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    Old 02-13-2009, 07:44 AM   #1
    Kertie446
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    Self-catheterising

    Hi, everyone.

    I have just been diagnosed with 'lazy bladder' where my muscles are weak and are not emtying my bladder fully or efficiently. After I go my bladder still keeps so much urine in. My urologist has sent me to a continence nurse to be taught how to self-catheterise and I'm waiting to hear for an appointment with her.

    My urologist said I need to do this for about 8 weeks and see how I get on as he thinks it will help to reduce the post residue and gradually my bladder function will fully return.

    I am a bit nervous in doing this as I've never done anything like it before.

    If any of you could share your experiences or tell me how to do it correctly or what you found best I would be very grateful.

    Kind regards

    Niad

     
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    Old 02-16-2009, 12:20 PM   #2
    Kertie446
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    Re: Self-catheterising

    Hi

    I would be grateful if anyone had any advice or tips on self catheterising as I am new to doing it and am due to start this soon.

    Thanks for any advice...

    Kind regards

    Niad

     
    Old 02-21-2009, 12:45 PM   #3
    cancerdude
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    Re: Self-catheterising

    Niad,
    I may or may not have to self-catherize myself,but after surgery on January 12th 2009,after a Radical prostatectomy,I still have the original catheter in (18G Foley) I am going next Tuesday to get a Cystocopy where they remove the catheter, insert a camera into the penis, and look at the bladder where he sutured the urethra back together, which seems to be leaking, then re-insert a new catheter for another few weeks or so.

    I'm curious if they sedate using conscience sedation,or just numb the tip of the penis with lidocaine. OR how you would self-catherize and how painful it would be, if at all?

    Last edited by cancerdude; 02-21-2009 at 12:46 PM.

     
    Old 02-21-2009, 03:13 PM   #4
    Kertie446
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    Re: Self-catheterising

    Hi

    I think it depends on whether your surgeon is doing a flexible cystoscopy or a rigid one. Generally I've read that when they do a rigid cystoscopy they usually do general anaesthetic and if they do the flexible one they just numb the area but you may be able to ask them for sedation prior to the cystoscopy if you feel that you would prefer this so that they can arrange it.

    I'm not sure on how you would self-catheterise as I haven't started yet as I am still waiting after a week to see the continence nurse who will show me how to do this. The surgeon I saw who recommended self-catheterising said that it shouldn't hurt, just feel a bit of a strange sensation.

    Hope all goes well for you and that you don't have to keep that catheter in for too long. It's probably just while it's healing. That's why he is looking via a cystoscopy to check and see why it is leaking as he may recommend doing something to fix it if it carries on leaking.

    Good luck and thanks for your post.

    Kind regards

    Niad

     
    Old 02-23-2009, 08:52 AM   #5
    Kertie446
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    Re: Self-catheterising

    Hi

    Ireally need to know if I can get a self referal to the continence clinic as my urogynaecologist doc hasn't done my referal so I don't know what to do...

    I am fed up with the so-called health profs as they haven't got a clue..

    Thanks for any advice you may be able to give.

    P.s: I'm in the UK where the system isn't very good and long waiting times too.

     
    Old 03-04-2009, 06:30 AM   #6
    Kertie446
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    Re: Self-catheterising

    Anybody gone to a continence nurse session to be supposedly taught how to self catheterise and to find out they are to go in blind?

    Is it normal practice to just be shown images and sent home to do it yourself not under supervision for the first time.

    I'm just a bit concerned as I am worried because I don't know what it's like to cath and no one is supervising me - I'm on my own - that I may cause more damage than it's worth?

    Many thanks.

    Niad

     
    Old 03-06-2009, 04:28 AM   #7
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    Re: Self-catheterising

    I would actually appreciate some advice as I am still stuck and no one is replying to my post..

     
    Old 03-07-2009, 02:28 AM   #8
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    Re: Self-catheterising

    This may help you.

    [url]http://www.cc.nih.gov/ccc/patient_education/index.html[/url]

     
    Old 03-09-2009, 05:11 AM   #9
    Kertie446
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    Re: Self-catheterising

    Hi, friend

    Thanks for the link. I did find it quite interesting and helpful.

    I've just managed to sort something out and have got an appointment at my doctor surgery to see my practice nurse who knows me and my doctor has recommended I see her to be taught physically how to self catheterise as I cannot directly just work off diagrams, etc as my body is so different from every diagram.

