Forum

Bl**dy bladder

Hi all

I am so fed up with my bladder. It was that which welcomed me in the first place to the wonderful world of MS. I was diagnosed with an overactive bladder and put on solifenacinabouy 4.5 years ago. I also had trouble emptying and I succeed but it can take me 15-20 mins!

The solifenacin helped up until last July when I had a very nasty UTI and afterwards I started to feel these horrible urgency feelings again even though my bladder wasn’t full. I had re-trained my bladder to go about 6 times a day instead of about 14 but now I’m going more frequently again.

My consultant has tried me on other meds but they have not worked and I need to see him to find out what else I can do but the appointment is not until April.

What I really want to do is try LDN as I have heard from a number of people who say that it helped their bladder problems. I am so fed up with how long I spend in the loo every day and it does tie me to the house a lot. As I said to my hubby - he probably spends maybe 3 or 4 mins in the toilet a day having a pee, I probably spend more than 2 hours altogether.

Anyway, needed to vent and ask if anyone has a similar problem and do they have any advice? I’m thinking that probably more lesions have developed in that area of the spine which are playing havoc with this problem again.

Sorry for the long, ranting post but this is making me really miserable!

Teresa xx

Hi Teresa

I am sorry you feel so miserable at the moment.  I do not have any solution to advise, but just wanted you to know you are not alone and sending you some gentle (((((((((((((hugs))))))))).

I must admit I am with you on this subject, bladders are a b****y nuisance.

Take care, hope you feel better real soon.

Pam x

I don't know if this would be any use (maybe ask your doctor?) but I had 'bladder' problems and I am sitting 'typing this' with a 'Catheter' on - I didn't initially know what a catheter was? - it's a bag 'strapped to my leg' which 'catches' the urine. It can have 'leakage' (it wasn't 'strapped on' properly) but otherwise, you can forget about going to 'relieve yourself' again - handy if you are 'doing something else at the time - like possibly 'watching a film?' I've been wearing it for about 3 months (I'm 55) and I have to 'go back next month' I don't know what for?

But maybe it wouldn't be for you. You could 'type' 'catheter' into google - http://en.wikipedia.org/wiki/Catheter

Marcus.

Thanks for your hugs Pam, they do help!

Thanks for the info Marcus. I am hoping to avoid a catheter if I can for a while but it may have to be the route I follow!

Teresa xx

Teresa,

  l lost control of my bladder right at the begining of my ms.[30yrs] l ended up having a supra-pubic catheter - which has made a big difference to my life. l wish l had known about LDN back then. l have been taking it for 3yrs - and l feel so much better for it - but it is too late to help my bladder. So do give LDN a try - as so many folk take it just for the purpose of controlling their bladder. l can not see the point of Botox injections as you still have to self-catheterise. Something l just could not manage.  lts the most miserable part of this illness - losing control of bladder/bowel. So l do think it would be well worth your while giving LDN a trial.

F. 

 

Hi Teresa

I have had bladder urgency problems for many years. Detrusitol worked quite well for a while but I still get up several times at night. This is both difficult and painful due to severe spasticity. Following urodynamic tests showing that my blader is still overactive it has been suggested that I could have botox. Could you ask your consultant about this if you are interested? I beleive that intermittent self catheterisation works well for bladder retention. I had to do this in preparation  for the botox. I was not keen to do this but it was quite easy once I had been shown and the nurses were very helpful and supportvive.

Bladder problems really are an awful symptom to live with, I hope you get some help soon.

Carol

Hi Frances

I have a double appointment with my GP on 7th March and I’m going to take the doctor’s info pack from ldnresearchtrust with me in the hope that she will prescribe LDN. Just wish I didn’t have to wait so long!

Thanks for your suggestions Carol, I may have to go down that route eventually but I’m going to give LDN a go first!

Teresa xx

Hi Teresa,

I've had bladder problems since the birth of my first child and have been intermittently self catheterising for 3 years or so. I also recently had botox for my bladder and that has been fantastic. Botox doesn't always leave you needing to self catheterise but you have to be prepared to do it just in case. The self catheterisation is a liberation and it might seem like it would be awful, I cried when I realised I was going that way, but it makes a huge difference. If you can use a tampon you can use a catheter it just takes practise! And a different hole!!! Also, I have catheters that are able to be used in normal toilets so you can take them anywhere and don't need disabled loos, honestly that and botox, gives you back your life.

I hope you get sorted these are the bits of MS that are horrid. I hated the wetting myself and rushing for loos but hey! I use peristeen for my bowels now because kind MS decided to give me that one too and that was a lot easier to come to terms with as I already catheterised!!

