Finding Peace

We extensively researched practices, providers, statistics, reviews from patients, and landed on a private practice with a provider that happened to also be highly recommended by my endocrinologist. We did our preliminary testing, which truly should have clued me into the level of invasive procedures that would follow in the years to come.

When we met with the doctor for the results and feedback, he believed I had Polycystic Ovary Syndrome (PCOS) on top of Hashimoto’s. The “good news”, he said, is that losing weight would help, and suggested that I do so as fast as possible. He said this as though I were completely unaware of my size. As though I were to blame for my weight. As though it were so simple. If I wanted a baby, I needed to get control of this “problem” that he identified as being the biggest barrier to success. 

Forget my incredibly dysfunctional thyroid and new diagnosis of PCOS, which we know leads to insulin resistance and weight gain. It seemed like he was indicating that willpower alone could fix this. Salads for lunch. Walks in the evening. I also noticed he spoke almost exclusively to my (male) partner during this feedback session as I sat in silence, processing and holding back tears. 

Doctors had been telling me to lose weight my entire adult life. No matter how well I ate and how much I exercised I had never been a “normal” weight. I now understand that the interplay between my Hashimoto’s and PCOS meant that losing weight would never be an easy task for me. Sitting in that office that day, I did not yet understand this. I knew absolutely nothing about PCOS. I also knew absolutely nothing about how this journey would shape me as a person over the next few years. What I did know was that I did not feel good. 

I did not appreciate the way the doctor spoke to my partner rather than me, nor his determination that weight loss was the solution. It was not the message that hurt me in the end, but rather the lack of empathy, the lack of respect, and the clinical tone in which it was delivered.

Unfortunately, this initiated me into a journey that would be full of similar experiences. I don’t know how many people have had the experience of being told that they are the sole reason for their inability to obtain the one thing that they want the most in the world, but it breeds a level of shame and self-loathing that I cannot even begin to articulate.

After that visit, the fertility coordinator never answered the phone or called back to discuss options with us, so we decided that this practice and doctor were simply not a good fit.

We pursued another doctor, and luckily they didn’t make us repeat diagnostic testing. We waited a long time for an appointment and as we waited, we sought support.

My partner and I began to attend Resolve New England (RNE) peer support groups, and it was such a turning point for us. Able to share stories and circumstances with other couples, we did not feel so alone. Attending RNE groups together was such a lifeline for us during those months. 

When our appointment arrived, this was a completely different experience from the very initial contact. Our new provider gave us a brief education about PCOS and presented an action plan. I asked her about losing weight. She said “it can help” but wasn’t necessary. My thyroid levels had finally stabilized. We did several medicated cycles with monitoring, and on the third cycle we became pregnant after about 3.5 years of trying.

All things considered, our pregnancy and delivery were uncomplicated. Truly, they felt like a breeze after years of thyroid fluctuations, which in my experience were far more impactful on daily functioning. 

This narrative somehow seems insufficient to detail all the moments of pain and disappointment that were interspersed throughout our primary infertility journey. All of the tears that were shed. All of the anger and resentment and jealousy. The commutes with endless crying. The dread when we reached the bottom of the test strip box that we never expected to need to buy, only to have to buy and open yet another. The glib comments from friends and family that sent us reeling emotionally for days on end. The pregnant women at the grocery store. The people who complained about their kids. The friends we pushed away because they were insensitive and did not even try to understand. The fights and strain on our marriage. The balancing of the appointments on top of full-time work.

If I was asked to speak about my journey a few years ago, this is what I would have focused on: all the ugliness, all the pain, all the bitterness. I do think the perspective that the second part of our journey gave me is largely shaping how I remember the experiences we’ve had, and how I choose to see them in the greater context of my life. 

When we decided to try for another child, we knew we'd have to work with a reproductive endocrinologist again. Learning that our doctor had retired, we were crushed at the prospect of beginning seemingly from scratch. We began our research, narrowed down our options, and made an appointment for a consultation; the wait began. I started attending the RNE Trying For Another Group, trying to get support in place from the beginning this time.

At the initial consultation, I immediately liked our new doctor. Though a bit informal, he was warm, clearly patient-focused and seemed like he would be a great fit. He recommended we start with medicated cycles right away, given our previous success and knowing that my thyroid functioning was in a solid place.

His protocols for monitoring were different and more intensive. Where previously we had done mostly bloodwork and a few ultrasounds, his protocols required nearly every other day ultrasounds and bloodwork; the logistics of managing these appointments with a toddler, on top of a full-time job, were challenging. 

During that first cycle, the practice’s fertility coordinator left, and we found ourselves yet again in a sudden black void of communication. We completed three cycles with this doctor, and I did not respond adequately to the medications this time. At this point, I was in tears constantly, anxious due to the lack of communication, as well as struggling to manage the logistics and expectations of their protocols. 

Costs were adding up quickly, and did not appear sustainable for us financially and emotionally. I leaned heavily on the RNE group during this time, and the connections that I made there helped sustain me on a nearly daily basis.

