Life Stories – My Toilet Nightmare

From a very young age I realised I didn’t have great bladder or bowel control. Looking back many times as an older child I would wet myself if I laughed too much, if I ran which made sports events at school a nightmare and moving into my teenage years the problems with my bowel started. I found I wasn’t able to hold it for very long, when I needed to go I had to go and then when I was allowed more freedom if I ever was out shopping with friends I would suddenly feel the urge to go to the toilet and would have to find a toilet extremely quickly which as a teenage girl was at first quite embarrassing!

It was unheard in my friendship group and still now to this day with some friends that you would use a public toilet to have a number two in but I soon had to get over that as I literally had no choice!

The situation got worse and in my late teens I mentioned it to my GP who said I probably had IBS and to bring in a stool sample, the bowel problem was that bad that I just put the bladder problem to one side. The thought of handing over a stool sample to the GP receptionist filled me with dread so I didn’t and just carried on. During my 20’s I had quite a few accidents but wouldn’t tell anyone as who wants to know that their girlfriend, their friend had soiled themselves. It was an awful situation to be in and one made worse after having my first child. I had a very easy labour in some ways, only took 3 hours for my gorgeous 9 lbs boy to arrive but probably down to him coming out so quickly I ended up with a third-degree tear which as you can imagine did not help my toilet issues.

In my 30’s and after returning to work from maternity leave I got a new role which meant a whole lot of travel as it was a national role. This brought a whole different perspective to my situation. I’ve lost count of how many meetings I’ve had to cancel because I haven’t been able to hold it on the way to a meeting, or how many times I’ve had to drive down the hard shoulder on a motorway when stuck in heavy traffic to get to the next services. There must be numerous CCTV footage of me running across service stations to get to the toilet, which with a weak bladder wasn’t easy to do. I’ve had to pull over at the side of the road and run into buildings, offices, portaloos on building sites, even people’s houses and asked random strangers to let me use their toilets.

All my standards around cleanliness just go out the window, I’d go in a hole in the ground as long as I could go! I have absolutely no shame left now as to where and whom I’ll ask to use their loo!

My job included going to London at least once a week on public transport and I can guarantee as soon as I get to my local station I have to ask the ticket office for the key to open the toilet. Why when they have someone on site they can’t leave it open is beyond me as this would avoid me having to draw any further attention to myself! The number of public toilets seems to be reducing and in some situations you have to pay. When I arrive at Euston Station I literally haven’t got the time to find 20p to get myself into the toilet as I’m using all the strength and concentration I’ve got to stop myself from going there and then…please just open the barrier is what I’m screaming in my head!

After my second child who I had to have by caesarean for fear of causing any further damage I decided I can’t live like this anymore. During this time my bladder situation had got worse, I remember having quite a bad cough and had to change my clothes three times in the space of 15 minutes as each time I coughed I leaked quite considerably…I mean where does it all come from?!

I wasn’t able to do any sort of exercise at this point, if I walked through the office and sneezed I had to stop and cross my legs to stop me wetting myself and gosh would it come, even just from one sneeze. I was in my early 30’s and having to wear large pads to catch any leakage.

Enough was enough.

I went to see my GP and she was absolutely fantastic and referred me straight away to the hospital, no need for embarrassing stool samples to be handed over!

I was referred to a consultant and on my 37th Birthday, I had a Colonoscopy which wasn’t the present I was expecting, however, it was found that I had a weak anal sphincter which in turn had lead me to being faecal incontinent. In some ways, I was relieved as you do send yourself crazy thinking is it all in my head!!

So in January 2014 I was referred to a wonderful nurse in the Colorectal CNS clinic who started a 12-week treatment called Percutaneous Tibial Nerve Stimulation ((PTNS). PTNS is used to treat bowel dysfunction and is a form of treatment called neuromodulation. Bowel function is regulated by a group of nerves at the base of the spine called the sacral nerve plexus and this treatment involves a small slim needle, just like an acupuncture needle placed just above the ankle. It is then connected to a battery powered stimulator for 30 minutes and delivers a mild electric current along the needle to tibial nerve. It is an invasive procedure and I received this treatment for 12 weeks and then every 6 months after that.

The results were amazing, I felt I had control. A feeling that I can’t really ever remember having, I just wish I’d done something about it all sooner.

During my visits to the nurse I also told her about my bladder so she referred me to the bladder consultant and I had to go through a whole series of tests called Urodynamic Tests whereby they basically fill you up with water and hook you up to a machine and ask you to do a number of actions such as sneezing. There were thankfully no star jumps as I was told and was terrified of, the machine moves you and tests for leakage.

It was found that I had stress incontinence.

In 2015 I had a bladder sling fitted, as I was still fairly young to be having this procedure the sling was made out of my own tissue rather than tape as the tape wears away over time.

After a short recovery period, everything was on the up, I could laugh, I could run, I didn’t need to be rushing constantly to the toilet. It was great, I felt like a new woman, I never allowed my problems to make me a recluse but I can fully understand how it can. There were times I got very down about it, I ended up going on anti-depressants as every morning getting out the house for work or just getting from A to B was such a challenge that there were many times I just felt like I was metaphorically climbing a mountain that I just couldn’t get to the top of.

So many times I thought I can’t do this today, I would leave my house and within a few minutes would need to go to the toilet and would have to rush into the nearest supermarket to use their toilet.

Accidents, whether it be to do with poo or wee, are such a taboo subject that I’m making my mission to talk about it more, with friends, with colleagues and my children. People should know there is help out there and not to suffer in silence like I did for many years and it’s quite a realisation to hear how many people do actually suffer from similar symptoms.

Over the last year I have noticed that my faecal incontinence is rearing its head again…pardon the pun. Thankfully there haven’t been any accidents yet but there have been some near misses, thank god the bladder is fixed and I can make that run across the service station to the toilet. Why are they always the furthest point away, I’m not interested in getting a coffee…I JUST NEED THE TOILET!

I’m not feeling down about some of my symptoms returning as I started to have PTNS more regularly again and my nurse has referred me for Interstim Therapy which is the next step up from the PTNS treatment whereby you have a permanent small device fitted to send mild electrical pulses to a nerve located just above the tailbone.

So there is hope. I never thought there would be, I thought I would always be a sufferer, having explored the Bowel and Bladder website I came across the Just Can’t Wait card which I have downloaded on my work iPhone and also ordered a hard copy, this is a great idea as I’ve often been in a queue and had to just tell whoever was at the front or a steward at a concert that I was going to poo myself any minute and just hoped they would let me go! My advice to anyone that notices anything unusual in their toilet patterns is to seek help because there are solutions out there.

Author – Kay Bagley, Bladder & Bowel Community Member