    This sort of thing is always difficult in my opinion. It's bad enough coming to terms with doing it, let alone having no formal tuition in how to do it! It's a bit of a joke!

    I've found people on here so much more informative and helpful than medical people. Perhaps it's because they actually understand?

    Many thaks for your help and link.

    Kind regards

    Niad

     
    Old 03-11-2009, 08:52 AM   #10
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    Re: Self-catheterising

    Hi Niad, Sorry I didn't see your posts sooner. I think I know you from the spine boards (hi). I had to learn to self-cath almost 11 years ago after damage to the nerves on my bladder with a uterine rupture. Like you, I simply didn't void in full even though I thought I was 'done'. I was taught to self-cath using a 'visual aid', a model of a women's vagina and urethra that I was shown how to push the catheter tube into and then practiced on. I was then shown how to do it to myself as well. I had to self-cath consistently for 6 months then off and on for 2 years 'as needed'. I haven't needed to since, for the most part. One thing to watch for is that self catheterizing makes you highly prone to UTI's and the meds for the UTI will likely give you a yeast infection. At the first sign of a UTI, go in and ask for the diflucan pill for the yeast infection at the same time since it's fairly inevitable (and the easiest fix -beats the creams in my opinion, especially when you'll be dealing with it frequently). Did they explain that you'll "meet resistance" when pushing the thin tube into your urethra, but that you are to carefully push past it, that it's the sphincter you've reached and you need to get past it in order to reach the bladder cavity to empty? That is one signficant aspect that I really think you should have been shown first-hand as it is somewhat 'delicate'. I don't remember all the details, but I believe I swabbed with a special wipe before using the tubes and that it was important to measure your output (input, too, actually). Did they give you a "hat" to set in the toilet to void into when you self-cath and also when you go 'regular', so you can track your input/output? I kept mine in a plastic bag to carry with me when I was away from home as it was really important to be accurate with the measurements. I know it can get depressing and I'm really sorry. I still do not fully void, but it's not signficant anymore and I just don't need to self-cath. I have additional bladder issues now due to my cervical spine damage, not the nerve damage from my rupture -so I've been back at the Urogynecologists (better than a regular Urologist, in my opinion) for about a year now (that's why I popped into this board). I feel for you! I'll check this thread to see how you're doing or if you have anymore questions. Take care!
    Meghan

     
    Old 03-12-2009, 03:19 PM   #11
    Kertie446
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    Re: Self-catheterising

    Hi, Meghan and thanks for your reply. I appreciate it a lot and found you very helpful and supportive.

    I think I too know you from there. Nice to hear from you again.

    They (urogynaecologist and his registrar) do wonder if my bladder retention is caused by my lower spine degeneration, though, oddly enough, all of the spine surgeons I went to see didn't really bother about it when I brought it up into the conversation and kind of ignored it and went onto something else.

    Wow, you actually had a model to practice on? That's good. They didn't bother with me like that. They just said to go home with an instruction booklet which I do understand and just do it myself without first watching me to see if I can actually perform the catheterisation on myself before letting me go home. I did actually think that they would show me physically how to do it but they didn't. I am now seeing my practice nurse instead of the continence nurse as I feel more confident in her than the continence nurse and she also knows me which I feel helps. My practice nurse was gentle and sympathetic while doing the cathing and also thought it was strange that the continence nurse didn't first make sure I could do it myself before actually letting me go home. My practice nurse is seeing me again to try and help me to learn how to do it.

    I feel so silly as apparently it's easy and doesn't hurt but I found it stingy and also gave a pressure like feeling as she put it up into my bladder. I don't like the stinging and pressure sensation as it's quite uncomfortable. The continence nurse and specialist said it wouldn't hurt, only be uncomfortable but I find cathing hurts me in a stingy like way. I don't know if it's because my urethra is very sensative or if that's how catheters are supposed to feel when being passed up into the bladder. I think I'm going to ask for some numbing cream but the continence nurse at first said I didn't need it as it wouldn't hurt but I knew I'd need it and I was right but she says now that she can't prescribe it and to ask my practice nurse or GP to prescribe it!

    I have been told that I may need to self cath for about 8 weeks and then be followed up to see how it is going and if it doesn't work to try something else and at the moment I'm to do it once every night before bed to stop me from having to get up to keep going to the toilet. Have you found that when you self cath before bed that you don't need to get up to go to the toilet? I'm just wondering as bedtime is when I have the most trouble as I get up about 3-6 times a night.