We were past the point that had been successful last time, and nothing was working. It was very difficult to realize that this time would be much more of a marathon than a sprint. There was no explanation or hypothesis shared regarding why things were different this time, which only added to the frustration. 

At this point, I attempted to have a heart-to-heart with the doctor, who simply suggested that we move to IVF immediately. We did not have any coverage for IVF, so I told him that it was not a consideration at this point and asked about alternatives. He said that we could try an alternative medication but did not foresee this being successful. We discussed an IUI cycle as well, but we had limited coverage for IUIs and wanted to reserve them for the worst-case scenario. I did not think we were at that point just yet. We probably were, but I was not ready to acknowledge it yet.  

During our attempt to coordinate next steps, yet another fertility coordinator left the practice, and we once again hit a communication void that was simply unacceptable to me embarking on this next, more extreme, leg of the journey. I could not fathom how they were able to simply leave patients in the dark, leave questions unanswered, not offer logical explanations, and charge an absolutely astronomical amount. We were constantly assessing the financial commitment of this process, which was so much higher already than during primary infertility. On top of poor insurance coverage, the cost of child care for our toddler, and the flexibility in my work schedule to accommodate appointments, it would not be sustainable for more than a few more cycles. We really needed to weigh our options carefully and decide on next steps. Because we couldn’t reach anyone at the practice, we were at an impasse. My most salient emotions were helplessness and anger. 

Around this time, I distinctly remember sitting in an RNE group session, and while encouraging other attendees to advocate for themselves, I realized that I needed to take my own advice.

If my experience with this doctor’s office was not what I needed it to be, then it didn’t need to continue. I attempted to share my frustrations with staff and even with my doctor and things did not change. At that point, I needed to think about myself as a customer; when conceptualized this way, it was easy for me to acknowledge that I had every right to take my investment elsewhere. I had done it before, and I could do it again. 

We made our way back to the hospital where the RE who gave us our daughter had practiced, and decided on a new provider after extensive research. He reviewed our records, had us do some updated testing, and we developed a plan. I explained upfront my expectations for communication and scheduling constraints, and asked for assurance that they would work with me around these. They agreed, and we proceeded. Ironically, his first thought was trying the alternative medication that the previous doctor insisted would not be helpful, in combination with injectables, rather than jumping to IUI or IVF. 

I ended up being responsive to that medication, but it required extended cycles in order to do so. This meant more ultrasounds, extra bloodwork, sometimes up to 4 days a week to monitor follicle sizes before triggering. After 3 ultimately unsuccessful cycles with this combination, we shifted our conversation to IUI, with high hopes. Initial results were optimistic, and my blood work indicated a “borderline” pregnancy. 

The next few weeks were some of the most difficult that I had endured thus far- a true rollercoaster of emotions. There was a lot of bloodwork to monitor the HCG levels. They then suspected an ectopic pregnancy, which was a frightening prospect. An ultrasound was done to rule that out, which ended up confirming the presence of the gestational sac. I broke down crying at that appointment  - because it actually meant that there was a chance.  

They planned to continue to follow us with bloodwork, and later an ultrasound to check for a heartbeat. I spoke to a lot of other people, did a lot of research, and heard so many contradicting stories. Ultimately, it was possible that the pregnancy would continue to develop without complications and also possible that it would not be viable. The only way to know was to wait and monitor.

That is what we did, through Mother’s Day weekend, where I tried my best to be present for my daughter when all I wanted to do was to stew in my anxiety and uncertainty. I felt physically pregnant and wanted so badly to be able to embrace that.

Ultimately, unfortunately, the pregnancy was not viable, and we were told to wait until my body resolved it naturally. It did not, so they scheduled a D&C for us. I took 3 days off from work for what I framed as a dental procedure. 

I cried until the anesthesia kicked in and started again as soon as I woke up. My partner took over the day-to-day and just let me process. We cried together at night when our daughter went to bed, making a concerted effort to put on brave faces for her.

We decided to take a break from treatments, as we had now done over 7 cycles back-to-back over the course of the last year or so. 

I decided that I would give myself through the end of the year to decide what I wanted to do. While looking into insurance coverage options for IVF, I was living my life as it was, focusing on work and my daughter, as well as reconnecting with friends and activities I had pushed aside out of necessity.

The break gave us a chance to catch our breath and really lean into parts of our lives that we both missed and had neglected. It gave us the chance to rebuild what had felt so fractured during the last year. 

During this time, I tried to really weigh my emotions and thoughts, to determine if I really wanted to move forward on this journey. I considered everything- my partner, my daughter, my health (physical, psychological), my career, my lifestyle, and finances. As a person who is not great with uncertainty, I felt this ever-present need to make and formalize a decision.

When I took the time to focus on what I did have, versus what I did not, I was able to see my life and my family as enough. That I was no longer willing to risk the life that I had for a life that might not ever be possible. 

I stepped into this sense of resolve and acceptance, and have steadily grown into those feelings over the last several months.

I have found peace with one child.