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This time last year I was starting the (unfortunately long) process of getting diagnosed with Cholestasis of Pregnancy (ICP) at 33 weeks pregnant. I’ve only written very briefly about this part of pregnancy…and honestly, I didn’t even talk to that many people about what was going on at the time. But I wanted to share a bit more detail in order to raise awareness about ICP. So today, a year later, I’m finally writing down a little bit about my experience.
ICP is a liver disorder specific to pregnancy. The telltale symptom is extreme itching. Although there are no long term health risks to the mom, it has some pretty scary risks for the baby. Doctors advised me not to research too much into it. But in the information age, it’s impossible not to google things…which was both reassuring and terrifying in turn.
Besides, I had already researched before I ever went in. I had been experiencing intense itching for about 2 days when I finally went into L&D to get checked out. I was so certain I had ICP by this point, but I was hesitant to acknowledge that something was wrong.
The L&D triage team did all the routine tests. It honestly felt a little silly coming in when my only real symptom was itching. I tend to downplay issues which in a medical setting is not always the wisest course of action. I rationalized the upper-right quadrant pain because I’d had little baby feet kicking that particular area for weeks at that point. They told me it was probably just allergies and sent me home saying they’d call that afternoon if my liver enzymes were off, but not to worry. Just to go home, take a Benadryl and use lots of lotion.
I knew it wasn’t allergies. But I didn’t get a phone call that afternoon. Thankfully I had an ultrasound scheduled with Maternal-Fetal Medicine for an unrelated weird pregnancy issue the next day. So when I went in, I brought up my concerns with my MFM doctor. She agreed with me that this did not sound like allergies. She reviewed all of the lab results that were in (the main one needed for an official diagnosis wouldn’t be returned for another week) and saw that my liver enzymes were extremely high. Within a few minutes, she had prescribed me a liver medication that would help with the underlying issue and the symptoms, and took me to the prepartum testing department so I could schedule regular fetal non-stress tests and ultrasounds, and talked with me about the importance of early induction.
Getting diagnosed early with ICP is so important because the risks go down significantly with treatment and early induction, but as a mom, getting an official diagnosis can also be scary. I was glad to have a definitive answer to the weird symptoms I was experiencing. But it was a really hard answer to process.
As a woman, you always hear about how your body is made for pregnancy and giving birth, that your body knows best…but my body didn’t seem to get the memo. In a way, having ICP makes you fear your own body. The womb should be a safe place for your baby, but with ICP that isn’t always the case.
To make it worse, I would hear people say things like, “oh doctors always say you need to be induced.” Or “there’s no reason to induce early, your baby knows when they’re ready.” Or “I was told to induce early, but I didn’t and my baby is just fine.” I did not have the desire to correct them at the moment. To tell them I was acting in the best interest of my baby. Or to ask them if they made their decisions in the face of a 10% risk of stillbirth. I know their experiences are all anecdotal and had nothing to do with my situation, so what were meant to be words of comfort were honestly just annoyances that I tried to overlook.
Not to mention, the itching is no joke. There were times when I was literally crying in frustration because the itching was ceaseless. (And if you know me, you know that I RARELY cry…even with pregnancy hormones!) There were times of anxiety because I was afraid for my perfectly healthy baby who was trapped inside my perfectly unhealthy body. The itching was aggravating, but the worry was agonizing. Even now, a year later, when I get just a normal itch I sometimes feel anxious. Even writing this I’m so itchy and tense.
I lived with ICP for one stress-filled month before Susie could safely be evicted at 37 weeks. This month last year was one of the hardest months of my life emotionally and physically.
I am so thankful for good doctors and nurses who took good care of me and Susie during that month of lab work, biweekly nst’s, weekly ultrasounds, and ultimately a safe induction and delivery. I’m so thankful for medicine that gave me some relief from the itch during those last 3 weeks of pregnancy. I am so incredibly thankful for a healthy 11-month-old baby girl. Not all mama’s diagnosed with ICP can say the same thing.
All this to say, future mamas trust your gut! If something is off…even something as innocuous as itching, go to the doctor! Itching is NOT a symptom to be overlooked. If you have symptoms of ICP, advocate for yourself and get the testing you need. And follow up on your labs because when they say they’ll call you if anything’s wrong, they don’t always mean it🙃! Being proactive and cautious is so important, especially if you are pregnant!
If you want some more info on Cholestasis of Pregnancy ICPCare.org is a great resource.