IBD & Fertility: Emotional Parallels
Last updated: November 2018
In my last post, I talked about my journey to motherhood with Crohn’s disease.
After nearly a year of trying to conceive naturally, our fertility journey transitioned from something we talked about only inside the walls of our apartment to something we spoke about often, and in public. My husband and I both went through a series of tests, hopeful we would obtain a diagnosis or a reason for our infertility. Unfortunately, all of our results came back within normal range. Emotionally, I was transported to the years before my Crohn’s disease diagnosis. I felt vulnerable, frustrated, and discouraged. While I did not want anything to “be wrong,” I desperately hoped to find out why we weren’t able to get pregnant.
Recommendations to move forward
With a diagnosis of “unexplained infertility,” our Reproductive Endocrinologist and Infertility Specialist (REI) explained her recommendations and a plan unfolded. Much like my IBD experience, I felt stronger, braver and more reasonable when I knew what the next steps were. For example, years ago before I fully failed on 6-MP, I knew that my doctor wanted to try Entyvio next. With infertility, we were scheduled to start with Intrauterine Insemination (IUI), and if we were still not pregnant after at least three successive cycles, we would move on to In-Vitro Fertilization (IVF). Although the intended outcomes differed (better health vs. carrying a child), the feelings were so similar to me. Both IBD and infertility were filled with the same set of emotions: Hope. Fear. Heartache. Cautious Optimism. Patience. Preparedness.
This is nothing compared to what I've been through
Compared to the medical tests, procedures and treatments I have experienced in relation to my Crohn’s disease, the IUI experience has been gentle and uneventful. The cycle starts with a baseline ultrasound at the beginning of your period, which confirms that you can start the oral medication to stimulate an increase in reproductive hormones. About two weeks later, you return to the clinic for a mid-cycle ultrasound, and if given approval, the nurse administers a subcutaneous injection in the belly to trigger ovulation. To be honest, I have continually been shocked that these medications have come with minimal side effects for me. That’s not the life I have experienced with any medication related to my IBD, and I found myself perpetually grateful that I had already lived through harder experiences.
The actual IUI procedure itself was fairly anticlimactic. Again - not something I’m generally familiar with as a Crohn’s patient. Typically, most GI procedures are incredible invasive, require significant prep, and leave me wanting to sleep for a week.
The waiting is the hardest part
To be honest, the hardest part of the process for me was what came next. After the procedure, you cannot take a pregnancy test for two weeks. The waiting was incredibly anxiety provoking. It felt like every time I had waited for the pathology reports from a scope, or the results from labs, or the doctor to call me back. I couldn’t do anything but be patient. I thought about all of the things I’ve waited for at home and in doctors offices or hospital rooms. What I was hoping for during this time was no different than all of those moments - I just wanted good news. Although I tried to build in activities and moments to manage my emotional stress, the anxiety caused my stomach to misbehave. As any IBD patient can imagine, this caused me additional anxiety.
Worrying about a flare
I started worrying about how a flare would impact the chance of the IUI succeeding, and more importantly, our ability to continue fertility treatments during this season. I am so so grateful to say that I have not yet ended up in that position, although I continue to hold my breath during this process that my disease activity remains minimal. This is where having a solid care team is of high benefit, and maintaining consistent communications with my specialists vital.
The IUI's were not successful
Our first IUI was not successful. When my period arrived, I felt such deep and significant heartache. We had done everything right, and yet, we were still unlucky. What I realized though was that I had been in this place before. This place always only had to do with me and my health, and not my husband or the child we were trying to create, but it was still a familiar place. Devastation. Disappointment. Frustration. Fear. I had already cultivated coping mechanisms during trials and tribulations with my Crohn’s disease, and I felt relieved knowing I didn’t have to pave an entirely new path in these moments.
Our second IUI also failed. As a somewhat professional patient by this point in my life, I reflected on the idea that completing a third cycle in exactly the same way felt repetitive and was unlikely to succeed. Based on my history, our REI instituted an autoimmune protocol, adding a low dose of prednisone during the first half of my cycle, and a combination of antihistamines from the day of the IUI through test day.
We did not get lucky with our third IUI either. Let me tell you that the waiting period - it does not get any easier with time or repetition. And the disappointment, while no longer a surprise, still burned.
Moving forward with IVF
My husband and I will now be moving forward with IVF. At the end of the month, we will meet with and ask questions to all of the individuals who will be involved in that experience for us - our doctor, the nurses, the specialty pharmacy, and the financial advisors. It will also be a chance for us to map out our IVF timeline. Having a plan remains a vital part of my being able handle the unpredictability of my body and my health.
The emotions mirror one another
This past year I have learned so much about the ways in which IBD and fertility mirror one another in the thoughts and feelings they induce. Twelve months ago, I never could have believed that another experience in this life might emotionally feel like Crohn’s disease has. I never thought I would say this, but I am beyond grateful for the life lessons IBD has taught me, for they have truly prepared me as much as possible for this difficult season in our lives. I guess that’s the thing about silver linings - they reveal themselves when you least expect them.
Does living with IBD impact you financially?