Fertility Story – Part 1: The Diagnosis

A wintery night in Chicago.

This is the first installment of six about our struggles with infertility. This is our story, nothing more, but we share it to add another voice to this often unspoken struggle.

Part 1

As part of my wedding to-do list, I called my gynecologist and made an appointment to remove my IUD. My husband and I were entering into a marriage, and we wanted to get started on the next part: having a baby. When I told my primary care physician that I was hoping to be pregnant within the next few months, she instructed me to not go off birth control until I was ready. “It could happen very fast,” she said with her lightened European accent. We waited until after the wedding, in June of 2018, but not long. I had the device removed not even two weeks into our life as husband and wife.

We have been trying to have a baby since. I have attempted to write this story before, even hinting in other blog posts and offering a condensed version on social media, but often the emotion and heartbreak overwhelms me to abandon a half-completed Word Doc. I have talked about our fertility struggles to many friends and family, but I haven’t been able to put the whole story together, to look at it piece by piece. Yet, I keep feeling that writerly call to do so. I have to get this story out. Maybe it will help someone else, but hopefully it will help me.

This is our story as honest as I could write it. If you or someone you know struggles with infertility, you may recognize pieces of them in these words, but please know that this is my story alone. Infertility impacts about one in eight couples, and it stings in many ways. From infertility after one or two children to those who don’t have the resources to go beyond a diagnosis, and the fertility world is not just for married heterosexual couples but also women wanting a baby without a man and same-sex couples. It’s a cruel reality, one that comes with layers of heartbreaks and hefty bills, but I am writing this to claim this situation as my own.

Because it is.

When we started trying to conceive, I was on the precipice of a major life event: graduate school. I was planning to quite my salaried job with good medical benefits to enter into a three-year graduate program to become a therapist. I was nervous about the prospect of having children while in school and whether we could afford it on just my husband’s income. Also, I wondered if I should stay at that job and focus on becoming a mother, knowing I didn’t love the work, but the salary, benefits, and 9-5 life would be more ideal for motherhood than a graduate student. It even came up in a psychic reading I had as part of my bachelorette party with a few close friends, and the woman guaranteed me that going back to school would not disrupt my path to motherhood.

Also, there was my age. I was approaching 34 and would be 36 by the time I graduated. I was terrified that if we postponed pregnancy until after I graduated, time would steal my ability to get pregnant. I would never forgive myself if I let that window close.

So, despite my hesitations, we began trying to conceive.

Our trying in those first few months was unpressured, without specific strategy. We weren’t charting cycles or using ovulation strips, rather just doing the thing that we thought would bring us a baby. We had no reason to question that it wouldn’t happen for us, easily and naturally.

Then, in November, my husband lost his job. This was our safety net, the reason I could quit mine and go back to school. So much of our world came crashing in, including trying to have a baby. We no longer had health insurance or a steady income. Verbally, I said that we had to put pregnancy on hold because I thought that was the responsible thing, but it was not what I wanted. Even at 34, I felt like I couldn’t waste much time, but we were also not in a good financial or emotional state. This was a colossal blow to our marriage and our life together. We backed away from the baby idea for a bit, but I hoped the new year would bring another job and a pregnancy. 

We spent most of 2019 crossing our fingers that this month be the month. We were more precise with our efforts some cycle versus others, and I always kept close tabs on what day my period was supposed to start and stalked any potential pregnancy symptoms. My school did not offer health insurance, and the jobs my husband did get were without benefits. Family agreed to help us go through the marketplace to get insurance. It was unspeakably expensive, and not very good, but we knew we needed it.

We kept trying to have a baby because we both wanted one, but each month we didn’t get pregnant, I was met with conflicting emotions, devastated for another month gone but also relief. It seemed so reckless that two people without a steady income would try to bring a baby into this world. There was no guarantee that we could have supported a child, but that wasn’t enough of a reason to stop trying. We kept reassuring ourselves that people with less figure it out, and so could we. Yet, that brought only so much comfort.

