I am a medical secretary, married with one daughter and live in West Sussex. Since May 2004, I have lived with the effects of cauda equina syndrome (CES) following an operation to remove the affected part of the disc in the spine (also known as micro-discectomy and laminectomy of L5/S1).

I had suffered from sciatica (pain that radiates from the back and travels down the leg) for 11 years prior to surgery after I slipped on a wet floor whilst waitressing in 1993.

After visiting my GP, was put on long-term anti-inflammatories and co-dydramol (a painkiller). I also had chiropractic treatment and various physiotherapy sessions.

On 17 April 2004, I suffered a horrendous episode of sciatica after moving some furniture at home.

The out-of-hours GP came round and gave me an injection of pethidine (a strong painkiller) and advised me to make an appointment with my GP, which I did.

The GP referred me to Orthopaedics. I later had a rheumatology appointment at the hospital I work in and was sent home with painkillers. Four days later, I had a caudal epidural injection.

A couple of days later, I went into urinary retention (which is where you cannot empty all the urine from your bladder). My GP attended at home and community nurses were sent in to catheterise 2.5 litres of urine.

The capacity of an adult bladder is between 400ml and 550ml. A female bladder experiences a first desire to empty at around 150ml to 250ml, a desire to empty at 300ml to 400ml, and a strong desire to empty at 400ml to 600ml.

I was later taught how to self-catheterise by the community team. In early May, I was admitted to an emergency assessment unit, and I was finally given an MRI scan. This then led to my microdiscectomy and laminectomy taking place on 5 May 2004.

I had various follow-up appointments following my surgery during which I was weaned off my painkillers.

However, there were no discussions regarding other aspects of CES. There were no referrals or support with bladder and bowel issues, no sexual health referral and no discussions with me, my husband and my family on how to live with CES.

I was discharged with laxatives and catheters and left to get on with things as best I could.

I was never informed at that time that it was cauda equina syndrome - I only noticed this diagnosis on paperwork following another admission with sciatica in 2013.

I understand CES now. But, in order to do that, I had to do my own research and networking and it all came 15 years too late.

The effects on my marriage have been difficult, although I have a very understanding husband.

We were advised not to have any more children; thus, my daughter is an only child.

I am unable to do all the things I used to love, particularly ballroom dancing and horse riding as I do not want to risk a further fall and another episode of CES.

I avoid being away from home overnight as much as possible as I find managing my bladder and bowel issues difficult.

I became part of the Critical Friend Group after I introduced myself to a Consultant Physiotherapist who I had recognised whilst desperately searching for help with my situation via YouTube.

When the project started, he asked me to become involved. I said ‘yes’ because I wouldn’t wish this condition on my worst enemy and my hope is that it will help people be treated early, before the progression to CES and all the lifelong issues I now must live with.