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Overcoming the continence stigma – Chloe’s story

In the latest of a series of blogs to mark World Continence Week, Chloe Smit, who has grown up with bladder problems and now works as a continence nurse, shares her experience:

I began experiencing bladder problems at three years old. It would really hurt when I urinated.

The problem continued on an almost weekly basis throughout my childhood and into adolescence. By my teens, doctors repeatedly prescribed me antibiotics for urinary tract infections (UTIs) and I was taking medication to relieve the symptoms of cystitis.

As an 18 year old girl starting university I experienced a lot of stigma. GPs see a lot of young girls coming in with cystitis caused by sex and assumed that I was one of them. I had to do a lot of chlamydia tests. It was a difficult time.

I thought my pain and taking regular medication was something that I would have to put up with for the rest of my life. That was until I saw a new GP. I was desperate and wanted another opinion.

All it took was this one GP to say the antibiotics weren’t working. She referred me to a urologist and a whole other world opened up after that.

I was given a cystoscopy and the results showed there was nothing abnormal with my bladder apart from that fact that I have a bladder capacity of approximately 1000mls+, which is about double the normal capacity. In some ways it was a relief to hear there wasn’t anything wrong, but at the same time it was frustrating because I still didn’t know what was causing the pain.

After the cystoscopy my symptoms cleared up for a while, but I then began to experience urinary retention. I had developed a fear of going to the toilet because of the pain I had experienced. I was only able to urinate twice a day, which began to re-exaggerate the painful urination I had previously suffered from.

In 2014, I was referred to a urodynamics specialist who confirmed I had an overly large bladder that was not fully emptying. It was because of this that I was experiencing recurrent UTIs and cystitis. The results of the tests showed my bladder had stretched so much it had lost its tone. So I had to retrain my bladder and I was advised to begin self-catheterisation every night to help it to empty.

I really didn’t know what to expect and didn’t understand what self-catheterisation involved. But I had an appointment to see a specialist nurse and she was so friendly. I was treated with dignity and came away feeling really positive. It was surprisingly easy to do.

I’m 23 years old now and I haven’t needed to self-catheterise for more than a year. Although I am still prone to infections, these are nowhere near as bad as they used to be. I have a new lease of life now. I can go out without worrying about where the nearest toilet is. Not having to live with painful urination or being unable to pass urine has helped me to feel much more normal as a person.

My positive experience lead me to pursue a career in the field. I am now a continence nurse working in the community in South East London. I aim to help people experiencing any degree of continence problems lead as normal a life as possible.

  • NHS England’s Excellence in Continence Care is a practical guide for commissioners, providers, health and social care staff to put into effect the best care for patients. It also provides information for the public.

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2 comments

  1. Linda says:

    Very courageous and inspirational Chloe, congratulations and long may your progress continue.

  2. Jacqueline.Emkes says:

    Such an honest helpful account. There are some brilliant clinicians who understand about dignity about positivity and …..about bladders. I would urge anyone with issues to seek out the brilliant care that is available. If we all were as brave as Chloe and talked more about this ‘taboo’ subject we’d help more people. Thank you for raising the subject.