i’m a unicorn?
After leaving the HSG appointment and having to book a follow-up to receive the results, we finally went back about a week later to hear what the doctor said. When we sat down, the doctor said there were two things responsible for the difficulty I was having to conceive.
“Your blood results show that you have Polycystic Ovary Syndrome.” PCOS for short. PCOS is a common hormone disorder that affects people with ovaries, usually during their reproductive years. It can cause irregular periods, high levels of testosterone, and cysts on the ovaries. PCOS can also lead to symptoms like acne, weight gain and difficulty getting pregnant due to lack of ovulation. Because of the hormone imbalance, the ovaries may not release an egg regularly (or at all), which is called anovulation. Without ovulation, there’s no period or the periods become irregular, making it harder to conceive naturally.
I felt like I was hit by a freight train. The cyst that ruptured when I was 13. The constant issues with hormonal acne. The irregular periods. Ovulation strips not working. There were so many signs.
The doctor kept talking and said that getting me ovulating would actually be a pretty simple fix – they can prescribe Clomid or Letrozole – medications that stimulate ovulation. Letrozole is typically preferred for patients with PCOS. Okay. I had so many questions, but before I could dive in, he cut me off.
“Mrs. Ahrens, the other result we need to discuss is your HSG.” Oh. Right. He did say there were two things.
“You have what is called a unicornuate uterus.” I’m a unicorn? Ha. Surely I didn’t hear that correctly. I sat silently, my husband and I not looking at each other, my hands in my lap, as the doctor went on to explain.
A unicornuate uterus is a rare type of uterus that forms when only one side of the uterus develops properly. Instead of the usual pear shape with two sides (horns), it ends up looking more like a half-uterus — smaller and with just one functioning side.
It can sometimes affect fertility or pregnancy, depending on how much of the uterus is developed and whether the other side formed a small, non-working “remnant.” It affects about 1 in 500 to 1 in 1,000 women — so roughly 0.1% to 0.2% of the general female population. It is considered one of the rarest uterine anomalies.
I think he spoke for at least another 10 minutes describing what he saw in my HSG – my uterus looks like a banana with no other side/remnant at all. He’s never seen anything like it… I lost track with all the roaring in my ears. When I finally was able to refocus again, he ended it with saying that he does not have the expertise to work with me so he would need to refer me to a different office, specifically, the Colorado Center for Reproductive Medicine (CCRM). With that, he handed me a folder with all of my results and a CD of my HSG images and sent me on my way.
Unlike the feeling I had after the HSG appointment where I lost myself in tears, I felt a heaviness in my chest – one that I didn’t realize would stay with me for years. However, as an educated journalist, I did the first thing I could think of and started researching everything I could about unicornuate uteruses. Unfortunately, given the small percentage of women this affects, the research is limited. So instead, I called CCRM and made our consultation appointment – which of course would not be for another two months – and waited patiently while I tried to keep everything under control.
Two months later and the appointment was finally here. After filling out a host of paperwork before we even arrived, we sat down with the doctor and talked in more detail about the results and what our next steps could look like. One thing they wanted to confirm was if I had both fallopian tubes, ovaries and even kidneys because often with a unicornuate uterus, you will only be developed on one side. We learned that I only have the left side of my uterus and left fallopian tube. I don’t have the right side, but I do have both ovaries and both my kidneys. The doctor then went on to explain in great detail about the risks and complications of my unicornuate uterus.
Miscarriage Rate: The risk of miscarriage is higher in people with a unicornuate uterus, with studies suggesting a 40-50% chance of miscarriage in the first trimester.
Ectopic Pregnancy: There’s a higher risk of ectopic pregnancy and if there is a complication, I only have one tube which I could lose.
Preterm Labor: The condition can increase the likelihood of preterm labor (before 37 weeks), with a 30-50% chance of preterm delivery, which is higher if there is no remnant side.
Fetal Position: There may also be an increased chance of abnormal fetal position (like breech or transverse), which can complicate delivery.
In my naïveté, I thought getting pregnant would be the hurdle, not staying pregnant. After walking us through all of the details of what our next steps would be, he sent us home to talk and decide what we wanted to do. We would have at least a month because they needed to give me Progestin to induce my period so we could have a new cycle before anything else could happen.
I was terrified. I walked out of that room not knowing if I did want to move forward. Was I willing to put my body through the hell he said would come from the various drugs, let alone dozens of appointments I would need to rearrange my entire schedule for? Was I willing to give up the things I enjoyed doing like hot yoga because that would be too risky for me? Was I willing to endure weeks of bed rest that he said would be highly likely if I made it past the first trimester? Would I be willing to raise a baby with complications from a preterm delivery? What if I went through all this and still didn’t get pregnant? Was I a monster for thinking these things? And then for the first time, it truly hit me. I had no one to talk to about this. No one that understood what I was potentially facing. Everyone in my life at that point either hadn’t been trying for kids yet, or the ones that did, were able to get pregnant and have happy and healthy babies.
My ex-husband thought it was an easy decision – of course we would try. If we have a chance, was it unfair of me to take that possibility off the table? And so over the course of the next two months I warred internally. We told our families. I finished my master’s degree. We attended weddings. Then we decided to move foward and I got my first round of ultrasounds, bloodwork, and medication – and life was never the same again.
Honestly,
Theresa