Jane

I had just started Primary School in the UK, and was nearly five years old when I had my one and only VCUG. Unfortunately, it was what I have called ‘the end of childhood innocence’ and I think that everyone who has been through this sexually traumatic ordeal will understand what I mean by this. I remember it was an autumn day, and my mother putting me into my favourite green velvet dress to go for a ‘special x-ray’ as the medical records I later obtained revealed it had been portrayed to my parents. My next memory is going into a room, with two nurses, sitting on the end of a bed and being told to drink something that would make me ‘sleepy’. I think I was weighed, then asked to undress in front of the nurse. Naturally, I kept my underwear on, and she added ‘and your knickers, too’. At this point, I started to feel that something was wrong, and started to feel very vulnerable. I then remember being given a mask to play with and a woollen blanket placed over me. I’m not exactly sure what was going on, but the nurses appeared to be using paper towels to clean my genital area – and it hurt. Not only did it hurt, but they were staring at an area that was not supposed to be exposed or touched in this way. I felt really ashamed at this point, of what was going on. I think I just froze, like a startled rabbit. My mum was watching from the side, somewhere…no idea how she felt and she never revealed it, ever. I remember asking for my father, who was sitting outside, but they wouldn’t let him in. At some point, I needed the toilet (I assume, from the pain they had caused) and was carried naked, in a blanket, in front of the other children in the unit to the toilet. I felt extremely self conscious that they would see me like this. Another memory, is when this ordeal was over, I saw the catheter in its wrapping, placed on the bed I was lying on, and shuddered. I assume I knew by then what was going to happen. And then there is a total blank when the nurses inserted it. The next thing I remember, is being in another room, on a table with a camera and seeing this ‘thing’ sticking out of my ‘wee wee place’. I was only four years old, and I thought I was a boy. I felt disgusted. I needed the toilet again, and they tried to make me urinate in front of them on the bed in a potty. I’m not sure what happened…my mother told me they were going to pump dye into my bladder but I refused to cooperate. But next thing, I was in an x-ray machine and they were telling me to look at pictures of the inside of my bladder. I have no memory of when the catheter was removed, or how they managed to fill my bladder in the end. And that is pretty much it – my memories are very patchy, although what I do remember is still quite vivid, 50 years on. Before I went in for that medical tests, I had admittedly had issues with UTIs, and allergies that had caused health issues. But I had friends from playschool and had started school well. In the weeks that followed, there were pronounced differences in my behaviour. I had memory problems and indecision, I started acting out what had happened with my dolls (this continued for quite some time) and I became sexually active, which still feels quite shameful, but I didn’t know what it was (at five years old – a counsellor later told me, I must have orgasmed during the procedure). At school, I didn’t like getting undressed for physical activity, and when we had to lie on our backs, with our knees bent, it triggered me in a huge way. Life went on, with decreased confidence in myself, but it wasn’t until I got to the age of having a sexual relationship that things really started to come out of the woodwork. I felt embarrassed undressing in front of anyone, as it was likely a reminder of what had happened with the VCUG. I felt uncomfortable having anyone stare at me (in general) and particularly, in a sexual way. And worse still, when I did have penetrative sex, it hurt like nothing I could ever have imagined. It was like an endurance test for me, with no pleasure – only pain. And it still is – something I avoid. So, right at the age I should have been meeting someone at university, I was holding back, because I was scared of sex. The thought of it brought me no pleasure whatsoever. And yes, this has messed up pretty much every relationship I have had, ultimately messing up my chance of having a healthy relationship and a family, which was what I had wanted out of life. I also have a latent fear of doctors and hospitals. And get extremely anxious if I have to go anywhere near them. The power differential is always there, and I often don’t speak up for myself, or when I do and they challenge me, I go mute. Unfortunately, I’ve had a lot of health problems over the years, and have been predominantly single, and as a woman, this has been VERY difficult. The procedure also left me prone to anxiety, prone to freezing in power-laden situations and and vulnerable to further trauma (of which, unfortunately, I've had many). I did eventually seek counselling for this, in my twenties, and everything was so bottled up, it was really hard to talk. I think the counsellors I saw thought I was going to say I was sexually abused as a child or raped, and got a shock when I described what happened. And that is every single one of them. One tried to get me referred to a trauma centre and they rejected the referral, which was very sad, because it didn’t recognise a VCUG as a traumatic experience (this was in the 90s). Finally, I did some online research and contacted Gail Goodman, who had done some research on trauma and VCUGs. The first person I had met that ‘got it’. She told me she had shared a video at a medical conference of a very young child going through what I think was a cystoscopy but none of the other medical staff acknowledged it as traumatic. I found this to be unempathetic and quite shocking. I wish I could say that this experience strengthened me, but the fact it, it didn’t. It wrecked my life in an escalating way. It feels like I’m holding on to a shameful, dirty secret, and I’m so glad that you have set up this website for people to talk about it. I know I’m not alone in how I feel about this – it’s like being raped as a child, but in a really twisted way. And that is what produces the shame from it, as well as the fact that it is medically ‘legitimate’ to do this to children. I’ve come to accept it and the ramifications (ongoing), and I think the only thing I would say to anybody who is going through the isolation of holding onto a shameful secret like this, is to find others who have been through it and share with someone who understands. The more you can take ownership of something and put it out there in the open, the less shameful it becomes. After all, you were not the one to blame for what happened then or afterwards. To a urologist, I would strongly advise a watch and wait approach, rather than ordering this test. And making sure that this was done under general anaesthesia or the ‘twilight drug’ and heavy sedation so that there was no traumatic memory of the procedure. This is routinely done with procedures such as colonoscopy – I see no reason why this should not be a standard procedure for a VCUG if it is really deemed necessary. I forgot to add something to my submission this morning. One major impact this had on me was that I felt a deep sense of betrayal - the people who were supposed to help me hurt me, and the people who were supposed to protect me stood by and watched/did nothing to stop it happening. Betrayal is an awful emotion to experience at such a young age.