An MS crisis with my dysfunctional bladder

An MS crisis with my dysfunctional bladder

An MS crisis with my dysfunctional bladder

29 March 2020. This MS crisis started when I was on holiday in Valencia with the family in February 2019. I woke up one morning wanting a pee but I was unable to insert a catheter into my bladder. The hotel staff were fantastic and directed me and The Wife to hospital where I was diagnosed with a UTI and an indwelling catheter was inserted into my dysfunctional  bladder.

A week later, back in the UK, the catheter was removed, and I was able to restart Intermittent Self-Catheterisation. Phew, time to restart my MS-normal life.

Its not a UTI

Fast forward to 31st of May 2019, 2 in the afternoon, and the same problem occurred, I could not self-catheterise. I took myself to the nearest A&E hospital, in Watford, and explained the problem. Another indwelling catheter and I was kept in overnight. Next morning, I saw a neurologist who said that I would be admitted for an exploratory operation to check out my prostate. First, I needed a CAT scan and an investigation by cytoscopy.

Whoops

During the cytoscopy the doctor saw scarring on the bladder wall that could possibly be evidence of cancer. The hospital changed the investigative operation of my prostate to a biopsy of my bladder wall to check if it was cancerous. Hey, good news, it’s not cancerous. Bad news I still had the bloody indwelling catheter and I was discharged. I was angry and very pissed off, also no nearer to knowing why I could not self-catheterise.  A continence nurse checked that I could successfully self catheterise a few weeks later. As they say ‘hope springs eternal’.

My dysfunctional bladder

A consequence of my MS is that my bladder will have a spasm. There is no warning, no consideration to where I am, who I am with or what I am doing. My body malfunctions and the bladder leaks; this problem has been getting slowly worse since the 1990s. I started intermittent self catheterisation in about 2005 but that did not solve the problem. In 2017 I received Botox injections into my bladder wall. It’s wonderful, suddenly my wretched bladder stopped having a spasm. Indescribable relief, no more worry about my bolshy bladder.

My last Botox injection

The benefits have almost finished. It happened over 18 months ago in August 2018 and I need one every 12 months. I’m not too sure what causes the bladder to have a spasm, but I do know it is inevitable if I have caffeine or alcohol. The downside of Botox is that I can only empty my bladder by intermittent self catheterisation but now my bladder has spasms even without these stimulants. If I still had a indwelling catheter then urine would leak out around the sides, it happened more than once. Either option is a ghastly lose-lose situation.

Fast forward to March 2020

I have an appointment with a neurology consultant. The end result was bye-bye to the indwelling catheter but also no caffeine and no alcohol. I’ve now been on the wagon since 18th March, my life is a challenge in many ways. My bladder is very unpredictable plus no alcohol or coffee all of which is no fun.

Hope springs eternal

I recently received a letter giving me an appointment for my Botox injection on 19th August. That is nearly 6 months down the line. Meanwhile I must continue to live with my dysfunctional bladder and without coffee or wine. I moan but I do know MS is much worse for other people

Associated articles

Five fly to Seville and I got myself a UTI

 

 

 

 

 

Caffeine is the world’s most widely consumed drug

 

 

 

 

 

March 2020

4 responses to “An MS crisis with my dysfunctional bladder”

  1. Ann Marie Sorondo says:

    I understand what you’re saying about the bladder. I was diagnosed a few years ago with neurogenic bladder and have to catch daily. sadly my Botox wore off a while ago but with insurance change, i need a new doctor too. this virus isn’t helping because no one can contact my urologist atm

    • Hello Ann Marie,

      Yup, a bad bladder is bad news especially when face to face meetings are off the agenda. Gotta give up caffeine and alcohol 🙁 Also maybe something available to calm the bladder irritation. Hope its sorts out soon.

  2. Joanne says:

    I spotted the lyric “should have stayed at home” – I had wondered why you had gone for such a modern song this time!

    • Hello Joanne,

      I read a very positive review in the paper, liked the songs I listened to so I thought I would give this a whirl. The is also an acknowledgement of the coronavirus epidemic.

      For those who think this is a bit cryptic then I always include a YOUTUBE video of a piece of music in my emails which goes out when I publish a blog

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.