A Missed Diagnosis Could Have Cost Me My Life

A Missed Diagnosis Could Have Cost Me My Life

October is Pregnancy and Infant Loss Awareness Month and today is Pregnancy and Infant Loss Remembrance Day. 1 in 4 women experience pregnancy loss and some women experience it multiple times. It’s so common, but it seems like there is some sort of stigma surrounding pregnancy loss that prevents women from talking about their experiences. What is it that makes us keep this to ourselves? Are we embarrassed? Are we ashamed? Is it too traumatic to talk about? I don’t have the answer to why women don’t talk about their experiences with pregnancy loss more and I’m sure the answer is different for every woman. For me, the answer is that I was traumatized and I got angry every time I told my story. Pregnancy loss is a very personal and sensitive subject but it’s so important to talk about it because women need to know that they’re not alone. It’s important to tell our stories because we never know who may be able to relate and we never know who we may inspire. So, I am 1 in 4 and I’m going to tell my story!

After I had Rhyan, I had an IUD placed because I didn’t want to worry about getting pregnant again for a LONG time! I’m talking like not ever! It was the non hormonal IUD because I had migraine issues with hormonal birth control in the past. The copper IUD, Paragard, is supposed to provide pregnancy protection for up to 10 years. However, as with all birth control, an IUD isn’t 100% effective. I know several women who have gotten pregnant with an IUD in place and went on to have a healthy, normal pregnancy. On the other hand, pregnancies that occur with an IUD in place are more likely to be ectopic, which means they occur outside of the uterus. Without proper treatment, an ectopic pregnancy, especially one that occurs in the Fallopian tube, can rupture and cause life threatening bleeding.

On January 1, 2019, I started what I thought was my period. Now, my body has always been very regular, and once I got my IUD placed my periods were always the same. They usually lasted about 5 days and cramps would go away by day 2. By January 10th, I was still having some bleeding and cramping. I started to get concerned because that was definitely abnormal for me, but I also knew that birth control could make your body do some weird things so I wasn’t to the point of panic just yet. I wanted to make a doctor’s appointment to get checked out just in case. The OB/GYN that I had been seeing since before I was pregnant with Rhyan had moved away and I hadn’t established care with a new doctor yet which made getting an appointment kind of tough. Doctors at the hospital where I worked and wanted to establish care, didn’t have appointments available until March. I tried to make an appointment with a doctor I had seen once in the past but she didn’t have any appointments until February. But, the schedulers asked me if I needed to be seen that day and I said yes so they were able to fit me in with someone else in the office.

I got to the doctor’s office, registered, gave my urine sample and waited almost an hour before I saw the doctor. She came in, we reviewed my symptoms and she gave me a list of all the things that could be causing this extra long, extra crampy period. It could because of the IUD or it could be an indication of endometriosis or maybe I was starting to have thyroid issues. Then she said “Could you be pregnant?” In my head, I said “Well I provided you with a urine sample for a pregnancy test, you tell me.” Out loud, I said “Well, I have the IUD so I wouldn’t think so. But I guess anything is possible.” She said “Well let me go look at your urine because if you’re pregnant, that changes the whole conversation.” Again, I provided the urine sample. Shouldn’t the results have been checked prior to the beginning of this conversation? Whatever. She left and came back to tell me “Your pregnancy test is negative, so we don’t have to worry about that.” But obviously, something was wrong. So she ordered some lab work and sent me on my way.

The next morning, I got a notification that my lab results were available on the online patient portal. I checked the results of my blood work and something told me to open the pregnancy test results, so I did. And right there, in big bold print, was the word POSITIVE. Then, I was at the point of panic. I was trying to rationalize and I started thinking that maybe they accidentally posted someone else’s lab results to my profile. That happens, right? I hauled ass to Walmart and got a 3-pack of pregnancy tests. I got back home and took all three. One by one, they all came back. Positive. Positive. Positive. By then, I was panicking while simultaneously being filled with rage at the thought of that doctor telling me that my pregnancy test was negative so we “don’t have to worry about that.” I called the doctor’s office to explain the situation and basically let them know that I needed to be seen again that day so this could be sorted out. They asked me to go to the lab first to get an HCG level drawn before going to the office.

The doctor that I had seen the day before wasn’t in the office (how convenient), so I saw a Nurse Practitioner. She apologized for what had happened and said it was because whoever read the test didn’t read it correctly and my results were really faint. Then she said “There could be several things going on. Your HCG level is only 38, which is VERY low. So, it could be that you’re having a miscarriage and this is the very end of it and your HCG level is still dropping. Or, it could be that you’re having an ectopic pregnancy where the HCG levels wouldn’t behave as expected.” I had a full blown meltdown and tears were falling down my face because I knew that the risk of an ectopic pregnancy was higher with an IUD in place.” They took my IUD out, sent me to get an ultrasound and told me to come back the next Monday to get another HCG level drawn to see if it would increase or decrease over the weekend. After the ultrasound was done, I was told that I could go home and that someone would call me with the results.