    The other thing I'm concerned about is the UTIs as I've already had two without cathing due to my chronic retention leaving stagnant urine in the bladder resulting in growth of bacteria - I had a staph B infection first then an e-coli infection. Oddly enough, two different strains. The thing I'm worried about is the fact that when I had oral antibiotics before they made me get severe stomache pain, diarhoea and now I've got it on a chronic basis as a result of having to take these antibiotics and my doctor didn't tell me when it would go better. I've had this chronic soft stools which I do every other day since the beginning of September last year when my bladder problem occurred and hasn't settled since. It's as if this soft stool thing is somehow connected to my bladder problem too? Is it possible I may have something going on in my abdominal cavity that could be making my bladder like it is even though I've had an ultrasound and they've said it's normal? Is there anything an ultrasound may miss?

    I'm thinking of not taking any oral antibiotics and refusing them if my GP tells me to have them as they are just making me get other problems. Is there any other ways of taking antibiotics that doesn't directly give me stomache problems?

    I don't remember being told that I'd meet resistence while inserting it. I've read that I may meet resistance but am not sure what that would feel like? What do I do if I meet resistance? Do I just carry on inserting it or stop until I don't feel the resistance? They never showed me anything at all physically so that is why I'm quite worried and concerned about doing it on my own as I'm scared I'll hurt myself or do severe damage to my urethra.

    I'm doing the self cathing on the bed at the moment and have got a collection bag and a measuring jug to measure the output onto an output chart.

    Do you get symptoms of frequency and abdominal pressure/urge feeling like you still need to go? These are the symptoms that I'm currently suffering from which is what makes me get up to go at night a lot as it is just so uncomfortable I can't ignore it.

    I too see a urogynaecologist but I don't always get to see the actual urogynaecologist. Sometimes I may get lucky and get to see him but usually it's a member of his team instead.

    I feel for you too and hope that your symptoms improve and get better as I've been told by my specialist that it does recover if you cath it and eventually it gets to a point where we don't have to do it anymore.

    It does get depressing as I'm 20 and want to go to work but can't even manage daily life due to severe fatigue from lack of sleep. I don't know what to do.

    I wish to thank you for your support and sharing your experience as it helps me to understand better the condition that I've got and to know that I'm not alone and that there are kind people like you out there who are there to support me and lend a listening ear and advice. I appreciate it a lot.

    Many thanks and kind regards.

    Niad

     
    Old 03-14-2009, 05:47 PM   #12
    Wymom94
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    Re: Self-catheterising

    Hi Niad, I'm glad you remembered me and even more pleased that I was of some help. )

    <They (urogynaecologist and his registrar) do wonder if my bladder retention is caused by my lower spine degeneration, though, oddly enough, all of the spine surgeons I went to see didn't really bother about it when I brought it up into the conversation and kind of ignored it and went onto something else.>

    If I recall correctly, you had trouble with the spine docs. I think that or the physiotherapist is why you originally posted when I "met" you. I'm sorry, and not surprised given the trouble you had, that these docs didn't listen to you about your bladder problems. You don't have any cervical problems that might relate to the bladder do you, strictly lumbar?

    <Wow, you actually had a model to practice on? That's good. >

    Lol,it was actually kind of embarrassing for me and a bit weird, but definitely helpful and preferrable to starting on myself first (even w/ help) or with written instruction only.

    <My practice nurse was gentle and sympathetic while doing the cathing and also thought it was strange that the continence nurse didn't first make sure I could do it myself before actually letting me go home. My practice nurse is seeing me again to try and help me to learn how to do it.
    >

    This is really good to hear. I don't know what the other nurse was thinking, not showing you and making sure you physically knew what you were doing -first-hand. It's not something you want to make a mistake with, nor an area you want to cause injury to from doing it wrong. This new nurse sounds much better.

