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Hi, everyone

I have had urodynamics and ultrasound scans of my bladder and am retaining up to 300mls of urine even after going to the toilet.

I have symptoms of frequency and urge feelings.

I have seen a urogynaecologist who is going to do a procedure of urethral dilatation including a cystoscopy under general anaesthetic as he is not sure if I may have a narrow urethra which could be causing the retention. He said he cannot guarantee if this will work and if it doesn't he has suggested treating the retention with drugs.

I am not keen on taking drugs for this problem as last time I took one (anticholinergic) it made the symptoms worse and I ended up not being able to go to the toilet and empty at all until I had stopped them for a day. I have not gone back on them due to this. I have also heard that they seem to have many side effects.

I have heard that there is such a thing as an antidepressent that makes the bladder capacity larger which is one of the drugs he is going to have me try but I feel that this is not the answer as it only does bladder capacity not retention. Also these antidepressents from what I've researched seem to have many side effects too and quite serious ones, such as psychosis, etc. I don't want to end up with something worse than I already have! He also said that he cannot guarantee that any of these drugs will work.

I am very skeptical to be honest due to the fact that I have never seen other people being treated only by drugs for chronic urinary retention or heard many positive things about them. In fact I didn't think urinary retention was something that is treated just by drugs. It is incontinence that I know of that can be treated by drugs.

Have any of you had experience of taking drugs for urinary retention and have they made any difference?

I know that the usual methods are catheterisation or the newer method of the sacral neurostimulator implant.

He is desperately trying to put me off catheterisation and sent me back home without anything to help me get at least a wink's sleep. I am suffering badly due to lack of sleep which isn't helping my day-to-day functioning and is making me very frustrated and emotional due to the fact I feel helpless and so tired every day as I have to wake up 4 to 6 times a night to go to the toilet. I'm trying to study and it is interfering as my brain is just so frazzled. My consultant just doesn't seem to understand just how bad it is right now.

I am considering going to A+E to get a catheter fitted without his permission due to my distress and pain of this chronic retention.

Sorry for the long post. I felt I needed to vent as I feel so alone right now.

Many thanks and kind regards

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Hi there. Thank you for your post and I am sorry that you are having to go through this. I am sure you will find a lot of comfort in others who have been through or are going through a similar situation. I really want to address the why you feel so alone right now? Do you have anyone close to you whom you can open up to or talk to? A support system in any situation is crucial in being able to cope at times. Have you talked to your doctor about the emotional side of what you are dealing with. I am glad you found this forum and am sure you will be able to relate to others who have more information to share. Good luck to you but I do hope you will write back.
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Hi, Brenda. :-)

Thanks for your post.

The reason I feel alone is due to the fact that I feel my consultant does not understand the way I feel and how badly it effects my life. I am still trying desperately to study and my health is taking over and is becoming very troublesome to cope with. I have got people close to me but they prefer to try and keep it out of the conversations anyway. They prefer to (I'm assuming) pretend that I haven't got this problem but the fact is I have and they (and I definitely) cannot escape this fact. I suppose they are a little scared about upsetting me or feel like if they mention it I may get mad as it does result in me getting emotional and angry at times due to the suffering I've been put through just to wait and get help. I am not happy with having had this for 8 months now that they (hospital) still don't really know what it is or how to treat it. I know that chronic retention is potentially fatal as I can develop kidney failure and I don't really want to have to get kidney failure at 21 and am quite scared and concerned about it as my consultant didn't seem bothered about or the fact of my young age to be presenting with this or in trying to preserve my kidneys at least.

I'm too scared to talk to my doctor about the emotional side as they seem to always think people are suffering from mental illness and I have had this so many times that I don't want to share my intimate or emotional concerns with them as I don't feel I could trust them. They will only shove me out with pills. That's what happened on many occasions before.

They have on many occasion told me that it's all in my head for both this bladder problem and spine problem (when clearly they are both not as I had tests that showed physical impairments to both bladder and spine).

Got to go now but I will check back. :-)

Thanks for your support, it's much appreciated at this uncertain time in my life.

Many thanks and kind regards
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Hi there! Glad you wrote back. What about a support system outside of the medical field? If you are not wanting the anti-depressants, etc. that a doctor will shove at you, the best thing to do is maybe some alternative counseling through a church or group in your area. Getting support from unbiased people could benefit you. It is hard to trust at first, but you will find someone if you are open and willing.

Glad you found SteadyHealth. Am sure you will make some friends here and share what you are going through. I will be praying for your success! You can do all things! Stay strong and reach out. People really do care in this crazy world we live in. ;-)
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Hi, Brenda :-)

Thanks for your reply.

I'd just like to say that he is not prescribing them for depression. It's to make my bladder capacity larger. Sorry if I didn't explain more in my original post.

It is my bladder retention they are trying to treat with these drugs as antidepressents apparently are also known to enlarge the bladder capacity.

I just am not keen on taking them due to side effects that are much more serious, such as psychosis, etc and my head is perfectly fine so I don't really want to get a problem with that too. It will just add to the already large list of problems I already have.

I'd rather go for a catheter or the neurostimulator that may help improve voiding. These two treatments I know would have some form of effect in improving what I have as they are well known treatments for this condition.

I may join a bladder group or something like that as they may be able to share their experience on their bladder problems and the treatments and investigations they may have had. Though I cannot find any in my area currently.

Yesterday I saw a neurologist for my spine problem and he noted down my bladder problem too as I also mentioned this to him as it could be related. He did mention Multiple Sclerosis as a possiblity for my spine and bladder symptoms. I mentioned about vitamin B12 deficiency as I do know from other peoples experiences that this could cause all these symptoms I am having. He agreed and sent me for blood tests to check it and also for Lupus as he thinks that could be a possibility as it can cause these symptoms too and I also have the rash that is usually associated with it. He is also referring me for a lumbar puncture to check for Multiple Sclerosis as he said that although I had an MRI of my head, sometimes they do not always show it. My head MRI results were fine and came back normal.

I would like to thank you for your support and help.

Kind regards
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