Diagnosed with Premature Ovarian Reserve at the Age of 16: Courtney’s Infertility Journey
Courtney knew early she would have fertility issues. At 16 years old, she still had not started her menstrual cycle and her mother brought it up to the doctor who sent Courtney to a specialist at the local children’s hospital. They did a procedure and found that her ovaries were there but very small. After a lot of blood work, Courtney was diagnosed with premature ovarian failure at the age of 16. Before she even started to think about having kids, she learned why she had never had a period but also learned her ovaries weren’t functioning and she had few eggs. Even more challenging was receiving the news that it would be difficult, if not impossible, to have kids. At 16 years old, how do you process and deal with that information? It’s exactly what Courtney was forced to do on her pathway to becoming a mom.
“I could not believe we’d have to pay just get a child here. And even then, we’d be paying for a chance not a guaranteed child.”
WHAT DOES PREMATURE OVARIAN FAILURE AT AGE 16 MEAN?
“Knowing that I had premature ovarian failure at age 16, the doctors put me on birth control so I would start having a monthly cycle and to introduce estrogen to my body since I could not produce it on my own. The condition really didn’t start to affect me until my adult life and specifically after I got married. I had shared with my husband when we started dating because I didn’t want to wait until we got serious to then drop the news that I potentially couldn’t get pregnant because I had so few eggs.
Although I knew early on what was wrong, I didn’t know anything about it. The little research I was able to find on Google in 2014 said that most people diagnosed with this condition have a 1%-2% chance of naturally getting pregnant. It was immediately discouraging.
I honestly would have gone through my whole life without even attempting to get pregnant. A major discouraging factor for me was the cost of treatment that I could not believe we’d have to pay just get a child here. And even then, we’d be paying for a chance not a guaranteed child. I didn’t want to go through this whole process, paying a huge amount, and then potentially end up in heartbreak. But my husband and I had a conversation, and the outcome of that conversation was that we agreed to try. I wanted a year to research clinics and then we’d go talk to someone.”
FINDING A REPRODUCTIVE EMBRYOLOGIST THAT WORKED FOR US
“I knew I wanted to find someone who was African American, who could relate to me, and I also wanted a woman. The first RE I saw was the only one at that moment who met my criteria and during our consultation, we learned she also used IVF to have her daughter. That immediately made me feel much better and more understood.
Our RE ended up switching clinics and we followed her to the new clinic. However, she left the second clinic and at that point, we made the decision to not go with her and switch clinics a third time. This second clinic had more female physicians and we were able to switch to another female RE who was also African American and had great reviews. She was very friendly and personable, didn’t speak to us in medical language all the time, and we related with her. Ultimately, it’s about finding someone you can build a relationship with, and we found that with our new RE.”
“I wish I had a better understanding that IVF is not a guarantee but is a chance.”
STARTING THE IVF PROCESS
“Once we settled in with our new RE, we got started right away with a lot of preliminary tests to make sure my tubes, uterus, and uterine lining looked okay. While we started with the tests, my husband and I started applying for grants. We were able to apply for a grant that our new clinic offered, in addition to other grants. We ultimately received a grant from Baby Quest, which helped us tremendously and allowed us to keep moving forward with the process.
We started with our counseling session that was required because we would have to use a donor egg, given my low ovarian reserve. We also went through a mock transfer, where they put me on the medications as if I was going through a transfer to then check my uterine lining. This step slowed us down a bit because on the first mock cycle, my lining wouldn’t reach the desired thickness. They were hoping I could measure around an eight, but I only got to a four. They kept increasing my estrogen, and still nothing happened. We started over and I took the estrogen shot and the estrogen pill and again my lining was between a four and half and a five.
I couldn’t stay on estrogen for too long, so we again ended that mock cycle and they performed a procedure where they went in and took a sample of my uterine lining to make sure there was no inflammation. Everything came back great but we ran into a different challenge: COVID. We were forced to pause treatment.
When we were able to start treatment again, we did another mock cycle with the estrogen shots, estrogen pills, and the addition of Viagra. The Viagra was supposed to bring more blood flow to my uterus and help thicken my lining. I ultimately measured at a six and my RE met with her clinic board to see if she could get agreement to move forward with a transfer because the lining had the trilateral pattern they look for, despite not being the desired thickness.”
