Three Miscarriages, OHSS, and Being Her Best Advocate: Rebecca’s Infertility Journey
“I see a lot of women sharing their stories who are still on the journey and still waiting for the chance to be a mother. I’ve had the failures, have been through the transfers and the miscarriages, and I’ve also had success. I’ve come full circle with IVF, and I really want to share my story to encourage women and hopefully share hope through my own journey.”
Rebecca didn’t know a lot about infertility prior to starting her family. She had her first miscarriage in 2015, the same year she got married, and really had no idea what a miscarriage was or what it was like to experience. She had to learn what it was as she was going through it. She ended up having three miscarriages total all before turning 35, with two additional ones in 2016 and 2017. It was after the third miscarriage that her OBGYN started to say that something wasn’t right, but that it was also bigger than her. That’s when she gave Rebecca a referral to see a reproductive endocrinologist (RE) within her practice.
JUMPING RIGHT INTO IVF
“The only testing we did after my miscarriages was after I had a dilation and curettage (D&C) after one miscarriage, and they found potential issues with my tissues. The new RE didn’t perform any additional testing to look for other reasons for the recurrent pregnancy loss and his advice was to jump right into IVF so that is exactly what we did.
The physical part of IVF took a toll, especially because it was all new to me. I had a fear of needles prior to starting the process and having to push through all the needles and injections was a lot for me. There were so many medications, everything was incredibly specific, and it was all to be administered at an exact time. I had to constantly remember that at a particular time of the day, I would need to do a shot and there was stress knowing that I could not be off by even a minute or two. That certainly did not help with my anxiety.
I only did one egg retrieval throughout the whole process because for our first round of IVF they retrieved 69 eggs! Thirty of those eggs fertilized and 23 matured and made it to freeze. My first IVF cycle had to be a frozen cycle because I experienced ovarian hyperstimulation (OHSS) after my retrieval and we needed to give my body time to recover.
Unfortunately, my first transfer failed and my RE advised us to have our embryos genetically tested. We were hesitant because the test was not covered by our insurance, and we would have to pay out of pocket, but we also wanted to have success. So, we went forward with the genetic testing, had our second transfer, and it still didn’t work. Two transfers and no successful pregnancy.”
FINDING A NEW REPRODUCTIVE EMBRYOLOGIST
“After our second failed transfer, I decided we had to switch doctors because I felt like we weren’t getting the help we needed. I saw an advertisement for our new RE’s clinic on Facebook after asking other moms for their advice. It was from their suggestions that I found my new RE’s clinic and while there was more than one physician at the clinic, many of the ladies shared their success with one doctor in particular. That is who I decided to see.
When we started with the new RE, I told her our whole story and she immediately decided to start with a new test called the endometrial receptivity analysis (ERA). She thought it might be a transfer timing issue because we knew my embryos were genetically normal from the genetic testing we had completed. I had never heard of the test before and had no idea what it was, but we decided to go ahead and have the test completed. We paid for this test out of pocket, as well but it wasn’t as expensive as doing the genetic testing.
We did the ERA testing in July 2020, took a month off in August, and used the results to determine the best time to transfer my embryo for our third transfer in September 2020. And just like that, we got pregnant!”
What is Endometrial Receptivity Analysis (ERA)? ERA is a diagnostic test that is used to identify what is thought to be the individualized, optimal time or window for an embryo to be implanted and result in a live birth. The test specifically analyzes the endometrium, or the lining of the uterus, by looking at what genes are expressed throughout each phase of the menstrual cycle, and this helps determine if the endometrium is receptive or non-receptive to an embryo. With the information gathered from an ERA, a physician can determine an individual’s ideal receptive phase within a six-hour window.
The test was first developed for individuals that experienced recurrent transfer and implantation failures and slowly became available to all IVF patients. A recent large, randomized study was completed in 2021, and the results published in the Journal of the American Medical Association (JAMA) showed that within ‘good prognosis IVF patients’ there was no significant improvement in transfer outcomes between those subjects who underwent ERA testing and those who did not. From a cost-benefit perspective, the researchers did not find a benefit from having an ERA test performed if you had not experienced recurrent implantation failure (RIF). It’s important to note that the study did not evaluate ERA in patients with RIF and therefore the results cannot be generalized to this group of individuals.
“To this day, I call my RE my angel because she’s the reason why we have a child. From the beginning, she said that there was never a guarantee with IVF. She was honest and said she couldn’t promise me anything, including a baby. But what she could promise us was that she would do everything in her power to help us and that is exactly what she did. I am forever grateful to her because she promised she would help, and she lived up to that promise.”