Not even an hour later, I was picking Rhyan up from school and my phone rang. It was the Nurse Practitioner I had seen earlier calling to tell me that I needed to go back to the hospital immediately. The ultrasound showed an ectopic pregnancy on the right side and I may need emergency surgery. I left Rhyan at school and called my mom to pick her up and then I called my boyfriend to tell him to meet me at the hospital. When we got to the emergency room, they started an IV on me, drew labs and then we were just waiting for someone to come and tell us what the plan was. Eventually, an OB/GYN came in to talk to us. But she gave us a very different story than we were expecting. Apparently, my ultrasound that “showed” an ectopic pregnancy wasn’t convincing enough to the OB/GYN team, so they weren’t comfortable doing surgery or giving me the medication that they normally would to treat an ectopic. Maybe it was ectopic, maybe it was a miscarriage, or maybe I was in the very very early stages of pregnancy, they weren’t sure. So for the second time that day, I was sent home with a plan to return the next Monday to get another HCG level drawn.

I went home and spent the weekend in shambles. I had absolutely no idea what was going on. Was I pregnant? Was I having a miscarriage? Was it an ectopic pregnancy? None of these were good options. I didn’t want to have another baby which is why I got the IUD in the first place. But if I was pregnant, obviously I wanted it to be a “healthy” pregnancy. I found out I was pregnant and found out something was wrong with my “baby” all in the same day. Did this even count as a pregnancy? Did this count as a loss? Would people judge me for being said because I wasn’t “really” pregnant? There were so many thoughts running through my head. And I couldn’t fully process it because I didn’t even know what *it* was.

I went back that Monday to get another HCG level drawn and that one was pretty inconclusive as well. The level didn’t rise the way it should in a “normal” pregnancy. All that told us was that *something* was wrong but we still didn’t know what that something was. I was told that I should make a follow up appointment with the doctor on Wednesday to discuss options and get another level drawn. But I had already made up my mind that there was no way in hell I was going back to the doctor who told me I wasn’t pregnant. Because I had a positive pregnancy test, I was now considered a new obstetrical patient which made it a LOT easier to get an appointment. I was able to get an appointment with a different doctor at a different hospital two days later.

At that appointment, my pregnancy test was actually negative (I requested to see the results myself). By then, I had stopped bleeding and cramping so the doctor determined that it was likely a miscarriage and that it was finally over. I was to get blood work done every couple of days until my HCG level was low enough that I could be started on birth control again. After getting labs drawn several times, my HCG level WOULD. NOT. DROP. My doctor decided to do another ultrasound but wasn’t able to find anything. He told me that he was concerned because my HCG level wasn’t dropping the way it should and nothing was visible on ultrasound but there was clearly something wrong. He recommended that I have exploratory surgery THE NEXT MORNING! Talk about a whirlwind.

So finally, on February 7, after over a month of confusion, the mystery was solved. It was an ectopic pregnancy after all. It was in the left Fallopian tube, not the right like I was originally told. Thinking back on it now, I remember being woken up out of my sleep one night with such an intense pain on the left side of my abdomen. It didn’t last very long so I didn’t think much of it, especially because in the beginning I was told that the issue was on the right side. But that intense pain that I was felt in the middle of the night was because my Fallopian tube had opened a little and blood was leaking into my abdomen. My Fallopian tube was damaged and had to be tied off. It was a very quick surgery, I recovered and went home the same day. That was it. I had my answer. But I still didn’t know how to feel. I still didn’t know how to process it. I felt like everything happened so quickly and so slowly all at the same time. But it was finally over and I was left with “where do I go from here?”

I felt like I didn’t get the opportunity to grieve the way I really needed to. Life went on as normal. I still had to be a mom and take care of my child. I was hiding my emotions from her because I didn’t want her to see how upset I was. I still had to go to work and handle business there. From the outside looking in, you never would have known what I had been dealing with for the past month. But that’s usually how it is for women. We don’t get the time to stop and process and grieve. The world is still moving around us. There is still work to be done, people to be taken care of, groceries to be made, meals to be cooked, and all the other things we do as women and mothers. We don’t get a break.

But we deserve the space to be able to process our emotions. We deserve the opportunity to cry and scream and punch a pillow if we need to. We deserve the space to tell our stories because we deserve to heal. And we can’t heal if we keep all of our pain bottled up inside. Even though we handled and processed this situation in completely different ways, I’m so thankful that my boyfriend gave me the space to cry and sulk when I needed to. Eventually, I was able to move on. I got to the point where I wasn’t sad every time I thought about it. I still get chills when I think about the fact that I literally felt my tube open up. I still think about how much worse it could have been and how blessed I am that it didn’t rupture completely because it’s very likely that I wouldn’t have made it to the hospital in time with my daughter in the middle of the night. But I am *still* not to the point where I don’t get just a little angry when I think about how everything transpired in the beginning.

I’m here to tell you that it’s okay to feel whatever emotion you feel when this happens. You get to be angry, sad, depressed, confused, hurt and lost. But you should NOT feel ashamed, embarrassed or guilty. The bottom line is pregnancy loss is not something to be ashamed of, it’s not something to be embarrassed about, it’s not something to blame yourself for. We should feel empowered to talk about it. Look how common it is. 1 in 4 women experience this. 1 in 4. You never know who you may help or inspire by sharing your journey!

Blessings.

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