specific case.

Although I liked that doctor, after our next failed round of IVF with him (2 embryos, neither implanted) I decided to move to one of the other clinics that we met with after our 3rd round of IVF, as our second doctor's office had such long wait times for every appointment. I felt like I was wasting a lot of time just waiting. I am so glad, again, that I decided to move clinics. I really wish that I had started with my current clinic. They have been nothing short of amazing, and exactly what (to me) an IVF clinic should be (shout out to RMA of Michigan). They are so much more personalized and communicative. Our doctor also has, I feel, been the most exploratory with us and willing to try pretty much anything that I bring up, and he always has new ideas for us as well. 

As far as advice for something looking for a new doctor. First, nothing has to be wrong to seek out a second opinion. I think a lot of people like their doctor or don't want to offend them, but I highly suggest even if you don't want to change clinics, at least get a fresh perspective from another doctor and take that to your current doctor. Look for an office that is good with communication,and will take the time to answer all of your questions without making you feel like a burden. That's their job! For me, I've realized now how important promptness is too. At our first 2 clinics after a failed round, we'd have to schedule a follow up appointment and wait 2-3 months out just to talk to the doctor. Our current clinic, our doctor has personally called us after each round with results and I can talk to him immediately, and he'll answer all my questions. I've also realized how important compassion is.

After my miscarriage earlier this year, our current doctor personally called to check in on how I was doing emotionally more than once. I've never had a doctor like that before, and it goes a long way!

What have you done specifically to address some of your fertility issues?

I feel like we have done a lot to address issues. Seeking second opinions, doing a lot of research on my own of treatments and new technologies. I also take a lot of different supplements to help with my PCOS. Most recently though, I have started seeing a Reproductive Immunologist which is something I learned about through my own research. Through that, I am now managing both an RE and an RI, but I feel like I am taking control to address any potential issues.

What do you wish more people knew about what you have been going through?

There are so many things, it's hard to pick just one! Probably just the fact of how all encompassing infertility is and how it changes and affects every single aspect of your life - your career, your financial stability, your physical self, your mental health (oof! what's that at this point?), your marriage, your family relationships, friendships. Just it really creeps into every single facet of your life and just kind of takes over. Also, I think just because I'm able to smile one day doesn't mean that I'm not in a constant state of grief and pain. This isn't something that gets easier as time goes by like most grief that people are familiar with, it gets deeper and more difficult.

Who are the greatest supporters to you throughout this journey?

I haven't always been fortunate with great support systems during this journey, and unfortunately I have seen a lot of relationships change for the worse because people don't understand me at this point. However 2 people now jump out to me as the greatest supports.

First is my mom. The first probably 7 years of our journey I wouldn't say she wasn't a support system if I went to her, but she didn't actively reach out to try to support. We went to a therapy session together after my miscarriage earlier this year (another pro tip - find  a good therpist who specializes in infertility. I would not be the person I am today without mine!), to talk about how she could support me. She revealed that she thought by bringing up anything infertility related around me that it would hurt more than do good if I wasn't thinking about it at that moment. After the therapist helped bridge our communication gaps, now my mom knows that what I appreciate is when people check in on me. There is never a time that I am not thinking about infertility, so she's not going to ruin my day by bringing it up, and in fact, I really need people to ask me how things are going. To me, it shows people are invested with me and care about the outcomes as much as I do. Since that therapy session, my mom has been a great support and I really lean on her with a lot/

Second is my best friend. We have been best friends since 6th grade, but my infertility journey has tested our friendship more than anything in our past. It has been very hard on both of us, but I think our relationship today is stronger than it ever would have been without it. From day 1 of TTC she has been there as someone I know that I can lean on and tell anything to. Our relationship did get rocky as she became pregnant with her son right as I found out we lost our first son (failed embryo transfer of a boy. I know some don't consider it a loss, but I do). It was and is so hard to be there for that aspect of her life, and created a lot of tension between us. Just as hard as infertility has been for me, I know that it has been hard on her as well to not be able to share her son (and she is now pregnant again, so now her daughter) with me. I imagine that side of things is very difficult as well. We have been very open with each other, and although it's still very hard on both of us, I think we're in a place of understanding. I would not be where I am today with her either, she is truly the epitome of a friend, and not a day goes by that I don't realize how lucky I am to have her.

How else have your relationships changed?

This question, I really think I could write a novel on and honestly struggle with how to approach this question. Infertility has changed every single relationship I have in my life. Sadly, most relationships have not changed for the better. I think the best way to answer this question without going into specifics is to answer it very generally. I have become a much more guarded and skeptical person now, and really analyze what and how much I share with people so that I guard my heart. I have had the most hurtful comments from the people I thought were closest to me, especially over the last 3 years of back-to-back IVF treatments. It has made me realize that if they can say the things that have been said to me, that they haven't heard me or seen me through any point of this journey like I thought they had, and I think that hurts the most. It's hard now not to be bitter and resentful toward a lot of people in my life, which is heartbreaking.

UPDATE: I am lucky to have a positive update to add. Shortly after this interview, we did a fresh transfer of our only 2 embryos from our 6th retrieval. We lost one angel at 6.5 weeks, but our daughter was born in June. It was an anxiety ridden pregnancy, and not without complications. The immune medications and protocols were harder than I thought they would be, but I truly believe that is what sustained my pregnancy. Our daughter was born a month early but is healthy, and we could not be more grateful.