Complex Gynaecology

This experience highlights both the medical and emotional dimensions of living with persistent cloaca. It underscores that quality care is not only about technical expertise, but also about appropriate timing, careful preparation, and psychological support.
By sharing these reflections, the author contributes to helping future patients and families feel acknowledged, better prepared, and less isolated when facing similar challenges.

 

I was born with persistent cloaca, which affects the vagina, urethra, and bowel.

My bowel was reconstructed when I was a baby, but my consultant told my mum that my urogenital tracts would be operated on when “I was older”. 

As I grew up, my mum would ask about this at my review appointments. 

Each year my consultant would give similar responses, saying that there were many risks involved, that they needed to see how the structures developed as I grew, and that it might be best to wait until I started menstruating.

We understood these explanations to some extent, but we wanted a plan, a clear way forward. My mum was worried that surgery during an important school year might affect my education. I remember her saying repeatedly, “I don’t want my daughter falling through the net.” She asked my consultant for a second opinion. We attended the appointment, but it did not lead to any clear outcome, so she requested a third opinion.

 

At the third opinion appointment, they carried out scans and other tests and told us that I had started my periods, but the menstrual flow was blocked.

The consultant then referred me to two specialists who were highly skilled and experienced in the type of surgery I required.

They scheduled my surgery for approximately two months after this third opinion.

 

I began to experience severe pain and was prescribed strong painkillers.

My mum explained to me that I had been born without a vagina and that the

doctors might have to perform a hysterectomy.

I tried not to think about this. Instead, I focused on getting through the next few months,

but it was difficult.

 

I felt very isolated from my peers.

All I could think about was the surgery, but I couldn’t talk about it with them because I felt embarrassed and worried about what they might say.

I also avoided talking about it because doing so would have made it “real”.

 

The day of my surgery arrived.

I was relieved that the blood would finally be able to come out, but I was also very frightened about what might happen.

When I woke up nine hours later, I experienced the worst pain I had ever felt.

When my main surgeon came to see me, she sat on the edge of my bed. I remember thinking that she seemed like a kind person who genuinely cared about her patients.

I can’t remember the exact order of what she said or her precise words, but what I understood was that she had removed about a litre of blood from my uteruses (I have uterine duplication).

She lifted the one-litre bottle of water on my bedside table to demonstrate the amount.

She told me that they had not needed to perform a hysterectomy, but my fallopian tubes had to be removed because they had been badly damaged by the blood.

If they had been left in place, I could have had an ectopic pregnancy.

She explained that if I ever wanted to have a baby, I would need to have IVF.

I remember thinking that I did not want any further medical procedures.

I felt that I had already been through enough in my life.

I also felt that the chances of IVF being successful, given my condition, were probably slim.

I hated the feeling that I had no control over my fertility.

I was angry and felt that this situation should have been prevented. I later had a meeting with a member of my original consultant’s team, accompanied by a psychologist so that I could ask questions and discuss what had happened. They told me that they could not have known about the blockage. Hearing this only made me feel more angry, as it felt like there was no accountability.

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Loss and Grief

Having surgery to reconstruct my vagina and urethra was difficult enough without this additional loss. At the time, I did not realise that I was grieving. I coped mainly through avoidance and denial. I tried not to think about it or talk about it.

I would tell people that I didn’t want children because I didn’t like them and enjoyed my independence, as though it were a choice and I had control over my fertility.

In reality, I didn’t.

Over the years, I received a great deal of psychological therapy. I think that was helpful, although I cannot pinpoint exactly what it was that made the difference.

I think that, over time, my feelings have softened.

I no longer feel the anger or bitterness I once did; instead, I feel a sense of sadness about the situation, along with an acceptance that this happened and that it cannot be changed. I am writing this so that no one else falls through the net.

 

I have a few final reflections:

• In my view, the surgeons who performed my surgery were the right people for the job. Our condition is very complex, and we deserve the best possible care. I have thought about what might have happened if different people had done my surgery. I don’t know for certain, and I don’t like to dwell on it, but it could have had a different, perhaps worse, outcome.

• I think that if your daughter or you have a blockage, it’s not enough to just have the right surgeons. Surgery also needs to be done at the right time for the best possible outcomes. Blockages need to be identified as early as possible, with steps taken to prepare for surgery and to prevent or remove blood buildup.

• This plan should be communicated clearly to patients, both for reassurance and so they understand what to expect.

• Prior to surgery, and afterwards, to reduce social isolation and anxieties about people finding out, I think it can be helpful to prepare what you want to tell others and how you want to answer their questions. 

• Of course, you can’t prepare for everything, but I believe role-playing with someone may helpful. 

• I listened to a presentation by Dr. Laura Judd-Glossy (Clinical Psychologist), who talked about the “Rehearse Your Response” (RYR) framework. I also had a discussion with some parents whose children have Anorectal Malformation (ARM), and from that conversation I learned that it’s okay to kindly tell people if you don’t want to talk about something. This was quite reassuring, as I had always thought I had to say something.