Inside My First RI Appointment
I walked in anxious and uncertain. I left believing there might finally be answers.
Lucky breaks don’t usually happen for our patient population, but I scored a big one about a month after submitting my paperwork to get on a waitlist for a reproductive immunologist: The office had a last-minute cancellation, and since I was local, the receptionist called to ask if I would be able to come in the very next day.
“Yes!” I said, without even checking my calendar. Whatever was on the schedule, I was going to make this work. I had been anticipating a six-month wait to get in — which may as well be YEARS in the fertility world — so I was thrilled to get a jump ahead of the game for once.
Despite how eager I was to get in, I walked into the building the next day carrying a tremendous amount of anxiety. I had no idea whether this moment would bring meaningful answers or simply introduce an entirely new layer of confusion.
The initial appointment was an hours-long affair, beginning with 7 a.m. labs where they collected a whopping 25 vials of blood from my arm. When all those people online told me RI testing goes beyond that of an RE, they weren’t kidding. I also underwent a specialized ultrasound, followed by meetings with both the nurse practitioner and the doctor.
Up until this point, every medical professional I’d encountered seemed stumped by my pregnancies. The same questions kept surfacing: How could there be two live births followed by three consecutive losses? What changed?
My experience didn’t fit neatly into anyone’s framework.
But after hearing a brief summary of my past, this doctor responded without hesitation:
“This makes sense.”
I felt myself recoil in surprise, startled by how quickly and confidently she connected the dots. For the first time, someone was looking at my history as a coherent pattern instead of a medical mystery.
She went on to explain how I likely experienced a mild form of preeclampsia during my first pregnancy, which became more severe during my second. By the third, she believed my immune system had learned what was coming and reacted more aggressively each time, stopping the pregnancies before they could progress further.
She pointed to blood pressure concerns that had surfaced during my first two pregnancies — warning signs that had been downplayed at the time but suddenly looked much less isolated in hindsight.
Reviewing my ultrasound report, she suspected I had adenomyosis and described the resulting immune response along with the problems that could arise with blood flow and placenta development. She spent a full hour with me and my husband, answering every question we threw at her and even sketching diagrams to help illustrate what she believed was happening inside my body.
By the time we left the office, I felt something I hadn’t experienced in a very long time: relief. It finally felt possible that there was an explanation for everything we had been through.
And remarkably, this was all before any of my lab work had even come back.
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Oh, that's interesting. I had HELLP syndrome with my one (and only) baby, which is a severe form of preeclampsia. I didn't want to get pregnant again after that. Partly because I was at high risk of getting sick agin, but also because the healthcare system was awful at treating me promptly and compassionately. I didn't trust the system enough to risk my life again, or a future child's life. (My daughter was in the NICU). In hindsight, this was wise of me: My blood pressure never returned to normal -- thirteen years later, I'm still on 3 blood pressure medications. I'm a "one and done" mom and that's been OK with me.
At the time, I was told it preeclampsia is thought to be (in part) an immune reaction to the father/foreign bodies. My mother-in-law also had severe preeclampsia, and you'll often see that pattern, genetically -- handed down via the father's pregnancy history, and not the mother's (no one on my family's side had it).
Doctors used to tell women "it's a disease of first pregnancy," and that subsequent pregnancies should be fine, but we now know that's often wrong -- it can happen again w/ any pregnancy, and the biggest risk factor to develop it is if you had it in a previous pregnancy.
I look forward to part two on how you navigated this!