Double trouble

As a teen, I discovered something rather weird and wonderful about myself. I have a condition called Uterus Didelphys. It is a rare congenital condition and simply put, it means I was born with two uteruses or a double uterus. I also have two cervixes and before two subsequent major gynaecological operations, two vaginal cavities also. Yeah, I know - weird, right? Women can have a variety of these ’uterine malformations,’ as they are referred to medically. Some people have a bicornuate (heart-shaped) uterus or a septate (divided) uterus with just the one cervix but, in my case, I had the whole shabang: uterus, cervix and vagina. Double trouble! It’s estimated that only 1 in 3,000 women have this form of the condition.

A small number of women with the condition have sold stories in the press and one lady even went on ‘This Morning’ where they sensationalised her story as ‘Woman with two vaginas!’ and the media response discussed it predominantly from a sexual point of view. This is not actually helpful or accurate. What I had was a rather thick, fleshy septum which ran down the centre of my vagina, dividing it in two. This also fused with my two cervixes which meant that when the septum was surgically removed, I was unfortunately left with a lot of internal scarring. But the procedures were absolutely necessary for me in the long run. Thankfully, it’s never really affected me since, in terms of periods (although tampons never quite sit right) or enjoying my sex life. 

It did, however, present an obstacle in the way of having children easily. As a teen, the consultant gynaecologist I met with for my treatment and surgery was rather unhelpful in that he deemed the topic of whether I could have children or not ‘irrelevant’ at the time. Surely, it’s always relevant for a young person to fully understand their medical condition and be prepared both physically and mentally for any challenges they may face in the future, as a result. Regardless of my age or relationship status. I wasn’t assertive enough at the time to push for more information. 

I remember after one of the many tests I had, in preparation for surgery, a young medical student excitedly took me aside to ask lots of questions about my condition, said it was ‘amazing’ and immediately proposed that she would like to write her dissertation about me as her sole case study. I politely declined and wondered if she’d be so excited if it was her own body, facing multiple procedures, scans and unknown difficulties ahead.

Despite this, when I first discovered I was pregnant, I entered the process as prepared as I possibly could be for things to fail, anticipating an early miscarriage or complication. I took those early weeks day by day, wary of the fact that circumstances could change at any moment. I think most people do, to be fair. I had so many concerns and failed to understand how, having a successful embryo in just one side of my uterus, I would be able to maintain the pregnancy in what must have been a more limited space than usual. I worried about whether the baby would be able to grow to full-term without any complications or abnormalities. If I googled the possibilities for too long, it got scary so I stopped. I had so many questions and received so few answers. 

As much as I came across a whole host of wonderful mid-wives, nurses, ultra-sound technicians and doctors along the way, none of them were ever really familiar with Uterus Didelphys. One of the mid-wives at my local health clinic, who started our initial meeting by describing her twenty-odd years experience in midwifery, had never even heard of the condition and I had to literally spell it out for her so she could google it, right there in front of me. I’ve had a GP receptionist visibly screw her face up in disgust when I was forced to elaborate on why I needed an extra-long booking slot for my smear test. I’ve had nurses run panicked to get extra assistance from their senior colleagues when they couldn’t find my second cervix during the smear test. I ended up having to direct both professionals verbally as they guided the stick in. As a result, I’m now completely and utterly unfazed by any such examination or procedure. 

So when it came time to meet with the consultants, in preparation for having a baby, my very first recommendation was for them to do an internal examination, so that they would also understand my anatomy. This was always dismissed as unnecessary. Obviously, I knew my body better than anyone at this stage and just wanted to receive the understanding and informed guidance of a medical professional to determine whether I should attempt vaginal labour or elect for a C-section. No such luck.

Knowing that my cervix was fused and abnormal on my right side, the side I was apparently pregnant on, I rationalised that it wouldn’t be possible to have a safe natural labour. How my body would respond and what the cervix would do during dilation were a complete unknown but doctors always seemed reluctant to speculate on the risks. Surely speculation is part of a healthy discussion and would essentially serve as a risk assessment. I appreciate they have to remain impartial to a degree and allow you and your partner to make the decision ultimately, but a little medical knowledge being thrown into the debate would have been appreciated. 

Once again, I met with doctors who were barely familiar with what the condition meant. One particular consultant, on first introduction, arrogantly declared that he had reviewed my file and everything seemed normal to go ahead with a healthy labour. Then he was trying to escort us back out the door, ‘next!’ Clearly having scanned over the term ‘Uterus Didelphys’ and disregarded it entirely. Despite my concerns and continued requests to simply be examined (gets sort of awkward to keep asking after a while), I was told by the same male consultant that I should just ‘give it a go,’ when it came to natural labour and that it ‘may cause severe internal tearing’ as a possibility. Errr, you try it mate!

In the end, after requesting a transfer, I met with a more decent and helpful consultant who still deemed an examination ‘unnecessary at this stage’ but did support my reasoning about the risks involved, told me to trust my instincts and that I know my body better than anyone else. It was welcome encouragement and it helped myself and my partner (now husband) make the decision to elect for a C-section, to eliminate the unknown and possibly life-threatening risk of attempting labour. A C-section obviously comes with its own set of risks but it was a more controlled approach and it was finally agreed that the risk of vaginal delivery meant that I may end up needing an emergency C-section anyway. 

So there we were, suddenly booking the date of our daughter’s birth. The doctor made a phone call in front of us, and then we were presented with the choice of two days available. I refused to select. It felt insane choosing her birthday! The doctor simply opted for the first option and we were booked in, like a hair appointment. Still to this day, one of the strangest moments of my life.

May 2023