Miscarriages. One out of four women experience them. They’re common. So why are they rarely talked about?
I told my husband it would take us at least a few months to get pregnant. I had been on birth control for most of my adult life and had struggled with an eating disorder during my teenage years. Being in my mid 30’s, I didn’t know how long it would take to get pregnant. Boy, was I wrong. We got pregnant right away. I was like most women who obsessively take a handful of pregnancy tests because, you know, you can’t be too sure. One night, my husband graciously drove me to CVS so I could get another one, and plus, I had a coupon! Not surprisingly, that one also showed a positive.
I felt good for the next eight weeks. I experienced some acid reflux, so I started carrying around Tums, but that was about it. After a positive pregnancy test, I scheduled my first OB appointment on my 36th birthday in August of 2019. Looking back, it wasn’t the smartest thing to do, but I had taken my birthday off (who wants to work on their birthday?) and it would be eight weeks since the positive test. Leading up to my first OB appointment, I was somewhere between excited, shocked and completely nervous for this life changing event.
The OB we saw, Dr. Deka at Paradise Valley OBGYN, came highly recommended so I was eager to meet her and hear a heartbeat. From what came next, I have to hand it to my OB on how she just met me and then had to share some devastating news: “There’s no heartbeat and the fetus seems very small.” I remember laying there, in shock, with my husband’s hand pressing on my shoulder. I couldn’t believe what she was saying. I had no pain and I didn’t feel sick.
She laid it out that I may be earlier than eight weeks and that in very rare cases, there can eventually be growth and thus, a heartbeat. However, she thought it was a missed miscarriage. We scheduled to come back in four days. If you’re wondering how the rest of my birthday went, well, it sucked. I didn’t know whether to grieve or to have hope. And those four days were the longest of my life. The ultrasound tech confirmed what the OB said at the first appointment—that there was no heartbeat nor growth.
Now, here is where the story gets super complicated, so stay with me. Over the next several months, I will have undergone three Dilation and curettage (D&C) surgeries (two unsuccessful) and taken mistoprotol pills (also unsuccessful) before being referred to a gynecological oncologist (that’s where things got downright scary). After the second D&C, I was diagnosed with a cornual pregnancy, where implantation occurs in the upper cavity of the uterus; treatment protocol was similar to an ectopic pregnancy. I also got a methotrexate shot. In the butt, no less. I had to sign a waiver making sure I understood that I could have side effects ranging from nothing to having to go to the ER. The shot worked, and thankfully, I had no side effects.
Every week for the next two months, I had my HCG checked, and it slowly went down. Things seemed to be on the right track. Not exactly. By November of 2019, my HCG started going up by just a little, and an ultrasound showed some type of mass. This is where the gynecological oncologist comes in. I was referred to her after another specialist felt this needed to be taken care of as there were possible leftover remnants from the pregnancy in my uterus, and GYN oncologists tend to see the most unusual cases. This was almost four months after being told I’m having a miscarriage, and it’s still not over. And I was seeing a doctor that specializes in cancer. It was difficult not to let my head go to dark places. Thankfully, my husband helped to keep me sane (well, as best he could, given the circumstances).
By this point, I was trying to live my life normally. Well, as normal as you can while you’re seeing doctors weekly and feel this is a never-ending process. When I had down time, the grief would hit me and I’d be a mess. I can’t tell you how many times my husband saw me ugly cry. However, we finally got some good news: The GYN oncologist was able to remove the mass, hence the third D&C. I woke up from that surgery crying the happiest tears possible. Still an ugly cry, for sure.
The story doesn’t end here though. While the good news was that my HCG was below one, an imaging procedure to make sure my uterus was clear to start trying again showed something. Why another imaging when my HCG was below one, you ask? My OB said, “I don’t trust your uterus.” Fair and a completely understandable statement. The imaging left me feeling confused and defeated as I thought we were done with the miscarriage and in the clear. It also was extremely uncomfortable.
At this point we were six months after the diagnosis of a miscarriage. Thankfully my OB was not terribly concerned and recommended I wait a few cycles and to have another ultrasound before we could start trying. However, I was still in limbo and had been dealing with this since August. Plus, every time I thought we were moving forward, it felt as though we hit another road block. It sucked, it was painful, and there were moments when it literally hurt to think about it. To say that this had been a traumatic experience is an understatement. I had gone through feeling immense sadness to sometimes feeling disconnected and numb. All of this is normal when it comes to experiencing a miscarriage.
It seems when you’re going through all of this, everyone and their sister is getting pregnant or having babies. I get it, it’s natural. I started taking a class at my gym and the instructor was pregnant with twins. She also liked to talk about her pregnancy before, during and after class. While this is incredibly normal, I felt like I was dying inside and I wanted to scream. Sure, I could have said something to her but wouldn’t that have made her feel awkward?
But this is what happens. You have to live your life, and depending on who you’re around, act as if everything is hunky dory. Plus, you don’t know how much to talk about it with other people in fear of making them uncomfortable. Especially when you’re asked by strangers if you have kids or are planning to. I can’t even tell you how many times I’ve shrugged or said something to turn the conversation. Also, who wants to hear about your uterus all of the time?
And when people who do know what’s happening ask how you’re doing, it’s incredibly hard not to answer without giving the entire story, which is probably way too much detail and long winded. But this is my story and unfortunately, it is long and has taken many twists and turns. And when you’re still in the process, it is emotionally challenging to have the energy to talk about it without getting tearful.
So, this is what I suggest: Talk about your experience. Don’t be afraid to share your story. Even if it’s gross and it’s TMI and it makes you feel weird. You’re humanizing such a horrible and unfortunately common experience. And if you feel as though you can’t attend an event because it’s too painful, don’t! Honor your feelings and acknowledge what is going to feel good and what isn’t. Also, allow yourself to cry. Anytime, anywhere. There’s s such a cathartic release from having a good, ole cry. Find others who have gone through this or are going through it and talk about it. Talk about it as much as you feel you need to. This isn’t something we need to feel ashamed or embarrassed about. Miscarriages happen. We need to start having more conversations about them.
I am the one in four.
“I want to emphasize that Nicole’s miscarriage experience is very medically unusual and not routine for Women’s Health Arizona patients, or for patients in general. All miscarriages are disappointing and hard to deal with for patients and providers, but the vast majority are resolved within a few weeks. We at Women’s Health Arizona greatly appreciate Nicole sharing her difficult story publicly.”Monte Swarup, MD
Click here to read Nicole’s Story: My Rainbow Baby (Part 2/2).