Unknown Infertility and the Daily Battle with Anxiety and Worry: Sarah’s Infertility Journey
When Sarah first started trying to get pregnant, she thought it would happen by month two and would be super easy. She started tracking her ovulation, she checked her temperature, and she even scheduled a photoshoot two months in advance from that two-month mark. They started trying in August and she thought they’d use the photoshoot in October as their pregnancy announcement pictures. Those plans didn’t work out and instead, she started a much longer journey with infertility than she could have imagined.
“I thought infertility was so rare, knew little about the statistics, and had no idea how common it is…I never thought it would be me.”
REALIZING INFERTILITY IS YOUR NEW REALITY
“When we realized infertility would be our reality, my knowledge of infertility was limited. I had a family friend who had struggled and gone through IVF, but I never thought that would be me. I thought infertility was so rare, knew little about the statistics, and had no idea how common it is. We started trying naturally in August and by the end of January I had my annual exam and told my doctor all the things I was doing and tracking but was still not getting pregnant. She suggested we wait a few more months and when we still weren’t having success through the summer, I went back in July of that same year. I felt like something had to be off because I knew from our tracking that I my cycles were regular, I ovulated regularly, and we were timing things appropriately.
At the time, I had only been seeing my primary care doctor because she could handle everything for me, and I was comfortable with her. But when I came back in July, after almost a full year of trying to get pregnant naturally, she decided to refer me to an OBGYN and order some bloodwork for me. We completed the bloodwork in mid-July, and it took about a week later for the OBGYN office to contact me. The initial phone call was terrible, and they said they couldn’t see me until the middle of August. It was not a good start and I decided to do my own research for a reproductive embryologist (RE). That’s when I found CNY Fertility.”
GETTING STARTED WITH OUR NEW FERTILITY CLINIC
“I had assumed I needed a referral to see an RE, but I called up CNY Fertility and thanks to a cancellation I was able to have my first phone consult in the beginning of August. They wanted to do some initial bloodwork and scheduled a hysterosalpingography (HSG) to see if my fallopian tubes were blocked.
I was nervous about the HSG. If you’ve ever Googled what happens during the procedure you find terror stories and when my best friend had hers, it was terrible. So, when I went in September for my HSG I was so scared and asked for anxiety medicine to help calm me down. It ended up being nice, or as nice as it could be, and there were no blockages and no reports of anything appearing abnormal. We also had genetic testing done. Because I had previously done 23andMe, and I knew I was a carrier for cystic fibrosis. Our clinic wouldn’t move forward until my husband also had genetic testing done and they found nothing to indicate why we haven’t been able to get pregnant.”
THE FRUSTRATION OF CANCELED CYCLES
“However, and whatever you feel at any point in this infertility process is valid.”
“I was doing my first round of stims (i.e., IVF stimulation) and around day six I went in for a routine ultrasound and it looked like I might have a cyst, which I had never had before. I went in two days later and it had grown even more and was now huge! We were eight days into my first cycle, and they decided that with the cyst continuing to grow, we needed to cancel the cycle and have it aspirated. It was the first time I cried in the office because I was so devastated that I had made it that far only to find out it was for nothing.
They said they could do the procedure right there or I could come back in and have a scheduled procedure in the operating room (OR). I didn’t know how they aspirated a cyst, but I knew we weren’t doing it right there. I came in the next day, and they drained a cup of fluid…it was disgusting! Leading up to finding the cyst, I had felt bloated and now we knew why. They ran tests and everything seemed fine so I just had to wait for my cycle to end and then we would start another retrieval.”
RETRIEVING EGGS IS HARDER THAN IT SEEMS
“When I started my second round of IVF, I was so scared that it would end up like the first cycle and I wouldn’t be able to retrieve any eggs. You see others retrieve 30 eggs like it’s the easiest process but it’s hard to get eggs and viable embryos. When I completed my first full cycle, we struggled to retrieve just seven eggs and then on our second retrieval we got just four eggs.
My husband and I made lifestyle changes that we thought would help with the retrieval. We both went on the Keto diet for two months and maybe it helped, maybe not. We tried to focus on quality over quantity but it’s still a struggle to see that you’re doing the same thing as others who can end up with 10 healthy embryos after one retrieval and we struggled to just get three viable embryos.”
UNKNOWN INFERTILITY
“I’m honestly still within the unknown infertility group, even at this point. I did five medicated rounds with Letrozole, and a trigger shot, and nothing came to fruition from that. We did three IUIs, which again, nothing happened after those, but it was the ‘normal path’ and what we agreed to do with our doctor. After the IUIs I had two egg retrievals with a fresh transfer after each retrieval, without success. It’s just after this last frozen transfer that our embryo finally stuck, and we got pregnant.
