How AS and Pregnancy Made Me A Medical Unicorn
Deciding to start a family while navigating life with ankylosing spondylitis wasn’t necessarily a hard decision. My husband and I recognized that we may be embarking on a challenge full of unknowns and unpredictability, but we were excited. What we didn’t realize was how uncommon my situation would become by being pregnant and with active/flaring AS symptoms--I was apparently a bit of a medical unicorn.
Rheumatologists, family planning, and OB/GYNs
I had countless conversations with my rheumatologist about family planning, and whether or not I would stay on my biologic medication while pregnant. I worked hard to find an OB/GYN who had experience with women with ankylosing spondylitis. I preemptively reached out to my therapist to set up appointments knowing that the foreseeable future may not only be physically challenging, but mentally difficult as well. I was excited and felt like I had all of the tools in place to navigate pregnancy--but over the last 9 months my experience has been anything but predictable and easily navigated.
My biologic medication
Before even conceiving I had decided that I would not take my biologic medication through pregnancy. While there are many doctors who say it is safe, and many women who take their medications throughout pregnancy with no complications, I knew that, personally, it was not a risk I was comfortable taking. When I found out I was expecting, I stopped injections and let my rheumatologist know. He was excited for me, and reminded me that most women experience a remission in AS symptoms during pregnancy.
He encouraged me to call at any point with questions, but otherwise was happy to hand my care over to my obstetrician, and not plan on seeing me until I was ready to get back on medications postpartum. I had found an OB who had experience working with women with AS, and I was feeling optimistic.
My first trimester
My first trimester was by no means a breeze--I was constantly nauseous, and felt more fatigued and exhausted than I have ever, but I was managing. Towards my 12th week of pregnancy I started asking questions about how my AS, specifically my SI joint fusion, may impact the remainder of my pregnancy, as well as my delivery.
I was initially told by a nurse that the SI joints need to expand to fit a baby through, so she wasn’t sure what that meant for me (not a very reassuring answer by any means). We set up an appointment with maternal fetal medicine (MFM--the high risk pregnancy doctors) and I remained open minded.
Unfortunately, the appointment was more triggering than reassuring, as I was told that “you’ll be fine” and that the nurse was wrong, my SI joints played no role in delivery. I was being given conflicting information, I felt dismissed, and I felt like my concerns were being brushed aside--something I know many of us with chronic illnesses deal with all too often. I left the appointment in tears and feeling more afraid than excited about the rest of my pregnancy journey. How could two experienced medical professionals not be in agreement on how my AS would impact me?
Thankfully, my obstetrician heard that I “seemed upset” leaving that appointment, and when I next saw him reassured me that I didn’t need to work with MFM anymore. He was calming and compassionate, and assured me that he would work with me to find out as much information as we could, and do whatever made me feel the most comfortable and supported during this journey. I had honestly never felt so much relief and understanding leaving a doctor’s appointment, and the fear I had been feeling subsided just a little bit.
Then, a flare
I entered my second trimester feeling anxious about the seeming lack of knowledge surrounding how AS could complicate my pregnancy and delivery, but also feeling like I had found a doctor that would support me through it. Unfortunately, rather than staying in remission like I had expected, by AS symptoms decided to go into a major flare that would last for months, and the medical team that I had just begun to feel comfortable with didn’t recognize AS as the root of my pain.
How long was your longest flare?