    <I feel so silly as apparently it's easy and doesn't hurt but I found it stingy and also gave a pressure like feeling as she put it up into my bladder. I don't like the stinging and pressure sensation as it's quite uncomfortable. The continence nurse and specialist said it wouldn't hurt, only be uncomfortable but I find cathing hurts me in a stingy like way. I don't know if it's because my urethra is very sensative or if that's how catheters are supposed to feel when being passed up into the bladder. I think I'm going to ask for some numbing cream but the continence nurse at first said I didn't need it as it wouldn't hurt but I knew I'd need it and I was right but she says now that she can't prescribe it and to ask my practice nurse or GP to prescribe it!>

    There's a med (not cream, pill) that can completely numb the bladder and ureters, but it also works for bladder urgency, which is not your bladder issue. I don't know what it would do to your difficulty voiding if you took it to numb the pressure and stinging feeling when you cath. It WOULD numb you, but might make it harder to go, which would NOT be good, of course. Ask the nurse and doc if it would work negatively for you or if it would only help you (by numbing). It's called pyridium (turns your urine orange, just so you know). You've probably been given if after some appts or procedures with your urogynecologist. My doc offers it after all procedures, to give his patients a 'break'. Self-cathing, though, is different b/c you do it so often. I just thought I'd mention it, in case there's any chance it may help, even once (like if you have to attend a big event that you want a 'break' during). Otherwise, that cream may help.
    As for how the cath feels being passed into the bladder, I didn't care for it, but got use to most of it over time. For me, it was pushing past the sphincter when it gives resistance -that's what felt most uncomfortable. The rest didn't feel good and was an odd feeling, but it didnt hurt. I did feel the pressure like you do.

    <I have been told that I may need to self cath for about 8 weeks and then be followed up to see how it is going and if it doesn't work to try something else and at the moment I'm to do it once every night before bed to stop me from having to get up to keep going to the toilet. Have you found that when you self cath before bed that you don't need to get up to go to the toilet? I'm just wondering as bedtime is when I have the most trouble as I get up about 3-6 times a night.
    >
    I always got up at night to go & cath after, but not as many as six times, probably 2-3 (I don't remember exactly, sorry). I would have accidents (minor ones usually) if I waited too long to go or didn't void the extra after I went, so I always got up to make sure. I really hated that part, did not help my sleep, but I tried to take daytime naps when I could and get to bed at a better hour than I normally did (or sleep later). I did start decreasing signficantly my caffeine intake and anything diuretic and I tried to drink less (of anything) after 8pm and more during the daytie hours instead. That helped, but was not my usual way of doing things. I'm pretty sure I was able to get away w/ once a night to twice with that change. I'm sorry I don't have my old notes that I kept while going through it all.

    <The other thing I'm concerned about is the UTIs as I've already had two without cathing due to my chronic retention leaving stagnant urine in the bladder resulting in growth of bacteria - I had a staph B infection first then an e-coli infection. Oddly enough, two different strains. The thing I'm worried about is the fact that when I had oral antibiotics before they made me get severe stomache pain, diarhoea and now I've got it on a chronic basis as a result of having to take these antibiotics and my doctor didn't tell me when it would go better. I've had this chronic soft stools which I do every other day since the beginning of September last year when my bladder problem occurred and hasn't settled since. It's as if this soft stool thing is somehow connected to my bladder problem too? Is it possible I may have something going on in my abdominal cavity that could be making my bladder like it is even though I've had an ultrasound and they've said it's normal? Is there anything an ultrasound may miss?>

    Well, I'd not use the same antibiotic or class of antibiotics again if you can avoid it, for one. (Sorry about this problem, btw). Do you have endometriosis? I know it can cause bowel and bladder problems depending on where it 'deposits' and how large those deposits get. That might explain the soft stools and somehow connect to the trouble voiding in full, too -I'm not sure though, just guessing. I'd ask your doc about it as a possibility. I'd ask to see GI, too, if you can, if you are still living with a bowel change. Any change in bowel habits for a stretch of time, should definitely be checked out.

    <I'm thinking of not taking any oral antibiotics and refusing them if my GP tells me to have them as they are just making me get other problems. Is there any other ways of taking antibiotics that doesn't directly give me stomache problems?
    >
    As for those UTI's, sorry about that. I remember getting frequent infections and just having to take care of them as they came. That, too, was no fun. Definitely, though, ask for a different antibiotic next time or a completely different class of antibiotics if that is possible. There are IV antibiotics and injections, maybe there is a liquid form that can be taken from home, too, non-pill. There must be, actually, b/c I'm fairly sure I gave my son liquid antibiotics when he was a wee fellow. Maybe just having a liquid instead of pill form --again, though, a different antibiotic alltogether still, may help? What antibiotic, btw, have you been given that's caused the problems?