We did some additional testing after my second failed transfer and the only thing abnormal that they have identified this whole time is that I tested positive for Group B Strep. I didn’t know what that was at the time, and when I searched, I could only find things related to pregnancy and labor, but I learned that it’s a fairly common vaginal infection.
Before starting a new cycle, I took Augmentin, an antibiotic, for 10 days to try and clear up the Group B Strep and then prior to this last frozen transfer, which did result in a positive pregnancy, they administered a vaginal antibiotic for three days. I also decided to take probiotics three months prior to my last cycle after doing my own research and learning about the presence of good bacteria versus bad within your gut. My doctor also suggested we do an hCG wash and an intralipid infusion prior to this last cycle that ended up being successful.
We did a lot of extra things for this last round that we hadn’t done before. Did any of them make the difference that allowed us to get pregnant? I actually don’t know because it’s hard to know what really changed and what really worked for this cycle.”
What is an hCG wash? Human chorionic gonadotropin (hCG) is a secreted hormone that is essential for improving pregnancy outcomes, as it responsible for the continuous production of progesterone from the corpus luteum to maintain a pregnancy. It has also been found to play an important role in helping the maternal immune system accept the fetus and not see it as something to attack. Because of its important role in maintaining a pregnancy, several studies have evaluated and found hCG administration to be beneficial before embryo transfer in frozen embryo transfer cycles. Specifically, studies have shown that a small amount of hCG infused into the uterus shortly before embryo transfer may increase the implantation rate.
BENEFITS OF LIVING IN A STATE WITH IVF COVERAGE
“Living in New York, we are very lucky to have the coverage that we do. New York requires insurance companies to cover three rounds of IVF unless you have group funded health care. It’s made for a great situation where the insurance through my employer has provided IVF coverage. Last year my deductible was $6,000 USD but my employer gave me $2,500 USD and a Health Reimbursement Arrangement (HRA) towards my IVF treatment.
My husband’s insurance would cover everything that wasn’t the actual procedure. That included bloodwork and ultrasounds, and while it didn’t cover the actual IUI procedure or anything related to the IVF procedure itself, his insurance did cover the cyst aspiration that was necessary before I could move forward with a transfer. Because of how things have lined up, we have paid $500-$600 USD out of pocket at this point, which is insane to have only spent this much. I’m grateful to have such good coverage and to live in a state that requires the coverage.
Obviously, there are other costs, to include gas since it was a commitment to go to CNY Fertility and we had to drive 70 miles one way. There’s also the time I miss from work. I filed for FMLA last August right before we started doing IVF because I knew I was going to miss more work and I didn’t want to waste all my sick days. My job has been amazing, and they’ve worked with me, but I’ve also tried to make most of my appointments at 7am, especially my ultrasound and bloodwork appointments. Being 70 miles away, that’s meant I have gotten up at 5am to drive down for the appointment and then drive back, only missing an hour of work.”
“How this has impacted my body physically has been a struggle but I’m also proud of what my body has done…it’s incredible!”
THE PHYSICAL BURDEN OF IVF – YOUR BODY IS STILL INCREDIBLE!
“Physically, the hardest part of this journey was having trouble losing weight and then gaining weight from injecting my body with so many hormones. How this has impacted my body physically has been a struggle but I’m also proud of what my body has done. When I look back and think of all the things that I’ve put it through to reach this point, I mean, it’s incredible. Am I comfortable with it all the time? No, but am I proud of what I’ve gone through? Absolutely!”
ANXIOUS AND WORRIED ALL THE TIME WITH INFERTILITY – IT’S NOT JUST YOU
“The emotional burden has been rough. Last February, I started taking anxiety medication because I just couldn’t struggle through life anymore. I was anxious all the time and worried about everything. And seeing pregnancy announcements is so triggering at any point in this process. It’s hard to see and hear about other people and the success they are having while you are over here struggling. It’s even hard to see others who were going through IVF have success because there is always a sense of jealousy. You can’t help but ask yourself ‘Why couldn’t that be me?’ or Why wasn’t that me?’
You see people that have just gotten pregnant easily without having to go through infertility and they’re just not worried the same way. There’s not the same concern that I struggle with daily around if they are going to make it to their second trimester. I worry about every test we run and whether we are going to get good results or if we are going to hear a heartbeat on any given day. I have an ultrasound tomorrow and I know my blood pressure is going to be high thanks to anxiety.
When you get pregnant after going through infertility, you are just waiting for something bad to happen because that is how you are conditioned. For the past three years, it’s been nothing but bad news and nothing going the way we wanted or expected. So, now that we are pregnant and things have been going so well for the past two months, we are still waiting for something bad to happen. No one understands that feeling unless you’ve experienced loss or been through the infertility journey. Just because I am 11 weeks pregnant, it doesn’t mean I am guaranteed to have our baby. It’s hard for others to fully grasp that and to accept that my husband and I are cautiously optimistic because we’re not at the end yet.
