7 Things Someone Who's Had an Ectopic Pregnancy Probably Understands

Something I hinted at in an earlier post was that it was a tough month of April.

I hesitate to share things while I'm experiencing them for a variety of reasons, many of which are probably pretty common. We all are more inclined to share tough experiences once we're okay again, once we can say, "This was hard, but I'm better now."

This is probably all the more true with traditionally taboo subjects like failed pregnancies.

But as I went through the experience, I wished there were more stories from women who have been there. There are some. But you know the old saying, if you're not part of the solution, you're part of the problem? I want to be part of the solution for those who go through an ectopic pregnancy in the future.

So for what it's worth, I'm going to share some lessons I learned during this hard process. 

1. You could be on edge for months.

I received the bad news that my pregnancy was not viable, that the little embryo was in the wrong place in early April. 

And then, before I could properly grieve, I was told that my own life was in danger.

My ectopic was confirmed when my pregnancy hormone level was borderline for chemical treatment — so there was a mad rush to get me the medication (methotrexate) in an effort to avoid the surgery that would be required if that number got much higher. The doctors on my team estimated that had I waited just 24 more hours, I would have needed surgery and possibly lost a tube, an ovary, or both. (As it turns out, my ectopic was not tubal — but at the time, that wasn't known. It was a rare ovarian ectopic.)

I went home after my first methotrexate injection and patiently waited for painful resolution. I wondered if I should take a day off work. I expected it might take a couple days.

But methotrexate and ectopics don't work that way.

In fact, I was instead warned that I was still at risk for a rupture (which is a medical emergency), subsequent massive internal bleeding, and an urgent need for surgery. And a week later, my pregnancy hormone had only gone up, requiring a second shot of methotrexate. Two more blood tests in the week that followed revealed that the second shot was doing its job.

But it can take weeks or even months for methotrexate to "do its job." Your doctor will typically order weekly blood tests to see how your hormone is decreasing.

You may just want to be told that you're out of the woods. You likely won't be told that. For all of April and May, I was told that a rupture could still happen at any time, all the way until my hormone level is negative.

2. There is such thing as a "little bit" pregnant.

No, you're not pregnant with a viable life.

But your body does accept the pregnancy as legitimate, and this can be incredibly hard. You may have many symptoms of pregnancy, which actually serve as a constant reminder that you both are and you aren't: There's an embryo, but it can't survive. In my case, my body even took the step of creating what's known as a pseudo sac — a little home for the embryo in the uterus left permanently vacant — due to the belief that we were good to go. (Pseudo sacs are a phenomenon that occur in 10-20% of all ectopic pregnancies.)

My husband pointed out that my body was doing all the right things to promote a healthy pregnancy. I'm grateful to him for saying this.

3. Some things are unexplainable.

I'm a kidney transplant recipient. And in my case, I had a deceased donor. This means that someone died, his kidneys were removed from his body and transported by helicopter many miles, and several hours later (because I received the second kidney), the organ was placed in my body and somehow made to function.

As mind-boggling as that is to me, it's even more unfathomable to my small mind how this can be done with a beating heart.

Yet when you have an ectopic pregnancy, a healthy embryo cannot be moved less than two inches to a place in your own body where it can grow and thrive properly.

This is tragic and senseless to me.

4. Your grief might be delayed.

It took me several weeks before I could grieve. I had to feel "out of the woods" and let the world spinning beneath my feet slow down. Grief finally came when I listened to the Mercy Me song "Even If."

I had prayed so hard in those early days that my ectopic was a misdiagnosis (see below). It wasn't. We often pray for healing. But even if it doesn't come, God is still in control of my life. That song brought it all front and center — my baby had wanted to live. I had wanted it to live. I had prayed for it to live.

It couldn't live. It didn't live. It's a life that we lost.

5. You may doubt your diagnosis. 

This is huge, and if you're reading this with a suspected diagnosis of ectopic pregnancy but have not yet had methotrexate or surgery, PLEASE read on.

A 2002 study found that roughly 40 percent of all ectopics are misdiagnosed. 

Let that sink in.

Forty percent.

In my case, I had certainty. My ectopic was not confirmed with just one ultrasound at an early date, which is really where the dangerous ambiguity lies. Rather, I had multiple ultrasounds after six weeks. Before the first methotrexate injection alone, I had three ultrasounds evaluated by three different doctors at three different facilities at six and a half weeks. (This was not entirely intentional.) Between my first and second methotrexate injections, I had another ultrasound at what would have been nearly eight weeks, evaluated by yet another doctor. I had a final ultrasound at nearly ten weeks — you guessed it, evaluated by yet another doctor. ALL ultrasounds revealed a uterus devoid of a gestational sac at a time when I should have had not only a gestational sac, but a yolk sac, fetal heartbeat, and fetal pole as well. Meanwhile, there was clearly a structure in my left ovary, and my hormone rise indicated pregnancy.

It's easy to feel pressured to rush into treatment when you're told you have an ectopic. After all, you'll be reminded over and over that you're in the middle of a potentially life-threatening medical emergency.

But get confirmation.

And then get it again.

And if you need more opinions, get more opinions.

Misdiagnosis is not a small issue here. There are support groups devoted to women who were misdiagnosed with ectopic pregnancies and given methotrexate. Many of them subsequently miscarried what would have been healthy uterine pregnancies. Methotrexate is a folate-depleting agent, and the period of 6-10 weeks is precisely when your baby needs folate to develop a healthy spine. Among women who are mistakenly given a methotrexate injection but later receive news of a confirmed uterine pregnancy, birth defects (if the baby survives) are common.

Doubts and denial are two different things. If you have doubts in the face of an ectopic pregnancy diagnosed at five weeks, get another opinion at six weeks. If you are in denial of a true ectopic pregnancy, though, please try to work through that denial before you find yourself in a life-threatening situation.

6. Others aren't likely to understand.

I came to dread what people would say when I shared my experience, but the important thing to remember is that people's hearts are generally in the right place.

While going through the ectopic and sharing with trusted friends, it was hard to hear people compare it to a miscarriage experience. I found the emotions associated with my ectopic to be very different than those associated with my earlier miscarriage. (I'm not saying either was better or worse. They were different.)

However, the more time and space separates me from the experience, the more I realize that in a lot of ways, pregnancy loss is pregnancy loss.

7. Life will go on.

If you're in the middle of this and feeling discouraged, rest assured that you will have physical resolution with time. Try not to feel guilty if the impact on your heart is delayed, and then take the time you need to find emotional resolution as well.