Around me, though, pregnancy seemed to come easy to others. People getting pregnant on accident or on their first or second month of trying. Many of these were friends and family, who I was so happy for, but their good news was a symbol of what I couldn’t have. A pregnancy announcement could pull me out of a good mood and remind me how shitty my reality was. One particular month, I had been hopeful when my period was a day late, but then it came. I was sad but used to it by this point. Next month, I told myself. An hour later, I received an email from a former colleague, who had often declared she would never have kids, saying that she was pregnant. I cried so hard my eyes stung. I turned off my phone and buried myself in my bed for hours, and when I eventually restarted my phone, I had a text message with another pregnancy announcement.

We should have gone to the doctor at this point. We were over 30 and had been trying for more than a year, which is six months beyond the recommendation for a couple of our age. We did have health insurance, but it was limiting and hard to use. Also, I was afraid that if we did go and find out that something was wrong with us, we would not have the resources to treat it. Instead, we continued to try to get pregnant on our own and failed without having the knowledge of what was truly going on for us.

In early 2020, things started to look up. My husband got a job and new health insurance, and trying to having a baby, including seeking help from fertility specialist, became our top priority. He was at that job less than a month when the pandemic hit. He was furloughed after five weeks of employment, but he could keep his health insurance in the meantime. It didn’t matter, though, we couldn’t get an appointment due to stay-at-home orders. Eventually, he was laid off. We were back in the exact same position as we were nearly two years prior.

All this time, I was incredibly worried that something was wrong with me. What if my egg supply had already gone bad? What if I was suffering from PCOS or endometriosis? What if having a baby wasn’t something I could physically do?

We did get insurance, again, thanks to family, and I am going to go on a quick rant about American healthcare. It should not have been this hard or this expensive to have basic health provisions. For my husband and I, through the open marketplace, with a tax credit, our insurance was over $800. We had a slightly lower deductible than other less expensive plans, but the difference was not much. We still had to pay a lot out of pocket despite having this insurance. Our income was two part-time, minimum wage jobs. It’s absolutely insane that we have allowed our healthcare system to get this broken and continue to let Congress do absolutely nothing about it. Healthcare should not be tied to employment. It should not only be for those who can afford it. Nearly every person I know is one major health crisis away from completely wiping out their bank accounts. This is not how an advanced country should operate. We were incredibly lucky to have family that can help us, but many, many more are not. As a society, we have to do better for each other.

Anyway.

In the later part of 2020, we attempted to learn more about why we weren’t getting pregnant but ran into several roadblocks with our insurance. We had an HMO initially and had to switch providers several times to talk to someone about fertility. Eventually, I met with an OBGYN who diagnosed me with infertility and referred me to a fertility clinic. However, it took two months for the clinic to approve our referral because we had an HMO, despite me calling nearly every week. They were rude and uncooperative, and even lied to me about not having my paperwork when they did. This came at the end of 2020, during open enrollment, so we switched to a slightly more expensive PPO. In January 2021, we were finally able to get an appointment with a fertility clinic (definitely a different clinic than before).

Our first appointment was a virtual visit with the fertility specialist. He listened to our story and agreed that something was amiss. He explained the routine tests that we would need to take to identify the possible problems, and then we would look to solutions.

The first visit to the fertility clinic was bizarre. The clinic was nestled right next to the Chicago River and in an office building that was mostly quiet now due to many employees still working at home. I checked with the security guard who was doing COVID screening, walked past a waiting room, to another check in spot, and took a seat at the second waiting room. Several other women, dressed in parkas and snow boots, were sitting, spatially apart, and scrolling on their phones. I wondered what their stories were. Were they younger or older than me? Had they been going to the clinic for months? Were they closer to a baby then me? Together, we seemed sad and broken. Something was wrong with us that we couldn’t conceive naturally. I didn’t want to belong to this club of women, and yet, I assumed they had more resources and time, so I also felt like they deserved to be there more than me.

My first appointment was an ultrasound and blood work at the beginning of my cycle. Then a saline ultrasound, in which they shot water into my uterus to determine if any of the fallopian tubes were closed. The last appointment was blood work to confirm that I ovulated. During this appointment, I was also supposed to do a test to assess whether or not I had endometriosis. Before I started any of these diagnostics, I reached out to my insurance, and they confirmed that all procedures were covered. However, the nurse who called me to schedule this procedure said that this test was not covered and would cost us $700. If I only knew that this would not be the last time an unexpected cost of several hundred dollars would pop up and be barrier to learning the whole picture.