    <I don't remember being told that I'd meet resistence while inserting it. I've read that I may meet resistance but am not sure what that would feel like? What do I do if I meet resistance? Do I just carry on inserting it or stop until I don't feel the resistance? They never showed me anything at all physically so that is why I'm quite worried and concerned about doing it on my own as I'm scared I'll hurt myself or do severe damage to my urethra.>

    You should have felt it if you were going to, so maybe your sphincter is a little more 'open' than mine to letting the cath in, doesn't 'push back' at you. That 'push back' feel is what it's like, unless that's the pressure feeling you get at a certain point during insertion. It's kind of like a milder version of being a virgin and having your hymen intact or partially intact, you meet resistance and have to push past it -but it's the sphincter muscle leading into the bladder at the end of the ureter. And, yes, you carry on, that's why they explained it to me, so I'd know not to stop at that point, since I'm not even 'there' yet. I was told to just push past it (a small bit) and there I'd be, in the bladder. Definitely ask your (nice) nurse about this before practicing, of course. Obviously, though, if you are peeing out through your cath tube, you've reached your bladder.

    <I'm doing the self cathing on the bed at the moment and have got a collection bag and a measuring jug to measure the output onto an output chart.>

    Hmm, so you aren't asked to measure what you go "on your own" first and then also measure your cath output or you measure differently to access your 'on your own' portion in the bathroom and then self cath measure on the bed for output? If you want, ask if you can have a "hat", you might prefer it. You lift the 'man lid' on the toilet (the part you'd normally sit on) and place the hat on the actual toilet bowl, then lower the 'man lid' (lol), sit, and go. The measurements are inside the 'hat' so you just look and see what the total is, mark it, dump the pee and flush, then replace the hat or set it on the toilet floor to cath into it to measure how much was left in AFTER you went on your on. Then you have to wash the hat, of course in the bathroom sink. If this sounds like more than what you do now, just ignore the option, but if you don't want to measure from your bed, it's an option/idea.

    <Do you get symptoms of frequency and abdominal pressure/urge feeling like you still need to go? These are the symptoms that I'm currently suffering from which is what makes me get up to go at night a lot as it is just so uncomfortable I can't ignore it.
    >

    yes and no. I had an additional problem that, thankfully, you do not. I had some nerves to my bladder severed so I didn't get the signal from bladder to brain that I 'had to go'. I would get a feeling of pressure in my abdomen that hurt and THAT was my signal to go (soon b/c it meant I was distended or near it). However, some aspects of the cath process and some meds (and excessive caffeine intake would make me "feel" like I had to go. It wasn't the same, but similar to what you feel as 'urgency'. The abdominal pressure/urge I got big-time. There is also a med that helps with this, but I don't advise it. It is meant specifically for urinary retention problems. I was put on it for months by one doc, then when I switched to a new doc, he was stunned I'd been put on it b/c it can cause more of the problem you're trying to treat -more difficulty in voiding on your own even though it's suppose to be for urinary retention issues. I was never clear as to how or why and was already off the med by the time I was w/ new doc (so it was no longer an issue) and I don't remember details so well, so I'd ask your doctor about it in case 2nd doc of mine was not the one to listen to after all. It's called Bethanechol Chloride. Aside from asking about this, I'd definitely do the avoiding diuretics of all kinds as much as possible to help some with this problem. It won't fix it, but it should help to cleanse your body of things that will make you want to go more. Otherwise, maybe that numbing pill or cream?

    < feel for you too and hope that your symptoms improve and get better as I've been told by my specialist that it does recover if you cath it and eventually it gets to a point where we don't have to do it anymore.>

    Oh, Niad, my worst was almost 11 years ago now, 11 years this July -long time ago. It was really bad for me the first 7 months, then 'just bad' the first 2 years, then so, so much better these past, almost, 9 years --but remember my problems were due to damage directly to my bladder and bladder nerves from a uterine rupture, not the same cause as yours at all (so don't worry and think you'll be the same, you won't). I have had 'episodes' or stretches of time where it is worse again, but there's always a reason. Once, it was because of a nighttime cold & flu medication I was taking for 2 weeks, a component of the med was triggering my problems anew, as if they'd started at their worst again. Another time, it was excessive caffeine consumption for a month that was making it worse for me again. That might still be something good for to watch even though our causes are different -watch the triggers that can make it 'spike' in trouble again. As for me, when I started having NEW and different bladder symptoms about 5 years ago, I assumed it was from my original bladder damage from the rupture and didn't seek help for 3 years. Then, I put off my referral back to my urogyno when I did seek help, for another year. The new problem was totally unrelated and was due to my cervical spine damage that was diagnosed last year and now looks to be permanent b/c I waited so long. My urogyno would have probably caught the cervical spine connection if I'd gone in earlier. sigh. Your situation sounds like it will be resolved much more timely and permanently and I'm glad for that.

