Finding the right treatment

In the latest blog to mark World Continence Week, a member of NHS England’s Excellence in Continence Care Board shares her story:

I began to have recurring bladder infections following a hysterectomy operation in 2009.

In 2010, I was diagnosed with an obstructed ureter. Urodynamic testing revealed I had considerable reflux from the bladder to the kidney, which caused me pain, infection and even sepsis on occasions. In fact, I had no sensation in my bladder.

Before this happened to me the number of days I’d had off work probably amounted to a few hours a year.  When I developed bladder problems and was subsequently given self-catheterisation as a means to manage the problem, it became a huge burden during working hours.

I was a full time secondary maths teacher. Teachers, like nurses and doctors, spend so much time looking after others they rarely find time for toilets and gulp coffee as often as possible. Not the best recipe for a dysfunctional bladder!

I avoided using the catheter in school or public places, as it was impossible to find an aseptic facility, which meant I suffered more infections. Travelling became a nightmare. Train toilets – which were never great before – now felt too unclean to use with the catheter. With no bladder sensation I could avoid the toilets but knew I needed to empty my ever filling bladder. A dash home or to a friendly person limited my journey times.

In 2013, I found out that I met the criteria for a sacral nerve stimulator, which helped stimulate my bladder to empty better. To my total amazement the neuromodulator actually helped and made my daytime much more manageable and meant my need to self-catheterise reduced greatly during daytime hours.

In August 2015, I had reconstruction surgery on my bladder. I also go to a pain clinic because back problems and many infections have left me with almost constant pain. Most recently, I had an operation to put a stimulator in my spine to help reduce the pain.

My life and that of my family has been greatly affected by my illness. I am left with limited working capacity and feel very disappointed to have reduced my career in such a way.  To have a social life and do normal day-to-day tasks has been very challenging at times. I am grateful for the support I have had.

My urology surgeon, nurse and team, as well as a specialist bladder and bowel physiotherapist, have helped me greatly over the last few years. I have also found great strength through the support group Clean Intermittent Self Catheterisation (CISC).  I hope I can now look forward to better health and that my operation will prove successful in the long-term.

In December 2014, my physiotherapist nominated me to attend a dinner at the House of Commons to discuss bladder and bowel issues. As a result, those patients and clinicians gathered were invited to join NHS England Excellence in Continence Care Programme Board.  This unstoppable Board has managed to pull together clinicians and NHS experts to produce a commissioning framework. Permission was granted to proceed to publication.

Understandably, few patients wish to be identified and so, as a patient advocate, I want to try to represent patients as a group of individuals.

I would  urge anyone with early signs of bladder problems to seek help, literally thousands of people suffer in silence and although it hasn’t been straight forward for me, the support and expertise I’ve had from the health professionals that have looked after me has made a huge impact on my life.

  • 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.
Jacq Emkes

Jacq Emkes is a maths teacher and lives in Bedfordshire.

She is a patient advocate for continence care, speaking at events across the UK to raise awareness of issues for bladder and bowel patients.

Jacq is a patient champion for the It’s Personal campaign, which calls for better services and support for people with bladder and bowel problems.

She is also a patient advocate for NHS England’s Excellence In Continence Care Programme Board and has contributed to the Excellence in Continence Care guidance.