Obviously, this process is a lot, but it’s also brought my husband and I closer because we have had to grapple with the fact that we might not have kids. We’ve already had these challenging conversations and since we got pregnant, we are asking ourselves if this pregnancy is it for us? Neither of us can go through this emotional toil again.”
WHEN CAN YOU TAKE A BREATH ON THE INFERTILITY JOURNEY?
“At first, I told myself that I could take a breath when we got pregnant. We got pregnant and I still couldn’t take a breath and I told myself I would find relief when we got the results back from some of the early testing we got done. But now, I’m telling myself that it’s not until the second trimester that I can take a breath and that quickly turns into getting to the third trimester and viability. Honestly, I don’t think that there is a point at which I can let go of the worry and anxiety because it keeps getting pushed back to the next milestone.
For my husband, it’s also been hard to handle constant disappointment one after the other. After our second transfer, I took an at-home pregnancy test about seven days later and saw a very faint line on the test. I was so excited, started crying, and surprised my husband with the positive test that night. Two days later, I took another test, and the lines were gone. It ended up being a chemical pregnancy and we were devastated. I think it was at that point my husband didn’t know if this would ever happen for us and even when I got the positive test for this pregnancy that we’re currently 11 weeks into, he didn’t believe it.”
FINDING A WAY FORWARD AT THE LOWEST POINT
“Knowing that we still had options always helped me stand up and take another step forward on our infertility journey…I knew that we weren’t at the end of our infertility road yet”
“Knowing that we still had options always helped me stand up and take another step forward on our infertility journey. I knew that there was still another thing that we could try, and I knew that we weren’t at the end of our infertility road yet. I think my husband had almost accepted the fact that we weren’t going to have kids, but I wasn’t at that point yet. I knew that I could still do this. I had seen other people find success eventually and I held on to the thought that we could have that same story.”
BEST RESOURCES WHEN WALKING THE PATH OF INFERTILITY
“The biggest source of information, depending on what I’m looking for has been Googling and asking questions to those I’ve met on Instagram. Being able to ask people who have gone through this process about finding the best way to do a shot or the timing of things has been huge. The infertility Reddit page has a wiki section for different procedures where people have commented on their experiences and that has also been very helpful. Especially when I first started and I didn’t know what to expect, I would refer to those Reddit pages to learn the acronyms because I did not know what any of them meant.
I think my clinic provided a lot of information, but did I utilize it all? No, probably not. Their website provides detailed information on different procedures, the process, and medications and they offer different support groups online. They also have spa acupuncture next door that they recommend to patients going through treatment. I didn’t utilize most of what they offered because I found other sources more accessible, but I still think they did a good job providing information.”
SUPPORT DURING INFERTILITY
“My husband and my best friend have been my biggest supporters on this journey. My parents and in-laws have been very understanding but it can be difficult to discuss everything with my parents because it’s not the most comfortable thing to talk about with your parents. My best friend hasn’t been through infertility, but she is a clinical social worker, specializing in postpartum depression and I can text her for anything and not only does she understand but she has been a wealth of knowledge.
Now that we’re pregnant and at this point in our journey, I don’t feel like I belong in the infertility community as much. It’s a touchy subject to now be pregnant amongst those I connected with when going through treatment and I completely understand. But at the same time, I don’t feel like I fit in with a regular pregnancy group either. Women in those groups haven’t quite been through the same situation to become pregnant. My husband has a couple of co-workers whose wives are pregnant, too and I just struggle to relate with them and it’s just another way you can feel alone on this journey.”
WHEN HIDING INFERTILITY IS EASIER THAN SHARING
“I hid our battle with infertility from people at work for a long time. The days where you find out your cycle is canceled or you get the call that your beta test is negative, even though you knew it was going to be negative, are incredibly difficult. You get those calls, and you have to go right back to work and people just don’t get what that feels like or what you are going through. People don’t get how hard this is. There are days where I wish I could just go home for the day and say ‘I can’t do it. I can’t work.’ But if I did that every time I got bad news, I wouldn’t have a job anymore.”
FOR THOSE WALKING THE PATH OF INFERTILITY
“If you want to stop trying or feel like it’s time to stop, know you can absolutely make that decision and it is okay. I don’t ever want people to feel pressured to keep going because society says they should. People might tell you to just keep trying but at some point, you might say ‘no’ and that’s okay. I think that’s a really big thing that people need to hear sometimes, too. You can stop at any time if that feels right to you.
But if you want hope, I hope you can find it and can be inspired to keep trying.
However, and whatever you feel at any point in this infertility process is valid.”
When talking to Sarah about her story, she was cautiously optimistic at 11 weeks pregnant. You can continue to follow Sarah’s journey on Instagram @pastaandpineapples and see how she continues to uplift and support others battling infertility.
