One thing I’m really keen to do with this blog as it grows is to share other people’s stories, like ours, that aren’t 2.4 straightforward when it comes to having a family. Monologues from other uteruses, if you will. (Or indeed any reproductive organs – all genders welcome). This post is by Sarah, who I met recently, and for many reasons she is a real Wonder Woman. This is her story of finding out she has a ‘unicornuate uterus’. I’ll let her do the talking from here…
Hanging over the door in my kitchen is an apron with a number of badges on it. Name badges from hen do’s, the national trust and various charity badges given to me over the years when I’ve donated to a worthy cause. One of these badges is the familiar triangle of a uterus with two fallopian tubes coming out the top right and left hand corners, spreading out sideways to meet two egg-shaped ovaries. The uterus has a smiling face on it.
When I came into possession of the badge there was nothing significant about it and it became just another item to adorn my already cluttered apron. But now when I catch a glimpse of it I get a jarring feeling.
Because if you cut me open you wouldn’t see a fleshy pink triangle smiling back at you.
In May 2017 I was diagnosed with a ‘unicornuate uterus’. It was explained to me that when baby girls are developing as foetuses their uterus forms in two halves which join together to form the final whole uterus. In my case, only my left side developed fully. My right side remained but as a ‘rudimentary horn’ (or, as I prefer to say, ‘nubbin’).
The diagnosis came as something of a surprise to me. I’d had a number of internal ultra sounds in the past. Before each one I’ve told them about my family history – my maternal grandmother had a ‘split uterus’ (or bicornuate uterus). At each of my previous scans I’ve been told ‘no, your uterus is fine’. So to find out about a uterine abnormality which I’ve had from birth, when I was expecting to be told I had endometriosis, took the wind out of me. I left the ultrasound clinic and called my husband to tell him the news which I managed to relay between sobs. He reassured me – ‘at least they didn’t say you can’t have children’.
Receiving the written report felt like another blow. Phrases like ‘risk of rupture and serious maternal morbidity’ ran alongside ‘congenital uterine abnormality’, ‘uterine fibroid’, ‘polycystic ovaries’. My husband kept trying to look on the bright side. ‘At lease we found out before we wanted to get pregnant’. ‘At least you didn’t get pregnant and it rupture’. ‘It’s better to know’.
Discussing it with friends I would take a light hearted approach – laughing off any concerns, acting casual about my worries on whether it will impact on my chance of having children. ‘Hey, my remaining uterus is called a unicorn. That’s pretty cool’. ‘I wish I had a unicorn’ one friend offered. No. You don’t.
From this point on our life plans all changed direction. Having been part of the crowd casually saying ‘yeah we probably want children, but not yet’, and happily enjoying the sense that we’d be young and fertile forever, the sense of the ‘clock ticking’ and what it might actually mean if we couldn’t get (or stay) pregnant began to bubble to the surface.
A side-effect of a unicornuate uterus is miscarriage, in particular later in the pregnancy as the remaining half tries to stretch to accommodate the baby. All those times I casually brushed off wanting children, telling people ‘I wasn’t sure’ I now realised was a way to save face, to not look too desperate for them, in case one day I couldn’t have them. And suddenly that possibility felt ever closer. For the first time I realised I truly did want them.
Within weeks of my diagnosis I was coming off the pill, taking HRT and having more tests to determine if my nubbin had any lining in it. If it did, this would mean a pregnancy in that side was possible, but with no way out of the nubbin the pregnancy would rupture if it did not terminate itself.
Several tests and ultrasounds later, we got some good news when the doctors determined that the nubbin had no endometrium and so removing it was not a priority. I could have it removed if it was causing me discomfort (the reason for my initial visit to the gynaecologist on this occasion was pain). But as any surgery carries risks, at that stage I chose not to proceed.
The months went on and the pain didn’t get any better. I kept telling myself I could cope with it and it wasn’t that bad. It was only crippling once a month. That’s not so hard to deal with. The rest of the time I was in low levels of pain. But who isn’t once they get over 30?
In truth, I was putting off making the decision to have my nubbin and fallopian tube removed as I didn’t want to have to make a decision about having the operation. Because I didn’t want to have only half a uterus in the first place. Because I wanted a whole, squishy, smiley uterus and two functioning fallopian tubes. It didn’t seem fair. I wanted to be normal.
The pain eventually became too much and I booked in to have my nubbin and right fallopian tube removed in July. I’m now recovering well and the wounds from the laparoscopy are healing up nicely. I’ll see the surgeon at the end of the month. It remains to be seen if the operation cured my pain.
Most days I try not to think about my incomplete uterus and one remaining fallopian tube as it makes me sad to dwell on what is not there. To dwell on how I am not a whole woman. However it can be hard not to think about it, particularly when every greeting cards shop in the city is seemingly stacked floor to ceiling with unicorn mugs, unicorn balloons, unicorn toys. As I hand over my cash my arm brushes against a unicorn pen. They really are everywhere.
Whilst I was off work recovery from the operation, people asked me if I was having a nice time, enjoying myself, watching lots of box sets. ‘I’d rather have a whole uterus and two fallopian tubes’, I’d respond.
At least I’ll never get asked to be a Handmaid. Silver linings.
- If you’d like to share your story for a future guest post, you can contact me here