The first gynecologists I saw, when we had the HMO, said that she was pretty convinced I had endometriosis. Given my history of painful periods, the inability to get pregnant, and this consistent nausea that has plagued me for eight years, endometriosis was a likely diagnosis. She wanted to do a scope to determine that and then we would look into the fertility issues. However, she was associated with a hospital that was closing and the one she moved to was not currently covered by the medical group on my insurance. I switched medical groups and had to go to a different gyno, who directed me towards figuring out the fertility first. Our fertility doctor often includes this test, which is different than a scope, in his initial tests because endometriosis is very common but under diagnosed. I really wanted to know if I had this disease, because I think it could have help me understand so much. However, the medical bills were already piling up, and I knew that paying for this test would limit how much we could pay on treatment. It really, really sucks to have to make medical decisions based on their cost. This really should not be the case, but it is. So, after talking to my doctor, I decided not to have the test done. He said that if we wanted to pursue IVF in the future, I would need to do it, but for now, we were OK with holding off.

While I was doing these tests, my husband had to do a specimen sample. The first came back with a couple of low numbers so they order a second and then a third. Once all of our test results were back, we had another meeting with our doctor.

The good news came first. My egg supply was excellent for someone my age and there were no blockages in my fallopian tubes nor polyps in my uterus. My follicles also looked great. The nurse practitioner said that I have “a textbook uterus.” This was a major relief for me and eased my mind about any complications that could be caused by my age.

The bad news, though, was that two of my husband’s three numbers that they measure in sperm were down, which can impact fertility. The doctor’s recommendation was to start us on a unmedicated IUI cycle and then look at using medication to help release more eggs to increase our changes. If those treatments didn’t work, then we would look at IVF.

Our official diagnosis was infertility, male factor.

I had always suspected that IUI would be where we started, so I was fine with this news. It was also assuring to not only have answers but a plan. I had done a genetics test at my last appointment, so the doctor said we needed to wait for those results before we could start. I was in the middle of a cycle at that point, so we crossed our fingers that the test results would come before my next cycle.

My period was four days late, which lit my hope. Maybe we wouldn’t have to go through all this after all. It did come, though, and so I went to the clinic for baseline measurements a few days into my cycle. I started to notice that instead of easing up, my period was getting heavier. A nurse called with my results and said I needed to come back for more tests because my hcg levels were high. Without thinking, I asked her why they would be high, and she paused and stammered for a bit, “Well, it could be a possible positive pregnancy test.” This was on a Friday, and I spent the entire weekend in bed, with intense cramps and heavy, clotty bleeding. 

While we can’t be sure because we never had a positive pregnancy test, we believe this was an early-stage miscarriage. I didn’t feel like I could be upset about it because we never had any proof that I was pregnant and it was so early on, but my body went through something that weekend that it never had before. It felt so cruel that that was the closest we had ever been to a pregnancy, and yet we were hopeful that this meant that we could get pregnant. We would just need some help.

By Monday, my levels were back to normal, however, we finally received the results of my genetics test. I am a carrier for a rare, but deadly, kidney disease. Because of this, my husband would also need to be tested, and we couldn’t move forward until his tests were back. Meaning, we would be delayed in starting IUI at least another cycle.

I cried so hard that day. To make matters worse, my husband received a job rejection that was pretty devastating. Here I was, in the middle of trying to graduate and study for my licensure exams, and everything in my personal life was falling apart. It felt like another kick in the teeth after an incredibly difficult two and half years.

However, we had to keep going. I had to focus on school and my internship, and my husband did his genetics test. Luckily, it came back completely clear, and we were given the go ahead to start IUI. All we need now was for me to start my next cycle.

This one was two days late. It’s hard to resist the temptations to take a pregnancy test because, as the Internet says, at this point one can test. However, I have had so many negative tests in the last two years that I wondered if I will even believe a positive one. There is nothing so heartbreaking than the shade of white of a pregnancy test. You hope to find glimmers of pink or blue, but it’s just white. White. White. White.  So, I decided I would test on day three of my missed period, but when I woke up, it had arrived.

It was OK, though. This time we had a plan. I went to several monitoring appointments, including three in one week. My arms were bruised from all the needles drawing blood. Finally, on a Friday afternoon, I got the call from my nurse.

“Your follicles are ready,” she said. “We are ready to do the IUI.”

Published by The Running Therapist

A runner, writer, and therapist in training.

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