My Life With Incontinence

by Anita Brown

Anita My Life With Incontinence

As long as I can remember I have always had problems with my bladder and kidneys

One of my earliest memories is being pulled out of the classroom because “Anita has done ‘IT’ again”. Done what? I hear you ask? Wet myself. I must of been 5 or 6 years old at the time and I always denied it, because I genuinely believed I hadn’t.

It was like once my brain said “pee” I went from zero to bursting within seconds, I had a funny sort of kneeling-down-thing I would do. I would then have to kneel very still and stay put until the urge had gone away. As you can guess I wasn't popular at school. Sometimes a little bit of wee would escape but only a tiny bit, and that would be okay until I found a toilet to go to. My Mum used to shout at me all the time, constantly asking if I needed to go pee. I tried my hardest.

Mum would restrict my drinks in the evenings as I was a bed wetter, which to my shame, didn't go away until I was about 15

Usually my last drink would be with my evening meal. I used to go to the bathroom to wash my face and suck the sponge because I was so thirsty. I would wake up in the night feeling cold, and the bed would be soaking. Sometimes I would even dream that I was getting up and walking to the toilet, then I’d pull my pants down and start peeing…. only to wake up and realise I wasn't in the toilet.

Mum took me to various consultants but to no avail - nothing seemed to work. I had suppositories, I had medicine to take… no drinks and I STILL wet the bed. Sleepovers were out of the question. The consultant said I would grow out of it eventually. In hindsight it wasn’t dealt with that well at all. I was often shouted at and smacked for wetting the bed which of course only caused more anxiety.

As I grew up I realised that alcohol really didn't help the problem – I’d be peeing every 5 minutes!

After a few drinks my bladder would do whatever it wanted. The minute it was full it would begin to empty. I always had to stay close to the toilets – I’d be peeing every 5 minutes and sometimes I wouldn’t actually make it to the toilet.

Pregnancy and labour caused more problems (my son is now 24). Sneezing, coughing and even laughing could cause me to leak. This is known as ‘stress incontinence’ - I did those pelvic floor exercises all the time but it never helped. On top of all this I kept getting urinary tract infections. At one point I was put on a low dose of trimethoprim for 6 months to see if it would help… it didn’t!

I had started wearing panty liners at the age of 30 and by the time I was 37 I was wearing proper incontinence pants

I was so ashamed. I had gone through various tests as I was getting bladder infections regularly and my choices of jobs didn't help much either. I worked as a home carer and some of the ladies wouldn’t let you use their toilets. I also worked as a driver, picking up cars and taking them from one point to another. Both jobs were high pressure and you didn't have a minute to stop for the loo. There were times when I literally thought my bladder was going to burst and I was just going to have to pee in the car. I did pee into a carrier bag once on the M25 – I was on my way to a gig and got stuck in the snow.

I found it all so embarrassing and tried so hard not to let it limit my life   

I had various tests and procedures done over the years, I even had weights put into my urethra to stretch it and to help me empty my bladder fully. I felt so alone and I couldn't even tell my best friend. I constantly worried about smelling of pee and took extra pants with me when I went out.

I never really spoke to anyone else about this and accepted that this was “just my life”. It was far too humiliating to tell anyone and even when I met my husband I kept it hidden from him at first but I always had to get up to pee at night, somewhere between 3 and 6 times. When it reached 6 times, we knew I had an infection.

There is such a stigma to being incontinent, and yet it’s us women who are most likely to suffer with it 

This is due to pregnancy, childbirth and the menopause. There are many different types of incontinence, including stress and urge incontinence. It could even be due to an overactive bladder, a weak bladder, muscles or nerve damage.

If you are having any of these issues I’ve mentioned, then please visit your doctor

There is so much out there that can help you now and you aren’t alone, honestly. I am now much more open as I realised there are many, many women like me who are incontinent and are suffering. Speaking about my own experiences may prevent others from going through the same things. There is help out there.

Anita Brown

About the author

Hi I’m Anita Brown. Diagnosed with terminal small cell bladder cancer in April 2016. I've had palliative chemo and radiotherapy, and a radical cystectomy and urostomy in August 2017.

