Rare Uterus Condition

Last updated on July 12th, 2023 at 05:02 pm

My Bicornuate uterus

You may be wondering, hmm, how random of a topic- But- when I was first diagnosed I could not find very many blogs or information pertaining to my diagnosis so I thought I would blog about my experience. 

So what is a Bicornuate uterus?

It’s a heart shaped uterus- how fun haha Basically it is a very rare genetic condition where only half of my uterus formed, appeared smaller in size and I only have a single fallopian tube instead of two. This can cause a multitude of things to occur such as preterm labor, stillbirth rate increase, breech positions and difficulty getting pregnant. 

While in the recovery room I was googling all of these things because I couldn’t understand why I was being asked a lot of questions and I was concerned. Thank the lord I did not know of this condition prior or have any negative experiences with my pregnancy because it is a lot to comprehend after being diagnosed. 

I was fortunate in my journey of conceiving and was able to conceive the first time we tried without intervention. A lot of cases require IVF. Most symptoms of a bicornuate uterus include painful periods, which I luckily never experienced either.

As I sit here writing this, I am currently 34 weeks pregnant with our second son. I am still trying to cope with the anxiety of my condition since I was diagnosed in 2021 after an emergency C-section. 

I discovered my condition after my 15 hour labor with my son. The OBGYN doctor that had followed me all throughout my pregnancy was on call the night I went in to labor. Unmedicated, I dilated to 10cm, it was time to push and my doctor noticed my son was sunny side up, had meconium which can be caused my fetal distress and said something just wasn’t appearing right. She first offered to vacuum him out, which I was not comfortable with so I elected the c-section. 

Within 30 minutes I was prepped and in the OR room. I was calm until they pulled my son out and I didn’t hear a cry at first. The nurse had told my husband not to look yet. Within a few minutes we heard his first cry and dad got to go over and meet him. My son had aspirated a lot of his meconium so the nurses had to shove a suction device down his throat. My husband saw a portion of that being done when he went over to meet him for the first time. 

While I was on the operating table my OB doctor said “Oh…you have a unicornuate uterus!” I was so zoned out at 5am I said back, “what! I have a unicorn uterus!?” She then proceeded to draw a picture and try to explain this very mystical-sounding name for a rare genetic condition. She said I may only have one kidney also. This was so much to process during my operation I was just in shock. 

In the recovery room I remember a few nurses approaching me and asking if I had any pain ever or difficulty getting pregnant. I was googling my condition in the recovery room trying to figure out what was going on with me.

Although I’ve never experienced menstrual pains, UTIs or anything along those lines, I’ve had some issues with chronic dislocations and flexibility. Before becoming pregnant, I was diagnosed with Ehlers-Danlos Syndrome and trochlear dysplasia in my knee. After many years of struggling in sports and many people thinking I was faking an injury, even after surgery, I finally had a knowledgeable doctor that knew why I had dislocations and that I wasn’t just “built like gumby”. I do however have both kidneys which some cases of unicornuate uteruses it can be common to only have one kidney.

When I was discharged from the hospital, I felt so blessed to be alive and have our beautiful son that was truly a miracle.

During those wee-early hours of breastfeeding, I stayed up and Googled the term “unicornuate uterus” and read the following in a case study: “The reproductive performance of women with unicornuate uterus is poor, with a live birth rate of only 29.2%, prematurity rate of 44%.” 

Verywell Family, the pregnancy resource site run by board-certified physicians wrote simply: “The odds of a full-term delivery of a healthy baby are roughly 50 percent.” 

No better odds than the flip of a coin.

I am so glad I did not know these statistics prior to becoming pregnant like I do now. The anxiety I have experienced with my second pregnancy has been unreal. I stay up most nights googling my odds still and reaching all sorts of blogs to help cope with my anxiety. 

Miscarriage and going into premature labor are significant risks. Blood flow to the uterus is a concern and there is the terrifying risk of stillbirth. I need constant monitoring to check on the growth of the baby to make sure the tiny space isn’t restricting the development. So far in my current pregnancy I have had 3 growth ultrasounds. Each time I feel so anxious. 

My current doctor has reassured me that since I delivered my first at almost 39 weeks that I should carry full term since my uterus has stretched and has hopefully made more room for him.  

I somehow thought this pregnancy would come with more confidence and less anxiety. But until I am holding this son, breathing in my arms, I know that nothing is guaranteed.

Since being diagnosed with this rare condition, I have spent a lot of time looking up other message boards, instagram tags and have find my outcome was very fortunate and rare. A lot of women have traumatic experiences and loss with this condition. 

I look at my son every day and I tell him how grateful I am that he is my son and how much I love being his mother. I will never stop being amazed at his existence. I tell him a story about a soul floating amongst the planets and hearing a mother down on earth asking for a baby. That soul chose the mommy, even though she didn’t have as much room in her belly as other mommies. He picked her anyway. The mommy told the soul to stay in her belly until he was healthy and ready to come out. And he did.

I am reminded how fragile and unpredictable it is to create life. I look at every human and I want to yell, “You are a miracle, you are a miracle, you are a miracle!” 

The flip of a coin.