In late 2017 I found out that I have a Unicornuate Uterus. This discovery completely changed my world. It impacted my fertility journey greatly, and also took a toll on my mental health. Nothing changed, yet everything changed. Knowledge is power, and the more you know about something the more power you have over your situation. Sometimes though, that empowering knowledge may be unwelcome, and can completely shake your world. That was definitely the situation for me. Everything I knew to be true was actually incorrect and that took some time to come to terms with. I had to figure out how to live and more forward after my diagnosis. Isn’t always easy, but one thing that greatly helps me is other wonderful ladies who also live with the same condition.

Diagnosis Of A Unicorn

When Rob and I first approached my general practitioner (GP) about ovulation tracking, he suggested we have a handful of baseline tests to make sure everything was as it should be. Those tests included an internal ultrasound for me and blood tests for both of us. I expected these tests to come back proving that everything was in order, and that we were just impatient. At the ultrasound the technician said that I everything was in order. Imagine my shock when the GP said it wasn’t.

After a misdiagnosis and emotionally scarring confrontation with that doctor (click here to read all about that), we got the coveted referral to our fertility specialist (FS). After reviewing all of our test results, she retracted the GP’s ignorant diagnosis of PCOS and seemingly believed that everything was fine. But just to make sure, she ordered a HyCoSy. The HyCoSy should have simply confirmed that everything was hunky dory, and clear out any potential blockages in my fallopian tubes. What it uncovered was what felt like a death sentence. The HyCoSy, identified that I have a unicornuate uterus.

What Is A Unicorn(uate) Uterus?

A Unicornuate Uterus is the name for half a uterus. Women are born with the condition, and to put it simply, half of the uterus in question just did not complete development. Typically the uterus starts as two seperate horns that fuse together during fetal development. Eventually the fused walls (septum) are reabsorbed and forms one uterine cavity. Occasionally the septum doesn’t completely disappear and you get a bicornuate uterus. On very rare occasions, one of the horns will not develop fully, hence a unicornuate uterus

There are different types of unicornuate uteruses, for a full list as well as more information on the condition, click here (page 2). My unicornuate uterus is specifically a unicornuate uterus with a rudimentary right horn, or a non communicating horn. In my situation, my right uterus got lazy and only partially developed. It completely neglected to connect itself to my right fallopian tube, making itself completely useless and a waste of space.

What Does It Mean To Be A Unicorn?

Well if you’re in my boat and have a rudimentary horn, it means that every time you ovulate from the disconnected ovary, there is no way you could get pregnant. Without ovulation tracking, it is impossible to truly know which ovary an ovum is coming from. So straight up, this meant that our best foot forward was a form of assisted conception.

Unfortunately, there are many more issues that can impact a woman’s ability to have a baby when she has a unicornuate uterus. The doctor who performed my HyCoSy and diagnosed my condition told me that my uterus didn’t mean I couldn’t get pregnant, but that it may make carrying a pregnancy to term difficult.

Typically a unicornuate uterus increases the chance of miscarriage, preterm labour, small babies and malpresentation as a result of the size and capacity of the uterus. There are other issues that are more likely to present during a pregnancy of a woman with a unicornuate uterus, click here to read more about them. Unfortunately there is no way to know if any of these will be the case until they are. As you can imagine, this was quite overwhelming information.

The Emotional Impact of Being A Unicorn.

Betrayal.

Finding out I have a unicornuate uterus, that I’ve always had a unicornuate uterus, and the subsequent diagnosis of endometriosis really messed me up. It was like finding out that Santa Claus isn’t real. My parents lied to me, and pretty much every other person who knew the truth. This lie isn’t told once, rather it is consistently repeated, propagated and guarded. Once you find out the truth about Santa Claus, you must maintain the lie to all who still believe it. That’s pretty much what my diagnosis felt like.