I've had problems with my bladder all my life, from incontinence, to kidney and bladder stones, and now cancer. I would like to share some of my experiences - follow me on Twitter.

Recent Comments

  • Howard Thorpe

    I am sitting here absolutely gobsmacked with tears running down my face at the seeming incompetence of the medical profession in ignoring your symptoms for so long and now you end up with your diagnosis.

    Having had 2 doses of the big C myself and hoping at 72 years of age that they have nailed it at last, I can only wish you the best for the future and trust you will carry on with the excellent work you are doing.

  • steve

    I had problems between 2011 and 2017 including in the night, and sometimes still.
    I thought about foods that influence urination, and found these lists of foods that are factors for some people:
    .diurectics
    .purines
    .oxalate
    .nightshades
    Some foods in these lists may be fine for FodMap (fruit sugar, fructose) sensitive people, but affect me quite a lot. Others not.
    Food additives could be influences, and anxiety is a factor for me occasionally as well.

    Of course each food may only affect a single urination problem and not others.
    I took a year or so to start thinking about identifying different urination problems separately as;
    .urgency (rapid development of need to pee),
    .frequency,
    .low quantity,
    .pain-sting during,
    .ache afterward (either in bladder or for males in penis),
    .proximity urgency (need to pee when arriving at a known toilet such as nearing home),
    .leak just before being ready to urinate,
    .dribble after urinating
    .uncontrolable urination, unable to stop, eg when cycling
    I have had all 9. Not now.

    Sometimes my urinary system does really well.
    On a 13 hour flight in August 2018, a sniffle seem to develop in my nose, and to minimise this during the flight I drank 1 paracetamol Lemsip, as well as water. After the flight my bladder peed for 57 seconds, which is the longest time in many years. Usually my peeing lasts between 11 and 19 secs, and a few years ago less than 9.

    For a year I recorded most I ate and drank, period of peeing, and symptoms, with the time of day.
    I deduce that my urinary problems are not straight bladder malfunction, but can be triggered by foods I have eaten. My body can work fine, but sometimes doesn't.

    Do I mean that foods cause my problems - no, but staying away from some foods mean I have a normal life. My body (incl. bladder, kidneys, and prostate) seems to be able to work fine. My view is that I've damaged my urinary control chemicals, and with some combinations of foods my body malfunctions.

    Do I have a history with incontenance?
    From a baby I took twice as long as my siblings to achieve overnight urinary control.
    Aged 12 when I accidentally choped my leg I lost urinary control.
    Otherise no.

    What advice have doctors given?
    Examinations of my prostate did not indicate any issue.
    All 4 GPs and 2 urinary consultants at hospitals said diet had no effect on urination.
    (Without considering data for me, I don't see how these doctors came to say that.)
    One of those GP said that body anixety / stress could be a factor.

    I am nearly normal now with an occassional lapse. I seldom wake at night.
    I have been avoiding foods with purines, (including my favourites; peas and peanuts), onions, peppers, and all nightshades, as well as coffee, tea, hot chocolate, and fizzy drinks, minimising foods with sugar, and fruit juices.

    In August 2018 I reintroduced 4 foods that I did not eat for a year.
    Peanuts seem fine, but not fruit sugar, oats, or peas.
    Oats seem to lead to the proximity issue again, but not always.
    Peas lead to dribble afterward for 2 days.
    During the autumn grape harvest perhaps I ate too many grapes, as twice one day i leaked just before being ready to urinate. I had oats for breakfast though.
    On Thursday last after waking at dawn as usual I did not get to the bathroom in time and weed drops on the floor. Wednesday I had eaten fruit sugar and oats together in flapjacks.

    Do I mean that I have indentified foods that on their own cause my specific problems?
    No - more than one factor is likely present for each problem type, but some foods seem to be triggers. Perhaps in me is a threshold, and problems occur when the amount of some food content becomes more than the threshold.

    How long after eating do I have problems - half an hour to begin and up to 3 days to end.
    Yes 3 days for the proximity problem.
    Hot chocolate may have been the quickest.

    So perhaps check diet as well. . . .

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