    <It does get depressing as I'm 20 and want to go to work but can't even manage daily life due to severe fatigue from lack of sleep. I don't know what to do.>

    I had no idea you were so young! And, with your spinal problems, too, Niad! That's just not fair. I'm really sorry. I was 29 when my bladder problems showed up after the birth/death of my 2nd/youngest child (39 now, almost 40--omg, I could be your mother, lol). My son is 14 and has a lot of health problems, tough ones, too. I can understand the frustration, depression, even anger over having to deal with such things when you're suppose to be experiencing a very different daily life. Your youth may really be on your side, though -you should be a faster healer -and I hope you are. Please post again so I can see how you do. I will keep you in my thoughts and prayers for the best outcome --as soon as possible.

    <I wish to thank you for your support and sharing your experience as it helps me to understand better the condition that I've got and to know that I'm not alone and that there are kind people like you out there who are there to support me and lend a listening ear and advice. I appreciate it a lot.>

    I was born to listen, have kind of large ears. ) And, I'm always happy to be of any help I can, have received help from others and love to "pay it forward" whenever I can. I'm not shy either and am fine to discuss 'bodily function' issues, as you can well tell.
    Take care and God bless,
    Meghan/wymom

     
    Old 03-14-2009, 05:49 PM   #13
    Wymom94
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    Re: Self-catheterising

    Grrr, my smiley faces turned into sleepy faces --they were suppose to be smileys, just so you know.
    -Meghan (smiling, not sleeping or yawning)

     
    Old 03-15-2009, 09:57 AM   #14
    Kertie446
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    Re: Self-catheterising

    Hi, Meghan and thanks for your post.

    I had an MRI of my thoracic and cervical spines in early January but do not know the results still and am still waiting to see a spine surgeon as the one I was seeing left me without telling me so I am not sure if I will ever really know the results as they told me that I could be waiting forever as they had a huge backlog of a hundred or so patients that that spine surgeon was once caring for but has now left behind.

    I would have certainly have preferred to practice on a model first before actually doing it on myself as I am just not confident or happy about it at all.

    I do not know what that other so-called continence nurse was thinking either and that is why I decided I did not want to see her again as I did not think she was any help or even competent to do it and that my practice nurse at least tries rather than just telling me to go and guess how to do it. I am scared of doing much more harm than good and know this happens to people that do not have the correct care because they too probably be put under the care of these so-called continence nurses that are supposed to show you how to do it properly instead of just sending people away to guess at their own peril. It just does not make sense why they are called continence nurses as they do not do that anyway.

    I have heard of a cream that can be applied like a local anaesthetic gel or lubricant that makes it a little more bearable at least. I have heard of pyridium but have never even been offered any kind of numbing, just told that "it will not hurt. You will be fine." I do not know how many times I have been told this by so many so-called health professionals, including this continence nurse but I now never bother listening to them as I just do not trust them as they keep telling me that and when they do it it does hurt! Your doctor sounds so much better than mine. Mine just tell me that I do not need numbing stuff and that it will not hurt and to get on with it!

    Just would like to ask this - my urogynaecologist did not internally examine me, only outside. Do urogynaecologists actually internally examine or only externally as he never did anything, except look at me externally?

    Does it sting and feel like pressure when you push past the sphincter as I felt this sort of sensation when the practice nurse was doing it and wondered if that was the sort of sensation that it felt like when pushing past the sphincter. What sort of sensation or pain does it feel like when pushing past the sphincter? Is it more like a stinging sensation?

    It does seem like perhaps this self cathing is not really the appropriate treatment for me as if it does not give me all night to sleep than really perhaps I should ask to have a proper catheter put on as I would at least get some proper sleep. I just cannot really be bothered to keep getting up just to cath myself as really I would like a good sleep. I too have avoided caffeine and have tried to cut down generally on fluids as I have found it makes it worse for me.

    I am not sure if I have endometriosis but have considered I may have it as my mom's sister had it and also apparently the spine surgeon said there is nothing wrong with my back apart from some degeneration and have heard that endometriosis does cause back pain like I get and also sciatica like I also am getting, particularly when I am on my period and it gets so severe that I just am woken up by it and cannot get back to sleep. I would like it investigated just in case as it could well be endometriosis. I too have heard it can cause bladder and bowel problems which does sound like my problem. I have thought about seeing a GI and will ask about it if my urogynaecologist does tests for endometriosis and does not find it.