FINDING AN EGG DONOR
“We got the go ahead to move forward with a transfer and had moved through a checklist that allowed us access to the egg donor database from which we could pick our donor. I had read in online forums that people of color don’t always have lots of donor options but surprisingly, when we got on the database, we felt like we had so many options. We ended up having to eliminate our options because there were so many, and we ultimately did find a donor.
The program we participated in was called Two-to-One and the donor we selected provided her eggs to me and another person. She did the retrieval in early Summer 2020, and we received 13 eggs. From those 13 eggs, nine were mature, seven fertilized, and we ended up with four embryos. Because our donor was in another part of the U.S., the embryos were shipped to us and arrived in August 2020, and we were able to transfer the first embryo in October 2020.”
“Once I did get pregnant, I was always worried and never felt truly comfortable. I never felt at ease because I had gone through so much to reach this point.”
THE EMBRYO TRANSFER THAT WORKED
“Unfortunately, our first embryo transfer was not successful, and it was heartbreaking. The holidays were coming up and I love the holidays so much I decided to take a break and focus on enjoying the season. In January 2021, we started treatment again, and our doctor wanted to start with an endometrial receptivity analysis (ERA) test. It was another mock transfer and for the first time, my lining measured over eight. The only thing I had changed since the last transfer was that I started taking a vitamin E supplement but I’m not sure what truly made the difference this round.
From the ERA, the doctor determined I needed 120 more hours of progesterone before a transfer and so for the next protocol that is exactly what we did. I also continued the Viagra, which I had to do vaginally, took the estrogen pills orally and vaginally and included estrogen shots. It was difficult to sleep because I had to do the estrogen pills about every six hours, and I had all types of alarms going off telling me it was time to take something else.
For my last lining check before my second transfer in May 2021, I measured around a seven and a half and the doctor assured me I would likely get to an eight by the time I came back for the actual transfer. I came back a few days later for the transfer and my doctor had to scrape away some of the blue that had collected from all the estrogen pills because she couldn’t really see what she was doing. Luckily, our second transfer was a success and in January 2022 we had our son!”
UNAWARE OF THE EMOTIONAL BURDEN OF INFERTILITY
“The emotional burden of infertility and treatment was the one thing I really wasn’t aware of until I was going through it myself. I had no clue, and I went into the process very naïve. I knew when we started that IVF was not a guarantee, but I just thought, if we followed exactly what the doctors told us to do, obviously it had to work because they know the limitations of my body.
When things weren’t progressing as it showed they should on paper, I immediately started to ask myself what I was doing. Why was I putting myself through this process because it was incredibly hard, and I had so many tears. Our clinic was not close to our home so, the drive there was always daunting to me and some days I just didn’t want to be bothered. There were days that I just didn’t want talk about any of it and then when I did want to talk about it, I felt like I dumped it all on my husband because there was no one around me who had ever gone through infertility. Others wouldn’t know what to say and most of the time I really didn’t want to hear everyone else’s suggestions, thoughts, or opinions because you don’t know what it feels like unless you are going through it.
I allowed myself to feel everything and if I needed to cry, I cried. I didn’t think keeping my feelings in was healthy for my body and it was already going through so much, I didn’t need to add to the stress I was carrying. I tried to release into the things that did bring me joy as much as possible and tried to stay as positive as I could. But, sometimes after some appointments it was hard to do that. You keep dishing out so much money, and at times your body just doesn’t respond to the medications the way you hoped, and you’re left wondering why you signed yourself up for this. There were times when I simply did not see light at the end of all this effort.
Through it all, I had to put a lot of trust in God and continue to ask that God increase my faith, lead me, guide me, and help me through this. We stayed the course, and now I can say that it really was worth it but when I was in the thick of it, it was incredibly hard. The process taught me patience and I learned that just because you have the dates for when things will happen, anything could impact the timeline, and it could take longer than expected.”
FINDING SUPPORT THROUGH MY HUSBAND
“From the beginning, I found the most support through my husband and it has been the two of us going through this together. He would come to all the appointments, he was the one who gave me all my shots, and he would know and see firsthand what was going on. He even joked at the ultrasound appointments looking at my lining that he could read the screen well enough to tell us where the lining was at.
“I tried to release into the things that did bring me joy as much as possible and tried to stay as positive as I could.”
