The Story of My life as a Wetter

My name is Molly, I am writing to you with hope that maybe some of you have had similar experiences or feelings with your condition and how did you make yourself feel better? I am a 19 year old girl and I have been dealing with incontinence/persistent UTI's since I was born.

FORMAL DIAGNOSIS: Stress Incontinence, Urgency, Underactive Bladder, Frequent UTI's

 

*PRE EXISTING CONDITIONS/DISABILITIES:
ASD (Asperger Syndrome)
Hyper flexibility
Dyspraxia
Asthma
Depression
Chromosome Micro-Duplication 16p11.2

 

 

*PHYSICAL*

 

The severe incontinence (needing tena pads) only started when I was in about year 9/10 of secondary school ( about 13/14). Before this age I had severe constipation, resulting in multiple faecal accidents, meaning, the doctors just put my urinary tract problems down to that. But, at about 13 years old I was sent to a specialist hospital in Southampton Hospital called Bursledon House to solve this problem. However, although the constipation had gone away, the urinary problems seemed to stay about the same.

 

Around about 12 years old, I suffered two rather nasty kidney infections, needing to be hospitalised both times; the first just 2 days, and the second, 4. I was very ill and it felt shortly after I came out as though the urinary problems had become worse, I was wetting continuously, needing  to start wearing pads and I had to miss a lot of school, although I'll get more into that in the next couple of paragraphs.

 

For around about 11 years I was regularly seeing a general paediatric consultant, my mum originally paid privately to see him when I was around 5 years old as she was sick of being passed to different registrars but he agreed to see me in his NHS clinic every 3 months, as I say, for about 11 years, until around my 16th birthday. He was supposed to discharge me after the faecal incontinence and constipation had stopped but then of course, the urinary problems were still present so he kept me on his patient list, however referred me onto a paediatric urologist.

 

When I saw the urologist he originally thought I had an overactive bladder and so prescribed me medication (Oxybutynin), which only compounded the problem, making the situation 10 times worse. I didn't see this particular urologist for very long; he gave me an MRI, making sure I didn't have a tethered spine and then signed me off.

Shortly after this, I was referred back onto another urologist, who appeared to be much more helpful. He performed urodynamics, discovering that I had an underactive bladder, rather than overactive, linked with stress incontinence, frequent UTI's because of inability to empty my bladder fully and an urgency when holding a full bladder; until then I am unable to feel it. During the time that I saw him, he referred me onto an occupational therapist to teach me pelvic floor exercises. Unfortunately, however this seemed unsuccessful, resulting in no improvement, if not making things worse (needing to change pad more frequently in the day).

 

After changing my lifestyle habits, sticking mainly to water rather than sugary squashes or fizzy drinks, going to the toilet every 2 hours as I was told, there didn't seem to be any marked improvement, so, after around two years he decided self catheterisation may be a good idea. Unfortunately I was against this as I have other underlining issues, including dyspraxia, and so didn't feel I had the capability to do this. And instead, I asked him for a supra pubic catheter.

 

The catheter was inserted at Southampton General Hospital under GA around April last year. This particular catheter stayed in for around two months until it fell out around June, resulting in a late night trip to the A&E department; after I had told the district nurse I was sure there was something wrong with it. The catheter was fitted a second time in October under GA, but this time at The Royal Bournemouth Hospital. Once again, I had informed the nurses that I was having problems with the line and that I was going on holiday this time as well, however they refused to see me and said it wasn't time for a change yet. This resulted in me having to change the line (fortunately I'd ordered a new line myself from the Great Bear Company, suspecting it would fall out again) in a hotel bathroom in New York, and it falling out the next day (fortunately being back in England.)

 

After both catheters failing on me, I decided I did NOT want another one and had no reason to even consider it again. Shortly before this(23rd of January 2017), I saw yet another urology consultant at UCLH. When I saw her, we discussed my options and the previous problems and testing I had, had and decided a sacral neuromodulator was the best way forward. I was put on the waiting list for this, getting it around July/August. However, with the NHS crisis as it is it doesn't appear like I'd be having it until at least the winter time.

My most recent UTI was incredibly resistant to antibiotics as I had been given all the possible ones so many times and so this time I needed to be hospitalised to be given IV gentamicin due to it deteriorating into pyelonephritis . Fortunately this was only for one night.

