Continence nurse

I’ve asked the ms nurse to refer me to a continence nurse. What might I expect, or will I be fobbed off in the same way that the ms nurses fob me off. Sorry to be so cynical but my experiences with ms nurses and neurologists in the eight years since my dx has been generally pretty negative. However, back to my bladder (and sometimes bowel). I suffer from what I believe is called urge incontinence. Some of the time I just can’t quite get to the loo in time, it’s not helped by the fact I can’t get anywhere in a hurry. I also have a problem with frequency, especially during the morning until I’ve been up two or three hours. Now during the night I’m having to get up between three and six times a night, which does nothing to help the energy levels. An ms nurse did a bladder scan about six years ago and said my bladder wasn’t emptying fully but she didn’t say anything could or should be done about it and I never saw or heard from her, or any other ms nurse again. I’ve made this latest request by phone.

Hello Flowerpot

I’m amazed the ms nurse did a bladder scan, showing you were not emptying your bladder fully but did no referral. Have you had any problems with urine infections…just out of interest?

You really should have seen your gp but never mind. I’m sure your continence nurse will be very helpful.

I’ve never seen a continence nurse myself but one of my friends have. They have ben great with her and even arranged for her to see a urologist.

Good luck

Hi, in my own experience, the continence team have been very helpful.

A few years ago, I had a bladder scan at home and I was holding just 50ml after emptying my bladder. That was ok and the nurse said up to 150ml is acceptable.

I had poor mobility and getting to the loo in time, was difficult and not always successful. I needed thicker and thicker pads, until the district nurse prescribed big NHS saved me a lot of money.

I was put on oxybutynin, which is a bladder calmer.

Things remained like that for a few years, but as my mobility worsened, so did the wetting accidents.

I now have a supra pubic catheter and am hoisted for every transfer.

Good luck for when you see your continence nurse.

luv Poollx

I have a continence nurse and she has been wonderful. I can contact her whenever I have a query and she rings me every now and then to check up on me. She is worth her weight in gold and has been the most helpful person I have dealt with since being diagnosed! Well worth having! Teresa xx

I have a continence nurse who is fab. I’m taking oxybutynin to help with my bladder control (I’ve got urge incontinence). Any time I need help or advice I can phone her and leave a message within two days she always returns my call.

Hopefully you will have a fab nurse too, I’ll keep my fingers crossed for you!

Freckles xxx

Thank you everybody. This is so encouraging xx

My continence nurse was lovely. She helped with pads and got me on medication (solifenacin) which has calmed the frequency and urgency a great deal. Not perfect, but live-able.