My family had good intentions, but they didn’t know what to say and didn’t understand what we were going through. At one point, I sent a message to everyone and told them where we were on our journey and asked that they refrain from sending me suggestions or opinions on what they thought we should do. I didn’t want to feel animosity toward them for trying to be supportive the best way they knew how but also had to protect what was best for us. It was hard.”
THE FINANCIAL BURDEN OF INFERTILITY IS HEAVY
“Before there was even a thought of getting a grant, I honestly don’t even know if we had a way to pay for our treatment. We had started saving but when we found out what the total cost was going to be, it was sticker price shock. We were quoted around $20,000 USD and while we had some saved, we weren’t close to the total needed.
While researching, I saw mentions of infertility grants but most of the time, the grant required you to go to a specific clinic for an opportunity to win the grant. I ended up finding three to four grants that we could apply for and again, it’s more money because you must pay an application fee to apply and after a couple, that starts to add up. We focused on how those fees didn’t compare to what we could potentially get in return if we were chosen.
Applying was a process but in September 2020, we received our grant from Baby Quest and their portion helped us so much. They paid their portion, and we paid the leftover since our insurance didn’t provide any infertility treatment coverage. We were still paying for all the medications and all the monitoring appointments when I was going through my mock transfer, which were about $120 USD each time. If you include the other things like gas to make the 45-minute drive one way to the clinic and parking at the clinic, our total cost was around $40,000 USD. That’s why the grant from Baby Quest helped so much.”
IVF IS NOT A GUARANTEE. IT IS A CHANCE.
“I wish I had a better understanding that IVF is not a guarantee but is a chance. When we started our IVF journey, I immediately thought it was the answer and that we would start, follow the protocol, and get a baby right away. I’m also a planner and love to write things down to plan for them. We had specific dates when we would reach specific steps of our process and when things did not happen according to the original timeline given to us, it was hard for me to cope. Even the timeline and your protocol are not guaranteed in this process.”
PREGNANCY AFTER INFERTILITY
“Once I did get pregnant, I was always worried and never felt truly comfortable. I never felt at ease because I had gone through so much to reach this point but now felt there were other fears around being pregnant that took over. I thought getting pregnant would help me feel I was in the clear and instead it was a constant worry if I’d make it full term and all would be ok. It took until around week 30 of my pregnancy until I finally allowed myself to believe we were actually going to have a baby. Until then, it was a whirlwind.”
“Through it all, I had to put a lot of trust in God and continue to ask that God increase my faith, lead me, guide me, and help me through this.”
FOR THOSE WALKING THE PATH OF INFERTILITY
“Listen to your intuition and follow your intuition. If you feel you need to take a break from treatment, it’s okay to take that break. I know it’s easy to focus on how time is not on your side and taking a break seems impossible. But, in the long run, your physical body will be healthier, and your mental health will also benefit. If you need to take a moment, make sure you do.
Release any of the feelings that you have and don’t hold on too tightly to them because that affects your body, as well. If you’re spiritual, don’t hesitate to talk to God because I know I turned to him when I was upset. I leaned on my faith, and it helped me let it be. I trusted that God knew my heart and that he wouldn’t put more on me than I could bear. I knew that for whatever reason, he thought I was strong enough to go through this, even when I didn’t think I could.
If you have someone you can connect with, that has gone on a similar journey, that is also helpful. They have a better understanding of the fine line between what is appropriate to say and what is not. Most important, they understand your journey and what you are going through.
Lastly, as hard as it might be, try to find some type of positivity. As you go along, there might be setbacks and occasions when things don’t go according to plan but try to find something positive within the circumstances. That is what helped me continue. When my mock embryo transfer didn’t go according to the plan, I thought maybe God didn’t want me to get pregnant right at that moment and maybe he needed me to wait a little longer. I would pray over the staff, doctors, and equipment and if something was delayed maybe it was because there would have been a malfunction that day. Finding positivity is what helped keep me going and I also learned I needed to show some patience.
When going through this journey, which can be incredibly hard sometimes, it’s easy to lose yourself. You’re not fun anymore and there are days when you just don’t want to be bothered. Some women can’t go to baby showers or celebrate other women getting pregnant not because they aren’t happy for someone else but because it’s just so hard. For me, it was in those moments I knew I needed to take a pause and regroup because I didn’t want to lose myself to infertility.”
You can continue to follow Courtney’s parenthood journey and see how she continues to uplift and support others battling infertility on Instagram @memyinfertilityandi.