FEELING LIKE A NUMBER AT YOUR INFERTILITY CLINIC
“I felt like a number at my original RE’s clinic. When a transfer failed, the old RE didn’t want to change anything about my protocol. They wanted me to do the same thing again, while I wanted to revisit what we had just done and determine if there was something else we should and could do. I was looking for someone who wanted to try something new when faced with old processes failing. But when that isn’t offered to you, you start to feel like another number in a big business.
If I had known what I know now, I would have switched doctors after the first failed transfer and I would probably be working to bring our second baby into the world by now. But it never dawned on me that one doctor could know more or be open to other options in comparison to another RE. When you get to be on the other side of 35 years and the clock is ticking, you want a doctor who isn’t going to stick to what is ‘standard’ but instead, is willing to try an approach that is specific to you.”
THE FEAR OF PREGNANCY AFTER LOSS
“IVF took an emotional toll on me, and that burden remained with me throughout my pregnancy. Having gone through a miscarriage I didn’t tell anyone that we were pregnant right away because I was so scared. At each doctor’s appointment, I’d ask multiple times if there was still a heartbeat and they probably thought I was crazy for asking so many times, but you must know my story to understand why I was asking constantly. I wanted to know and hear that his heart was still beating because I had already gone through three miscarriages with no heartbeat each time.
Things didn’t get easier after the first trimester and at 20 weeks I found out that my cervix was weak, making me high risk for preterm labor. It added to my fear, and I just prayed knowing that the Lord had brought me halfway through this pregnancy and would help carry me the rest of the way.
I had to get back on progesterone and the doctor put in a cervical pessary to prevent preterm birth. It was like they tied off the end of my cervix, like the end of a balloon, to keep my son from being born premature. I just remember thinking if we could make it to 34 weeks, we’ll be good because we can deliver, and he won’t have that much time in the neonatal intensive care unit (NICU). But 34 weeks passed, and then 36 and by God’s grace, the medication and the cervical pessary worked, and I carried my son all the way to 39 weeks and four days. He was full term!”
THE FINANCIAL BURDEN OF IVF
“The financial burden of IVF was extremely hard for us. The genetic testing, especially, was so expensive and the reason we didn’t get it done right away during the first transfer. We simply did not have the money for it. But after our first attempt failed, I decided we needed to figure out our money situation and get the testing done. It was a struggle to find the $5,000 USD and I was going to be testing eight of my embryos. I was able to use a Flexible Spending Plan through my job to help cover a big portion of the cost, but it was still a huge burden on us.”
FINDING SUPPORT SYSTEMS DURING IVF
“My husband was discouraged to keep going after the first two transfers failed, because he saw the pain it had caused me. I said to him that I wasn’t ready to give up. I wanted to be a mom and while hard, this is what I wanted. When I was ready to stop trying, I would stop but I knew I hadn’t reached that point yet. He understood and was a big supporter of me throughout my entire journey.
My family was also so supportive, and whatever decisions I made, they stood by me and supported me in those decisions. They were helpful and gave me the space and time to process when I needed it. When I did get pregnant with my son, I had two baby showers between my family and my church, and it was so special to feel all the support after a long journey to reach that point.
I also joined some support groups on Facebook when I started IVF thinking I could get in contact with other moms who had been down the road of infertility before me. I thought they might be able to share some information and knowledge with me and that is exactly what I found. I also got a lot of information from constantly talking to my doctor and never being afraid to ask questions.”
FOR THOSE WALKING THE PATH OF INFERTILITY
“Be your own advocate. If you are at a clinic or seeing a doctor that doesn’t feel like they are doing the best or the most for you, don’t hesitate to find help somewhere else. A fresh set of eyes and a new perspective could literally be the answer to helping you reach your goal of becoming a mom. It was for me.
Stay the course. I know that sounds cliché but don’t let anyone decide for you when it’s time to stop. If I had given up after my second transfer and not continued to pursue IVF because I was discouraged, I wouldn’t have my son today. But you will know for yourself what you need and want and should then follow that.
If you want to keep trying, don’t be afraid to try new things.
Reach out to other women like yourself because you never know what the next woman may know that could benefit you and your situation. I’ve met so many women and have been able to share things with them that they don’t even know about or have heard about. It’s exactly what happened to me and helped me in my journey.
Find your support system, whether it is your spouse, a family member, loved one, or a friend. Find that person or those people because you need them on your journey. You need someone that will support you and uplift you.
Follow your heart and keep going if that feels right to you because sometimes the moment you give up or want to give up is when the miracle happens.”