Being referred to continence nurse

Everyday living
1

I’ve just received the write-up, over a month later, from my last neuro appointment.

Although we did discuss that I am having some issues with urinary hesitancy, AND that I am having to get up at least once a night to pee, we did not discuss that these were serious enough to merit onward referral, so I am shocked/concerned to find that he has put in the letter that he is arranging this.

I am very worried about all I have read re urodynamics tests etc.

I am someone who, before MS, found it difficult to “go” in a public toilet, or anywhere that was not my own, due to social anxiety issues, so I’m sure I would not be able to “perform” in a hospital setting, and it would become a sort of self-fufilling prophecy - “Oh, you are retaining” (because I’d not been able to go - but could have at home, when more relaxed).

Can anybody please reassure me that as I am not wetting/leaking or having to get up more than once per night, first contact is likely to be just a chat at first, and possibly some medication, and not moving straight to the dreaded urodynamics? Honestly, unless it got a lot worse, I’d rather just put up with it than go through that.

I do sense I may be retaining slightly, but on the other hand, I don’t seem to be peeing trivial amounts. If anything, I am concerned I seem to be peeing out more than I drink, which makes me worry about diabetes. Then again, I am hardly ever thirsty - indeed have to force myself to take enough liquid - so this does not seem very likely.

Tina

2

hi tina

see the appointment and tell the bladder nurse what you have written here.

i was retaining huge amounts but was tried on medication before catheters.

catheters aren’t so bad.

in fact they are a godsend as nowadays i sometimes can’t pee at all.

bladder nurses are wonderful, kind and sensitive types.

good luck

carole x

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3

Thanks Carole,

But I am full of anxiety already, and that is just on reading the letter - never mind an actual appointment!

My neuro is very proactive and tries to help me, but I am a severely anxious type. Last time he arranged me a physio appointment I did not want - again without telling me he was going to - which sent me into a spin. Luckily was able to just contact them and cancel.

This time, it’s similar - he’s put me forward for a continence referral, without discussing with me first whether or not I would like this. The anxiety I feel about the referral is actually causing me more distress than the problem it is supposed to help with.

This is a catch-22. When I am referred for help with anything, my quality of life actually goes DOWN, due to acute anxiety.

Tina

x

4

my continence nurse very nice and the first appointment was just a chat but she did make me try and empty my bowel and then she gave me an ultra sound thing to see if i was emptying completely not painful at all just the same thing they do when they are looking at i baby i belive. my trouble is not being able to stop myself going but as you say when it comes to going on demand then i find it hard all i can say is drink lots before you go and try and relax , they just wont to help you and if you think that you are managing everything tell them and they will keep you in the system if you need them in future. all the best and try not to worry about it. katy

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5

I’ve never had urodynamics done. My experience of the continence service is that they ask you to monitor your input/output for a few days (you could actually pre-empt that and do it for 3 or 4 days before you see them).

They usually do a bladder scan as well which tells them how much someone is retaining (over 100ml is when they get concerned) She asks me when I last went to the loo or I suppose they might ask you to go just prior to the appointment. The scan itself is some gel put on your tummy and a scanner is rubbed across and the results magically appear on the screen.

I have had one urology appointment and again nothing more intimate than a scan was done. I’ve been referred for Botox but the 1st procedure is being done under a general anaesthetic so I won’t know much about it!

I hope I’ve settled your mind a little,

Take care,

Sarah x

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6

Hi Tina

My first appt was just a chat so try not to worry.

Like Carole and Katy say just go along and say what you have said above and then listen to what they say and come away and think about it. The decision will be yours at the end of the day.

I quite like my catheter now. I can do much more after catheterising in my own home than I could do before.

Sounds like you just need reassurance from your nurse.

Take care.

Shazzie x

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7

Thanks Katy,

I realise they cannot do anything unless I actually consent to it, so I suppose if I am “managing” and feel further investigations would cause more distress than the problem itself, I am perfectly within my rights to say that, but leave myself on the books, as it were, in case things should deteriorate further.

From what I can gather, getting up just once a night to urinate is not really regarded as a serious problem, and is increasingly common anyway, as people get older, but I am aware I used to go straight through, without having this.

Also I can never lie in bed for long after waking up - which I always used to be able to - as I am conscious of needing the bathroom. It’s not urgent enough that I would have an accident, but enough that I can’t ignore it and have another hour in bed, because it would be uncomfortable. So yes, things have changed, and are at the level of “a bit annoying”, but not so bad that I am afraid of wetting the bed, or of going out in public in case of accidents. In fact, touch wood, there has never been an accident. I just can’t seem to go as long between toilet visits - particularly overnight.