    I have read that any antibiotic that does not enter the stomache itself should be ok and not cause as many problems as oral antibiotics. I was given the antibiotic called MacroBid Nitrofurantoin.

    I have not tried to cath myself yet as I am still not confident in doing it and am scared of doing it because it hurts me. I kind of felt the resistance, I think, when the practice nurse did it which is when my mother said that she heard the catheter make a gurgling sound as if like a plug as she describes it. The practice nurse has booked me in to see her again and will do it on a full bladder to then see if it is in the right place. I would think after showing my mother where it goes, she will also show me how to do it and perhaps have me practice in front of her. Though my practice nurse did actually say that to begin with, my mother could maybe do it for me rather than me just do it all on my own as she thought it was a bit much to do just on my own which I totally agree with. My mother does not seem to want to help me with this though. She said I have got to do it on my own which to me feels like I am on my own with this and I do not think I will manage it without the support.

    I have been told to measure the output that I do when I go on my own and then also the output from when I cath. I think I would prefer a "hat" to put on the toilet to first measure the output that I do when I go on my own and then measure the output I cath in a jug on my bed. Though I do have a collection bag on the end to make sure it does not go all over the bed.

    I found that after the practice nurse had done the cathing, I had a bit of soreness after and also felt like I had to go but it wore off after a day. I was given a medication called Vesicare (Sollifenacin Succinate) which was given to me before my problem was actually diagnosed! Apparently because I had retention I should not have taken this as it warns on the leaflet that it should not be taken if you have retention. I did find that while taking this medication that when I went I could not release it so I decided myself to stop taking them as it made me kind of unable to go even though I still had the urges/full bladder feeling. I will talk to my urogynaecologist about the retention pill and see what he says. When I spoke to his colleague registrar he said that he could not give me any pills or medication as it would make my situation worse and the only main simple first line solution was to self cath or try an electronic stimulator that they implant into you or other options which he would not discuss there and then. I drink mostly water and milk and other similar things. I will ask for the numbing cream that is applied externally as it will probably have less side effects than oral.

    I have read that sometimes the ingredients in the cold and flu remedies can make bladder problems worse or start them anew. I have also heard that antihistamines can too. I used to take a migrain prevention tablet called Sanomigran (Pizotifen) which contained antihistamine and often wonder if that had something to do wih it so came off them and my symptoms are still the same.

    I have read that if spine issues are left for more than a few months the damage to the nerves can be permanent which is why I am worried about mine too as I have remained waiting to actually get some answer for 3 years and a half now for my spine but still do not have an answer that I actually trust. I am extremely dissappointed in that spine surgeon that left as he did not even bother to note it and shrugged it off even though I have read that a back problem and bladder problem together is a red flag warning and is a medical emergency. He could not be bothered to even tell me why I had it which I think in my opinion is appalling which is probably why he left. I am not exactly confident this problem will be resolved more quicker or permanently as he (urogynaecologist registrar) is not sure on the exact cause and has admitted that. I, in my opinion, think I need more tests to diagnose the exact cause rather than like they have where they have literally guessed after one test and prescribed a treatment which may or may not work. They are only trialling it on me. Though because I am not getting the appropriate care and support from all these people I do not think I will do very well and feel it should not be me that has to treat myself as I do not see the point in that if they are the ones that are supposed to be looking after me. I am not a doctor or a nurse. I do not know how to perform clinical procedures such as cathing and refuse to do so unless adequetly trained professionally. They are the ones that should be helping me to get better, not sending me away to treat myself. That is one of the most dangerous things they could ask!

    I did not find that any of the medical people I saw seemed very sympathetic though. The only sympathetic medical person I have seen was the practice nurse. Perhaps this is because they have to be? I really do not know. I much prefer her to any of the others I have seen.

    I cannot do the things I used to when I was younger due to my bladder problem and this does get me down and does certainly depress me a lot at times but I just keep it in as there is nothing I can do about it. Sorry to hear about your son's health problems.

    It feels better just to have someone that is there when you need to ask something or want to talk about it in general.

    I thank you once again for your support.

    Many thanks

    P.S: I think them smileys must have somehow got a glitch!

    Kind regards

    Niad

     
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