 

 

*EMOTIONAL/SOCIAL*

As you can imagine, dealing with all of this whilst trying to complete school with good grades isn't the best so we'll start from the beginning:

 

BURSLEDON HOUSE - When I went away to Bursledon House for 6 weeks (came home weekends), although I understand they were helping me now, I didn't at the time, this led me to have strong feelings of resentment and anger towards my mum in particular as I felt she was the one who put me there, as if she were the one who "abandoned me" even though it was initially my choice to go; my consultant gave me the option between surgery and this. My dad also left our family home the day I was discharged and so this had a massive impact on my emotional wellbeing, resulting in me sharing a bed with my mum until I was about 17 years old.

 

SCHOOL - After Bursledon, going back to school was incredibly hard, I went into Bursledon around mid March and came out early May. As someone who was severely picked on in secondary school anyway (both physically and emotionally) and as someone who struggled to interact socially with others at the best of times, it was extremely difficult to try to fit back in my space as everyone was asking where I had been for well over a month.
Whilst attending secondary school my teachers "tried" to help me; large air quotes on tried, by giving me a toilet pass and trying to work my timetable around my main GCSE's so I could come in part time and do some work at home. In the end though it felt as though everyone just thought I was putting it on and just being attention seeking or milking it, I'm talking about the students and the teachers here. I would spend half the school years telling the teachers I didn't feel well, either because pure humiliation of constant wetting or because I generally didn't feel well because so many UTI's. And the other half of the years begging my mum not to send me to school, either for fear of bullies, or wetting, or just pleading with her to believe me.

 

REFFERALS - I'll make this one short but it had to be included as I still feel angry about it now. Unfortunately, my stupid body's bladder decided to really stop working whilst my mum was in hospital, this meant that when I went to my GP about my constant wetting, he just passed it off as behavioural and said that it was, and I quote "a tactic children use when they're not getting attention", so basically I spent most of my childhood being told I was attention seeking by so many people that I eventually believed it and eventually carving it out in my thigh, but I'll get more into that later.

 

CATHETERS - As I have previously said, I had two catheters placed, and not because they were infected or anything (well, the first one was actually) but simply because they wouldn't listen. But let's not get ahead of ourselves, I woke up in the hospital bed with a line attached, but no bag, this meant the very first thing I did, well, apart from being violently sick from the oral morphine, was wet myself, of course making me feel extremely embarrassed and ashamed as I do every time I wet. When I got home with the catheter it was causing me incredible pain, like, I'm talking about, reducing me to tears. This lowered the activity I took part in, making me loose more "friends" until I was mostly just sat at home, watching TV or going on my PC. As you can imagine, this would get anyone down, but for someone who already had a history of mental health and whose nan just died, well, that's enough to make anyone depressed. The pain the catheter caused me was terrible for my mind set.
Around June, as I said, it fell out. There are two reasons for which this thing fell out, the first being, no one ever listens, the second, I pulled it when I stood up by accident. However, the state it was in when it came out was not just because it had been pulled, it needed to be changed sooner. I got another put back in in A&E after waiting about 2 hours, however I was dealt with no dignity from the doctor (leading me to make a complaint), which of course made me very upset and so when I came home, I had a massive meltdown, head-banging against the wall, resulting in the police coming round. The next morning I was so sick of it and how it was making me feel, making me look fat, the extreme pain, I just pulled it out anyway, placing a sterile bandage on it and leaving it until I was once again persuaded to try it a second time.

The second time was by far worse, the pain was back, even though I knew what to expect, it still felt bad, the body dysmorphia was back but much worse, around December time I started making myself vomit up the food I was eating, I became obsessed with my weight, literally weighing myself  times a day, near enough every time I purged, cataloguing my weight and letting it control my mood, making me angry if I had even put on half a pound more than the night before. As with the first one, it came out a second time because no one listened, but I had expected to feel better about my body again,  I didn't though and so stopped myself  vomiting up food and starting to feel out of control again, I started cutting, first my left arm, then my stomach when I would wet to punish myself and then my "fat" thighs when I ate too much so I wouldn't go and throw everything back up. I am currently trying to stop cutting as I used to do it everyday however I still get "blips" and cut even though the scars are clearly ugly.

In a nut shell, my urinary problems have destroyed my life, and I just want it back. It started off just low self esteem, then a feeling of utter shame and hate to my body then just constant low mood, having daily suicidal ideation, and now just a real loathing towards myself and my whole entire existence, I feel like my body deserves to be cut, like I don't deserve to be loved because of this.