Good luck and try not to let it get you down.

BFx

Hi Teresa,

I don't have that problem (at the moment) but just wanted to give some (((((((((((((((HUGS)))))))))))))))

Hope all goes well at your doc's appt'.

Janet x nervous

Hi all,

Thanks for all your replies and sound advice. It has given me plenty to think about as I go to see my GP.

Teresa xx

A continence adviser once tried to insert a catheter into my penis and it was painful! It's easier wearing a sheath and a bag.

I do apologise - THAT WAS TMI!

If you don’t want to use a catheter, then consider using a sheath (if you’re a man that is) - don’t ask me to go into more detail!

With a name like Teresa, I’m obviously not a man!

Teresa

I could self-catheterise until I lost the use of my left hand (I never managed it 1 handed!).

When we went on holiday to America a couple of years ago the MS nurse suggested I had a catheter fitted for the duration of the holiday.  Unfortunately the local nurse fitted it too soon and during the second week I started having problems then ended up with a urine infection so had a miserable journey home.

Now have decided that when I am going out and uncertain about toilet stops I will wear a continence pad (just for my peace of mind) - it seems to work well and because I am less stressed I have always been able to hold on until the next toilet.

It's a miserable side of MS and many people can relate to your issues.  There are 'shewees' and 'travel jons' available to help.  The 'shewees' mean that if the toilets are less than clean or very low you can stand like a man and aim. 'Travel jons' are bags that can be used by either male or female filled with powder that turns to gel when wet. (Also useful on journeys and/or if you have children - no more spills!)

Talk to the continence nurse (ask your doctor or MS nurse if you don't have one, they can refer you.

Good luck, don't forget it is just another problem and we get good at solving them because it's the way we are.

Ann

I could self-catheterise until I lost the use of my left hand (I never managed it 1 handed!).

When we went on holiday to America a couple of years ago the MS nurse suggested I had a catheter fitted for the duration of the holiday.  Unfortunately the local nurse fitted it too soon and during the second week I started having problems then ended up with a urine infection so had a miserable journey home.

Now have decided that when I am going out and uncertain about toilet stops I will wear a continence pad (just for my peace of mind) - it seems to work well and because I am less stressed I have always been able to hold on until the next toilet.

It's a miserable side of MS and many people can relate to your issues.  There are 'shewees' and 'travel jons' available to help.  The 'shewees' mean that if the toilets are less than clean or very low you can stand like a man and aim. 'Travel jons' are bags that can be used by either male or female filled with powder that turns to gel when wet. (Also useful on journeys and/or if you have children - no more spills!)

Talk to the continence nurse (ask your doctor or MS nurse if you don't have one, they can refer you.

Good luck, don't forget it is just another problem and we get good at solving them because it's the way we are.

Ann

Thanks for your advice Ann.

Teresa xx

Thanks Kristy

Well done with being so adept with the catheter - good work!

Teresa xx

Hi Teresa

If you are going more frequently again I would take a urine sample to your surgery and get it checked - your UTI might have come back and you would need more or different antibiotics.

My bladder is a pain too but hey ho that's MS for you.  I usually self-catheterise but during my last relapse I had to have an in-dwelling catheter fitted as I lost the use of my whole left side - I couln't stand or use my hand!  As soon as I was sufficiently recovered to cope with ISC I had the indwelling removed as I hated it - it controlled me as opposed to the other way round!  There is a solution out there for you - get your MS nurse or GP (or in some areas you can do it yourself) to refer you to the incontinence service - they WILL help you find it.

In the meantime you will get loads of support here.

Carol

 

Thanks for that Carol,

Teresa xx

Dear Teresa,

I got your reply, thanks. To be honest, when I read all of the 'replies', I got the 'feeling' that I would not like a 'catheter' and then I had to 'remind myself' that I was 'actually wearing one!' It's not 'that easy' to begin with but there's no pain and (once settled), you can forget that you are wearing one - sometimes I make a 'fool of myself. when I feel that I 'need the toilet' and 'actually go!' (I then have to 'remind myself' that I don't need to go because I'm actually 'wearing a catheter!'). This 'can be good' if you're 'doing something else' and alot of the time the 'bag' actually fills up and you're not even aware of it? (and it doesn't hurt!). I've been wearing mine for about 3/4 months and I'm not trying to 'sell' it to you but if it has to be worn and that is what the 'professionals' say then 'don't worry about it!' - it would be better not to need it at all but if 'needs must' then it 'can be' quite handy 'not having to actually visit the toilet (especially at night, and it is ultimately your choice and it is not permanent! (try it before you accept it).

Marcus.