Lack Of Awareness

I never learnt about uterine abnormalities at school. The first time I found out that uterine abnormalities exist was through YouTube. I was watching family bloggers; Daily Bumps and it was there that I learnt some women have bicornuate uteruses. The Lanning family did a great job of spreading awareness of this condition. Missy took the audience along with her when she had the septum removed. Other than that exposure, I didn’t know other conditions like mine existed.

Women have a uterus. It is part of being a female. Our ability to create life in that uterus is the main physical difference between us and men. This is a scientific fact. Despite what society suggests, that is the difference between a male and a female. Our unique DNA decides what our bodies are capable of. My DNA, which is female, failed me. Finding out that I had only half of this life giving organ made me feel like less of a woman. It made me doubt what I knew to be true.

Identity Crisis.

That had a minor impact compared to the realisation that I may never be able to fulfil my life long dream of becoming a mother. All I have ever wanted in life is to become a mother. It was what I consider will make me a successful human being: raising children. When I received my diagnosis, that dream came crash down around me. The chance of being able to be a mother just became smaller. It suddenly felt like something I had no control over.

It was a harsh pill to swallow, and it has had an impact on my life and relationships since. I wrote about that the other week, click here to read that post. I have had to reassess how I value my contribution to the world because I may never had a biological child. At this point, I don’t quite yet know what that is. I feel that part of that is helping others in my situation.

Depression.

Finding out about my unicornuate uterus triggered an episode of depression. I became very distrusting of those around me, believing no one could understand what I was going through. So many people around me had been dismissive of my struggles to conceive, and now that I had a reason for it, I did not feel that they deserved to know much about it. At the same time, I needed to talk about it. Not talking about it, made me isolated. I pulled back from those closest to me and spent a great deal of time in my own company.

My thoughts became obsessive. All I could think about was how much of a failure I was. I was a failure as a wife, unable to give my husband a child. Not to mention the failure associated with my sex. Women carry babies, except me. I don’t carry babies because my body isn’t truly woman. When medical knowledge could not explain the reason my body failed me, I fell back onto my favourite reason for misfortune: I am a bad person.

It has been rough. It’s taken a combination of medication and a lot of therapy to get me to a point where I no longer blame myself for this misfortune. In fact, I don’t even think of it as a misfortune so much anymore. It is just part of who I am. One day science will catch up to my condition and be able to tell me why it happened. There may even be a day where my uterus could be regrown. Perhaps uterine transplants will become a thing. Until then, I have had to learn how to live with my condition, and manage the emotional rollercoaster that comes with it.

Connecting With The Heard.

I know that connecting with other women who also have a unicornuate uterus like myself has helped me a lot. There is something greatly comforting about knowing you are not alone. It is human nature to seek out acceptance from a group, something that is harder to do when you perceive yourself to be different. When someone else is like you, it provides the comfort and that acceptance that we all crave. We may not have answers for each other, but we have each other. Women who have probably felt the exact same feelings at some point or another. Seeing how they have progressed emotionally from their initial diagnosis gives hope.

It is like talking to a coworker about work. When you’ve had a really rough go of it at work. Maybe you’re a cinema employee and you’ve just survived the midnight screening of the new Harry Potter movie. Afterwards you may be exhausted, tired, and full of stories that you just have to bitch about. Odds are, you’re going to bitch to those working with you on that shift.

You can commiserate on how ridiculously angry customers got when the Frozen Coke machines shut down mid-service. Chances are you got an earful about the prices from a disgruntled customer, much like your fellow employee did. You will all debrief together and when you vent to someone who doesn’t work at the cinema with you, they just don’t get it. It feels good and somewhat cathartic to talk about your experience with others who shared it. That’s how it feels to talk to someone who also has a unicornuate uterus.

This post isn’t just for my fellow unicorns, but it is for everyone. It is to help you understand our unique condition and to maybe better understand why we are struggling. I encourage you to ask questions. Don’t be dismissive of our reality. You don’t need to have an answer, simply listen and acknowledge us.