I have had a pelvic ultrasound with full bladder before - for an unrelated matter - and that involved a vaginal probe (sorry if too much info!) - managed to cope with the embarrassment and indignity of that OK. But actually having to pee to order is somehow different - it’s not just the embarrassment factor, but I doubt I can physically do it, because as soon as I feel the least bit anxious or uncomfortable, I tense up, and physically can’t go - sometimes even if desperate. I feel sure that in a hospital situation, I won’t be able to relax enough to cooperate. As I mentioned, sometimes, even before MS, I couldn’t go in a “strange” loo, over anxieties it wasn’t clean, or people nearby were going to hear me tinkle, or whatever. So it’s not strictly just an MS thing - I am excessively self-conscious about it, and if anything’s not quite right, I just can’t relax enough to go. Luckily I’ve never had to use a bedpan, because I’m sure I couldn’t. My mum (who doesn’t have MS) is exactly the same.

All three times after she had given birth, they wanted her to stay in bed and use a bedpan, but each time, she said: “I can’t use that thing! Help me get up and get to the loo!” They weren’t happy, but when they realised she was never going to use - or was unable to use - the bedpan, they let her get her way.

I am so anxious, I have not even been able to eat lunch today, after this stupid letter. You can see exactly what I mean about the attempts to help often making things worse. OK, before, I was having to get up in the night, but I was eating OK. Now I’m not eating, which I know isn’t good, and isn’t taking proper care of myself - but I’ve got myself so anxious I just can’t. If he had thought I would stop eating over it, I wonder if the neuro would have arranged this referral, or decided to let things alone for now, unless there were further problems?

Tina

x

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if you are worrying too much just cancel the appointment no point making yourself anymore ill over something you feel you don’t need . they wont mind as long as you cancel in good time someone else can have the appointment . i just think too myself just go along and see what they can offer me and wether i feel i need there help they have offered me tablets to help with urgency but i have decided not to try them yet as i feel i am not too bad if i don’t ignore that feeling and go when my body tells me to and not put it off for a few mins. please don’t get yourself worked up anymore you have the power to stop it . take care katy

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Hi I can totally understand how you feel I have the same issues I can’t go on demand, public loos were a definitely no no, I would go all day without going at work because of the same issues you describe. When I was in hospital last year I couldn’t use a bed pan even though I was extremely desperate, I couldn’t walk and had to use a commode but couldn’t go if the nurses were there. I was referred to bladder and bowel clinic last year I didn’t have anymore investigations than the scan on the first appointment it was more of a chat to understand what was occurring. At my next appointment they were testing my pelvic floor which I found very uncomfortable to me. I now do catheritise and have to use a bowel irrigation but this is because I was having lots more issues you describe. I do takes medication now as well but I tried all sorts of different things before any of this intervention. My MS has meant I now do have to use public toilets but I still have all the issues of not being able to go. I have had appointments at home as well. I would recommend you go to the appointment you receive and say everything you have said above. I think at only one of my appointments have I had to actually been asked to go. But if this is causing you so much anxiety from what you describe you are managing OK then ring them when you receive your appointment and explain and I’m sure that if you require there help further down the line you can just give them a call. Take care of yourself Barney

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Thanks all,

Sorry I haven’t replied to everyone individually. I think the thing is to go and have the chat, but keep in mind I do not have to consent to any investigations I would find stressful or upsetting, and which I currently don’t feel are merited by the seriousness of the problem. I’m not having “accidents”, I’m not contracting infections - that I know of. Things are just not quite as good as they used to be, but doesn’t that about sum it up for everything to do with MS?

I think part of the problem is it’s come like a bolt from the blue - I had no idea he was going to refer me. I like the neuro, and have thought of him as a good communicator, but this is in fact the second time he’s made a referral without discussing with me whether it is something I would want. I think, if we’d had a bit of a chat about it, and agreed it was the way forward, I wouldn’t have got a fright, because I’d have been expecting it.

I think we’ve had - not for the first time - a bit of a crossed wire. I’m telling myself: “It’s a bit annoying, but I’m doing fine” - meanwhile he has referred me, which was unexpected.

He is very proactive, which I think means he has quite a low threshold for prescribing or referring. For some people, I’m sure that’s good, but with particularly anxious patients, I think it’s a very fine judgement whether additional intervention will help them, or just stress them out. I am definitely the kind of patient who doesn’t really want to experiment with new meds, or have additional hospital visits, unless I’m finding something really very hard to live with. As long as I’m jogging along okay - not brilliant, but okay - I prefer to keep life as simple as possible - minimal hospital contact, minimal meds.

