Back in August when I was (or rather my six-week old baby) was diagnosed as being a “c-section ectopic pregnancy,” I scoured the internet for information (research is how I grieve, I guess).
Despite the fact that over 30% of US births are done by c-section, there is just not that much information for women who are going through what was a frankly terrifying and isolating situation. The first mention of a c-section ectopic was in 1978 and since then, there’s only been about 2,300 of them diagnosed. That’s pretty low, but I suspect this will increase as c-sections become more common.
I’m not a doctor and I don’t have any medical degree, but I am happy to share my history and methods for recovery. If you’re reading this because you are going through the same hell, I’m so sorry. This is a crap situation and you’ve been dealt a crap hand.
I’m not going to share how emotionally dark things were (sometimes still are) because those sorts of posts are all over the internet and what I found lacking were real accounts and plans of action and resources.
My OBGyn first raised the alarm at my five-week ultrasound. Despite 30 years in the field, he’d never dealt with a c-section ectopic so he wasn’t confident enough to diagnose it without a second opinion.
He referred me to a fetal medicine doctor who had a radiology background. Between that first ultrasound and my most recent, I think I’ve had about a dozen ultrasounds because of the level of uncertainty involved in determining a c-section ectopic (it literally comes down to a matter of millimeters).
Basically, if your baby implants less than 3mm from your c-section scar, things probably are not going to end well if you continue with the pregnancy (read: solid chance of bleeding to death). I’m glad I got so many ultrasounds because it’s not precise technology and all the billion doctors that worked with me wanted to be SUPER sure before they recommended termination.
The procedure involved injecting potassium chloride into the baby’s heart, which stops it. A few hours later, I was given a mega-dose of methotrexate, which is used to stop the growth of fetal tissue (it’s normally used for cancer patients). For many women, a second dose is required if your HCG doesn’t fall quickly enough.
Pretty much right after the first part, the bleeding started. And while it takes a hiatus every few days, it hasn’t fully stopped, three and a half months later. My HCG levels started at 40,000 and they are currently at 7. Since some doctors told me it was going to take at least six to nine months for my levels to get to 0, I feel pretty lucky.
One thing that has helped is that I eat like an eighteenth-century sailor (didn’t see that coming, did you?). I have more or less cut folate out of my diet as it will hinder tissue resolution. And folate is in friggin’ EVERYTHING. So I don’t eat a lot of green veggies or enriched bread/cereals. Keto has been a good diet to follow. I also drink at least a cup of strong green tea every day because it is a folate inhibitor and has really helped drop my numbers fairly quickly.
I’m sure this is probably not what doctors would recommend, but I want to resolve this pregnancy soon. The lovely British ladies of the UK Ectopic Trust have been more helpful than most of my doctors and I highly recommend using their site as a resource.
Here was one story that gave some very good insight and resources into the world of c-section ectopics.
Quick rant about women’s health: I cannot count the number of times I have been given conflicting medical advice and had to be my own primary care physician. This is a time where I wanted to be taken care of and not have to research my own health. That absolutely did not happen.
I was told by one nurse to take prenatals again, only to tell her that no, actually that would interfere with the methotrexate. I was told by one doctor that resuming intercourse a week after my procedure was ok…only to be contradicted by two other doctors that no fun was to be had until the bleeding stopped. Wonk. There are ten medical opinions on how long you should wait to start drinking, with the most liberal saying one week and the most conservative saying six months (it’s the same story with exercise). So between no drinking, no sex, and no bread, you are facing at least two or three joyless months to top off your (likely) depression.
Also, there is no consensus on recurrence (I have read and heard of odds that ranged from “low” to 40%). The fact is that current medical insight on c-section ectopics is…not great. Not enough research has been done to have a prescribed routine. And there is a 90% chance your OBGyn will not know how to handle or even recognize a c-section ectopic pregnancy.
I live in the Bay Area, which is supposed to have top doctors for everything, and the level of uncertainty my doctors have shown makes me scared for other women out there who have to go through the same thing. I would say that if you’ve had a c-section and are planning for another kid, bring it up with them ASAP. Advocate for a saline infusion sonohysterography to check for defects in your c-section scar (this is one reason my doctors said c-section ectopics can happen).
Ask all the questions. Be the annoying patient. It’s the only way we will be able to raise the level of care.
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