Forum

Managing Bladder

Hi

I had my bladder assessment appointment which I felt super confident about I ‘ve been self cathing 4 times a day using pads at night as security and feel in control its not perfect but I ve not had infections and only have the odd accident .Mainly if I am late self catheterising as I just dont feel my bladder getting full. I really struggle to empty it in the normal way just getting a few drips for loads of effort’

However they want me to reduce the catheterising to twice a day ie first thing in the morning and before bed . I know if i go even half an hour longer than normal I leak so am really unhappy .They have reduced the number of catheters on my presciption and it just feels like a cost cutting excercise

I know that in an ideal world I wouldn’t need to do this but its given me so much confidence back and I dont want to go back to wearing pads all day and spending hours in the loo

A very fed up Ellie x

Oh dear. This doesnt sound right at all! People who have full control of their bladder go more than twice a day, Im sure! So it could be a cost cutting exercise indeed!

Have you asked why your catheters are being reduced in number?

If your bladder gets fuller for longer and you feel very unconfortable and at a risk of accidents, and even infections, then have a word with your continence nurse or GP.

It is unfair to leave you suffering and unhappy, for the sake of cost cutting.

pollxx

I know I cant believe I went along with it I think I was just so shell shocked.Some appointments your almost expecting a fight but this was one I was almost expecting a pat on the back from for managing so well.

I do have a bit of a stockpile as I got extra catheters whilst I was pregnant but didnt use them I think I will just go and see my GP and explain he is usually really good

Ellies

Good luck for that hun.

pollx

Sometimes we have to stand up for ourselves. Beware of the so called experts. lf you have a MS nurse - perhaps they can help - or of course your GP. Why change a system that you are comfortable with - and more importantly no infections. Both Poll and l have a SPC - so we do know what bladder problems are all about.

Thanks Pol and Spacejacket

I’ve seen my GP who as always was great explained everything and just said to carry on as I am .The text book worry is I will loose capacity and the ability to empty my bladder without a catheter which I can understand.

But hey if something isnt broke then dont try and fix it and if I end up with an SPC in a few years I can live with that more than I can live with incontinence now.

Ellie x

Yeh Ellie. SPCs sound horrendous and no-one would ideally want one, but if the alternatives arent working then, it could be the way to go.

pollxx

My SPC - has become a part of me now - 18yrs. l wish l had had it done years before as my incontinence problems go back 30yrs.

There is nothing more degrading then bladder/bowel issues. Does nothing for ones self-esteem. Do try all avenues - the new meds/ldn/botox and look up Sacral Neuromodulation - the latest in b/b control.

But its not the end of the world - if it comes to a SPC - you will be surprised how easy it is. l wear tight jeans/leggings/shorts etc and you would not know. Look up www.healthtalkonline.org living with a urinary catheter. l am on this helpline in the over 60’s group - there is a video/recording of my interview. lts good to see/hear of other people and how they cope. l took part - last year - as l wanted to put forward how it is from a user’s point - and not the so called health experts.

Thats so wrong…sadly those without ms have no idea what its trully like to live with…my continence nurse is trully awful and has no iddea about ms bladder and bowel…if its working for you stick.at it last thing you need is more problems…i get so fed up of health ptofessionals advising me ehen they have no idea…i have progressive ms and listen to myself now…x x

I am new to dealing with bladder problems - another case of denial.

Both my MS nurse and a continence nurse at my local MS Therapy centre say going to the loo 6 times a day is normal/average.

I know nothing about self catherisation as I’m at the using pads at night stage. I have an appointment with a urologist next month, which I’m am not looking forward to in one way but am in another way.

Hi Ellen,

be brave, there are so many things that can be done for bladder problems. I’ve been throught the lot! I started with drugs to calm my bladder to self cathereising. I did this for a long time, up to 7 times a day. I now have an SPC and have had botox. Doctors will go with the least invasive alternative first. I think my bladder has been one of the most degrading ms issues for me but theres no stopping me now! I hope you get on ok

Sara x