I know this will be in stark contrast with some patients, who expect something to be done about everything. I’m the exact opposite - if I can put up with something, or manage it by self-help techniques, I’d rather do that. I’m not at all anti-orthodox medicine. I just prefer a very low-key approach, unless things get bad enough I have no choice.

Tina

x

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11

Hello Tina

I’m glad you’ve decided to go for the initial appointment. It would be a shame to miss the chance to discuss issues you have in this area.

I’ve been getting up in the night for the loo for a long time now. Wear pads during the day and don’t always make it to the toilet.

My gp has been offering to refer me every time I see her for my review but I’ve resisted. Never had a urine infection, told myself if I ever do then that’s when I might agree to be referred.

Best of luck x

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I find the service really helpful. Having put up with problems for years because I was embarrassed to say or see anyone, on ironsight I wish I had asked for help sooner.

i was given a diary to complete before going, asked to bring a sample of wee. At the appointment , she noted the diary, gave me a ultra scan and checked my strength of my pelvic wall, which is good. Tested the sample for infection. She put it down to the muscle walls of my bladder being a little lazy and prescribed drugs. Unfortunately these drugs affected all my muscles and virtually brought me to a stand still. She did say at the time if they did not work for me she would arrange for pads to be delivered instead. I see her again on the 28th, and I now feel no worries about going. Especially as I know she is on my side.

It’s worth going,

catherine x :slight_smile:

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Good luck with the appointment Tina, I agree with you regarding you’re attitude towards meds I have been like that for a long time. I did recently start taking Amitriptyline though for nerve pain and as a result I find I am not waking in the night to use the toilet and do not need to “go” as soon as I wake…it’s helping with the buzzing, tingling, burning as well. I believe amitriptyline is sometimes used to help children with bed wetting problems and as a consequence it appears to be helping me with my nightly trips to the loo. Something to consider and perhaps discuss at your appointment.

Best of luck

Jan x

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14

I agree its good to go, why not, you might learn something new. There is no way I could pee on demand either so don’t worry about that, it’s pretty common!

I pee several times during the night, and did pre-MS as well, its a pain, but I drink a lot of water so I don’t see it as a concern.

I would only be concerned in this area if I was not in control, but definitely worth chatting to the expert about it so you know how to proceed in future.

Hope your appointment goes well, and remember if it’s really stressing you out, just cancel it, you don’t need to go or think about it at all if it;s not an issue for you.

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15

Just want to say good luck, but also if you do go it is certainly worth taking about 3 or 4 days worth of input/output diaries.

My first app with continence was just pull down top of waistband of skirt/pants only a little way not to the point of embarassing bits…less than if you wear bikini pants. Check with ultrasound and given pads ( I was having leaks at that time )

Taked about referrals, urodynamics etc as my retention level was high despite leaks and I agreed but worried myself sick over it…and I was a nurse all my working life ! However my problems got worse so I went for the dynamics test and no it is not what you would choose to do but if and I do stress IF you need it it is truly not as bad as you will ever imagine.

The doctor did what he needed then both doctor and nurse left the room and let me sit on the seat with measuring container underneath while they both left the room, they are very aware that people cant “go” to order especially if someone is likely to hear.

The nurse just told me where all the wipes etc were, asked if I needed help to get off the exam table to the seat and then left and only came back as far as the door to call if I was ok.

I was behind a curtain area and said I think I have done as much as I can so she came and helped me then went off to fetch the doctor back only when I was covered by a sheet on the bed again.

The doctor did not do any of the very intimate bits, only the nurse and they do pick older more experienced nurses for these jobs who know how embarassed we all get.

I would say once you have had the first ultra sound the chances are you will just be given an exercise sheet and pads if you wanted them since getting up once a night is not likely to mean you need further tests right now.

As you say you are worried about if you drink enough then even if you decide not to go to the continence app, buy a cheap measuring jug ( about 25p for plastic one ) and measure what comes out and also with your kitchen jug measure what goes in…remember some foods have more fluid, like cereal , soup etc. Check for your own self … if you are taking in around 2 ltrs and putting out a little more or less that is fine. If you do not drink anything like 2 litres maybe try to up your intake as close to that as possible.

I will not say don,t worry because you obviously will worry. As you said though, once you see the team you are on the system, you can say yes or no to anything they suggest.

Let us know how you get on.

Ell

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16

Thanks Ell,

I guess now it could be weeks and weeks before I hear anything anyway. It’s already over a month since I saw the neuro, and only now has he written that he will refer me, so I suppose the unknown timescale is just another stressor - I’m going to be nervous of the post for a while.

