Guest Writer Wednesday: Rachel's Unicornuate Uterus Story

Guest writer, Rachel, shares her unicornuate uterus story. She wants to inspire and provide hope to other women with unicornuate uteruses (UU). She writes that the diagnosis of a UU “isn’t all doom and gloom.” I know you’ll find Rachel’s story uplifting!


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Clouds Often Have Silver Linings



My unicornuate uterus diagnosis story has been one that has made me feel anxious, apprehensive, and afraid, but it has also made me feel special, lucky, and blessed.

My first stroke of luck was one that I didn’t realise at the time but would realise afterwards: my diagnosis.

My symptoms started for me when I came into adolescence and started to get my periods. They were heavy, painful and I would pass big “clots.” Of course feeling unsure about whether it was normal or not, I went to my first advisory, my mother. After heartfelt discussions with her and sharing similar symptoms and knowing our family history we felt that maybe endometriosis was the cause of my period issues.

Unfortunately for me as I got older, the symptoms got worse and the pain I would get started to occur throughout my cycle. The pain was worsening to the point of having to double over and it being breath taking. At this point I knew I had to do some further investigations.

I went to my life long GP who I always saw and trusted. She investigated with internals and ultrasounds and found nothing out of the ordinary. The next step was to refer me to see a specialist.

The consultation was easy. She did a abdominal and internal exam, and we went over my GP’s scan results and spoke at length about my symptoms. The specialist felt from my symptoms, scan results, and family history that the cause was probably endometriosis as we guessed but to find out for sure and determine the severity, it was best to book in a laparoscopy and possibly excise the issue at the same time.

The wait to have my laparoscopy was an anxious one. I wondered what would be found and how it would affect me in the future. Eventually the day came. I had fasted, done all my preparations, waited to be admitted, and ultimately to be taken into surgery. When I woke up, I was tender but more concerned about the findings. Eventually my specialist visited me and turned my world upside down.

She broke the news to me that in fact I didn’t have endometriosis at all, although I did have a rare uterine abnormality, a unicornuate uterus. I was in shock. I had never heard of such an abnormality. The specialist would go on to draw diagrams and explain my condition and its future implications to me.

My unicornuate uterus was combined with a left rudimentary uterine horn, which the specialist excised while in surgery but left my healthy ovary and fallopian tube intact. I also had a tilted uterus. She explained my uterus was a different size and shape and that I had an increased risk of ectopic pregnancy, miscarriage, preterm labor and, due to the extra risk of uterine rupture, I would require Caesarian sections to birth any children I would carry. She also explained that she wasn’t sure what chances I had of conceiving naturally and unsure of how my uterus would go carrying the pregnancy.

My heart sank at that last part. I knew I wanted children in the future, of that I was certain. Over the next few months, I researched about my newfound diagnosis, but no information could give me the reassurances I was seeking about conceiving children of my own. I would have to wait and see what the future held. I comforted myself with the knowledge there were options like IVF and adoption.

Three years later I fell in love with my husband, an amazing supportive loving human who was fantastic with children. One of the hardest conversations we had was the one about my unicornuate uterus. He understood and all he said was we would work it out together.

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In 2014 we decided it was time for us to start trying to conceive. We knew it might take a while so we just decided to stop preventing it and see how we went. To our surprise within a month we were pregnant.

I was thrilled but understandably anxious about something going wrong. We monitored and watched as our little miracle grew. At 29 weeks I was diagnosed with Gestational Diabetes, which I was able to control with diet, although it was another stress on an already complex pregnancy. In 2015 at 38+3 we had our little girl via Caesarian section. It was the happiest day of our lives.

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Three years later we decided we would like to add to our family so we decided to try to conceive again. 10 months later we were thrilled to find I was pregnant again.

At 12 weeks I was again diagnosed with Gestational Diabetes and have been able to control with diet. I am currently 28 weeks pregnant with a little boy and we are planning another Caesarian section. The fear of something going wrong lingers but with each small kick, ultrasound and week that passes, a little relief sets in and each milestone I am truly grateful for as I realise how lucky I am.

I hope my story gives someone hope that anything is possible, and the diagnosis of unicornuate uterus isn’t all doom and gloom. We are special and our bodies, even though not “normal,” can produce us the miracle of life. Our uterus which all umbrella under the same term are not alike each being slightly different sized and shaped and needed to be treated as such. Wishing you all the very best for your own journey and welcome to the amazing group of the rarest uterine abnormality we have.

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About Rachel

Hi, my name is Rachel. I’m 33 years old. I live in South Australia, Australia. I’m married to my amazing husband Tom. I’m currently doing the best job in the world being a stay at home mum to a wonderful nearly 4 year old girl, and I’m 28 weeks pregnant with a little boy. I choose to look at my abnormality as a rarity and one of the things about me that make me who I am. I’m grateful and proud to be part of the unicorn community.