I’ve had the backache from hell about the last 24 hours, and have got myself panicking it’s a kidney infection, but I don’t have any of the other symptoms, like a fever, or cloudy or foul-smelling water, so I think it’s the old MS muscular stuff, aggravated by stress. The back’s been gippy for a few days (not the first time it’s ever happened - I seem to have a permanent weakness there, and clicking - so pretty sure it’s mechanical). Anyway, yesterday, it suddenly changed from: “Be careful!”, to: “Don’t move!” Have been having trouble with the stairs, getting dressed, and even lowering myself to/from the loo (never mind what happens when I get there - that’s the least of my worries), and Heaven help me if I cough or sneeze (not waterworks - pain). Have been messing about with codeine and heat pads all day, and hope I’m not imagining things when I say I think it’s just slightly better this evening.

Last time this happened, the doc asked me if I thought I was having a relapse. I told her I can’t be sure, but I don’t think so, because the symptom is in complete isolation - it’s more like an injury. I guess it’s always a bit weak there, and if anything happens to make me stressed and tense up, it’s more likely to do this.

So I’m not having a very good week, but it’s making the peeing business almost irrelevant. I can’t even face a bumpy bus ride to the doctor, and if I called a taxi, I’m not sure I could get in and out of it! As it’s not a new thing for me, I’m not unduly worried - certainly not enough to go to A&E, but I didn’t need that this week, when I was already a bit upset about the continence thing.

Then I had an old college buddy not asking me, but telling me I’m going to Slough next month, for a reunion - one of our former classmates is visiting from Australia, so it will be a rare opportunity. I said I was up for it, but that was before the back went! I still don’t know when in November it is (the ex-pat bloke can’t confirm yet), so I’m only hoping it’s not next week, because if it is, there’ll be no way I’m going, short of a miracle. Even if the back is a bit better by then, I can’t risk everything by hauling luggage on and off a train.

Pffff! I feel about 90. Spending most of the time in bed reading. :frowning:

Tina

x

17

hi tina

i like your comment about feeling 90.

in my head i’m still highly sociable but in reality it ain’t happening.

really hope that you are well enough to go to the reunion, so give yourself a good talking to and get into recovery mode!

i’m sure you can do it. you come across as a very determined person.

carole x

18

Thanks everyone,

Sorry to whine on.

Logically, I can see there are three pretty unconnected things going on.

  1. I have a bad back (this one is probably overshadowing pretty much everything at the moment - pain is a terrible disruptor of commonsense)
  2. I have an as yet unscheduled appointment with the continence nurse (date to be revealed - the feeling it could be sprung on me at any moment is not helping the anxiety)
  3. The college reunion - more uncertainty. (a) When it is - like the nurse appointment, I feel it could be sprung on me at short notice. (b) Whether I’m well enough to go anyway, because, as things are today, I wouldn’t be.

I know none of these things are insurmountable - and a lot less than some here have to deal with - but sometimes I find an accumulation of pretty unrelated things just feels too much to deal with.

Yesterday I placed an online prescription request for repeat painkillers (for the back, obviously, as I am running out). Only to log on this morning to check how it’s doing, to find there’s no record of it whatsoever! I am absolutely sure I went on to the site yesterday and did it. I even wrote a message about why I haven’t booked in for my med review, explaining my back is bad, and I am having trouble getting out and about. I can’t possibly have imagined all that, yet when I log in today, it has vanished into cyberspace. So that means a further delay getting the painkillers. They are not likely to be with me tomorrow, as I’d hoped, and as the pharmacy are notorious for failing to get their act together, they might not manage it by Friday, which means it will stretch over into next week. Most things I’ve requested are NOT prescription only, which means I could go into any chemist and buy them - but I’m not going to be going anywhere with the bad back.

If it’s not one thing… :frowning:

Tina

x

19

Hi Tina. I had an appointment with the continence team.

They were nice to me and nothing was invasive. They just asked me some questions then they scanned my tummy when my bladder was full. No taking off clothes they just use something like an ultrasound scanner to see how much urine you hold in your bladder. The female nurse just pushed up my jumper a little exposing my belly.

Then I went to the toilet, in the normal Outpatients toilets down the hall. There’s no hurry to do this (I was given a cup of water). Gave them the urine sample. She re-scanned my belly now empty. Checked my urine for infections etc and that was me done.

The nurse won’t mind if you don’t want to have the tummy/bladder scan or urine sample test. They would be happy i’m sure to just chat. xx

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20

Hi Tina, you are always here for any of us who have feelings of anxiety regarding any possible forthcoming tests, so, remember you dont have to undergo any test you are unhappy about.

Do go for a chat and ease your mind that there is nothing abnormal about not always being able to go on any loo other than your own.

I`ve been through the continence nurse thing and always found them nothing but helpful and considerate.

luv Pollx