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Thread: Yesterday's Appointment with Urodynamics....

  1. #1

    Default Yesterday's Appointment with Urodynamics....

    I shall start with my history...

    In 1999-2000, I developed stress incontinence after giving birth to my Daughter, a physiotherapist who specialised in the pelvic floor area was sent out to me, and I saw her every week for about 8 months, and then was discharged as I was "cured".

    In 2007, after falling seriously ill by some undiagnosed condition, (dx in 2010 and 2012 with my two "main" conditions) I started to become urge AND stress incontinent.

    I was prescribed large pads (I have always called them nappies) and referred to Mr Elmardi, in urodynamics...

    In 2011 my incontinence got so bad I was wetting myself frequently. I was given Vesicare 5mg for suspected overactive bladder.

    6 months ago, I went to see Patrick, Mr Elmardi's right hand man and he confirmed that I had retention as well as incontinence, (yes, that is possible!) so I should come off the vesicare and start desmopressin to stop me going 6+ times a night.

    Now my current circumstances are that my incontinence and retention have got far worse.


    I CANNOT go for a pee unless my bladder is full to bursting, my bladder doesn't tell me I need to go until it is fit to bursting either! I cannot walk unaided and even then I am VERY slow AND I have to use my stairlift, because it takes SO LONG to get to the toilet, I wet myself on the way, EVERY time.


    I do not have the sensation in my colon that tells me I need to poop, the only warning I get is severe abdominal cramps, IF I ignore those for too long, OR I can't get there in time, I soil myself.

    I saw Patrick first yesterday, and when I had finished telling him my problems, he said that he wanted Mr Elmardi to see me, because he didn't know what else to do.

    Mr Elmardi said he wishes me to have a VDU urodynamics test, which is only available in Shrewsbury, 41 miles away, or thankfully New Cross which is 11 miles away. He is going to try and get me in as an emergency as he really needs to know how much of my problem is neurological, and if it can be "fixed". He also suggested a surgical procedure, to implant a kind of "pacemaker" that stimulates the sacral nerve, read about it here, if you haven't already heard of it, which, (if my condition IS neurological) COULD cure, or greatly assist, my dual incontinence.

    For a short term, and almost instant fix for my urinary incontinence, I have been asked to consider "Femsoft" which, in layman's terms, is a "bladder plug",]click here for their website.[/url] I am due to see the clinic nurse at some point next week to learn more about it and how to fit it. Obviously I will not be able to fit it myself, but Si is willing to fit them each time for me. (bless him, I am really lucky to have him as my FiancÚ (&Carer) he does EVERYTHING and ANYTHING for me, without a murmur of complaint or displeasure)

    He also wants to get me in urgently to his joint incontinence clinic, so that his team can start to see me regarding fecal incontinence, as I have not actually seen anyone about that either....

    So, that is where I am at right now, a rather scary, but optimistic future lies ahead! :-)

    Wish me luck for my incontinence nurse appointment next week.

    Love and hugs

    CV x

    Sent from my Nexus 7 using Tapatalk 2

  2. #2



    I had very similar bladder problems to what you have described. I'm not a woman but as this is a very rare problem (retention & incontinence) I hope that my experience can be of some help to you. Give it a read, it won't do any harm.

    I'm 34 now, but from my mid-20's I suffered from a worsening problem of both retention and incontinence.

    In 2009 after endless urodynamics tests and Cystoscopies I was referred to a brilliant urologist at Oxford Churchill hospital called John Raynard. He specialises in SCI (Spinal Cord Injury) urology and neuropathic injury.

    By this time I was retaining circa 1300 mls of urine with incontinence. The only way I could describe it would be to ask you to think of a pressure-valve, only releasing small amounts every now and then. I was in agony, it felt like I had bricks in my bladder - it was constantly bursting. I could sleep no more than an hour or so each night, my marriage ended as my wife couldn't cope with me and by 2010 I was a mental and physical wreck. I don't know at what point you would call it a breakdown but I had lost everything through this problem and it would not ease up, even for a minute. The only thing that kept me from suicide was my daughter.

    It was understood that both my Bladder Neck and the External Urethral Sphincter muscle were in rigid spasm, locked tightly closed. After maybe 10+ failed attempts to control the sphincter muscle with Botox it was finally decided to repeat the Bladder Neck Incision and to cut the sphincter with an operation called an External Urethral Sphincterotomy.

    This operation is only ever carried out on Spinal Cord patients, not people still walking around on two legs. After more referrals to some big urologists such as Claire Fowler at UCL and a Professor Harrison at Pinderfields, Wakefield, the go-ahead was finally given for the operations in March and May 2012.

    Whilst I have had major complications with Urosepsis on three occasions since March, I have to say that these operations carried out by John Raynard saved my life.

    With the Bladder Neck cut deep and with the Sphincter muscle cut, urine can now flow freely without disruption from the bladder. I have no retention but I have to live with life-long incontinence as the Sphincterotomy is a non-reversible operation. Whilst the prospect of incontinence without cure is not a good one to face, I have to say that anything is better than living with that agonising retention.

    The underlying cause of the problem was never identified. Every urologist had his/her own opinion. Possibly it was an undetectable injury to the spinal cord that has worsened with time, a nervous system problem or a complication from a major childhood illness that can effect you for life (Meningococcal Meningitis).

    If it were not for John Raynard who specialises in this operation, I dare not think about what life would be like now. Ethically the operation put him in a very uncomfortable position as he would effectively create an incurable disability (incontinence) in a person with a problem that may someday be resolved by other means. The reality was that I could not carry on with this problem. Due to urethral damage from previous operations I could not use a catheter and the prospect of wearing a suprapubic for the rest of my life was not acceptable to me.

    The lesson I learned, and please be aware of this....... If you don't like the options being presented to you by YOUR urologist, seek a second, third or fourth opinion and go for the treatment option that best suits you and your future. All options may be undesirable but you would be amazed at how different urologists are from each other and how their approach and treatment options can vary.

    I hope this was of some help because as I said, incontinence and retention together is a very rare problem and very confusing for those treating us. I am new to this forum but I would be interested to hear how things progress. Please keep me updated.

    Oh... On the positive side, post-op.... Other than getting over three bouts of near-fatal Sepsis, my life is coming back together again. My marriage unfortunately is over however I met a lady on the Urology ward and we are becoming partners, slowly and without immediate commitment but we are getting closer. We never thought we would meet anyone due to continence issues so I guess we are both very lucky. The depression problems I had have lifted and life is definitely getting back on track. I have my regrets, the problem caused collateral damage but I was lucky to have gotten through it.

    Best wishes, please keep us updated.
    Paul x

  3. #3


    One thing I do know about stuff like pacemaker device the battery life is only 5 years give or take a year. Expect Surgery every few years for the rest of your life. To replace the device. I have a friend that work installing or replacing Pacemaker devices. It why I told my Neurologist no thank you. I would have to deal with 15 surgeries or more in my lifetime.

  4. #4


    I agree with prichardson about getting more opinions about dealing with your issue if you are unhappy with a doctor's opinion; after all, it is just his OPINION. I had an issue where I fought with severe testicular pain that was so bad I had trouble walking. After multiple failed attempts at nerve blocks, even the pain specialist recommended removal of my testicles over other pain control surgery. The urologist I was seeing refused to even consider it. I had to get sent to a top hospital where the doctor there recognized that my pain and the impact it currently had on my life outweighed the fact that one day they might be able to overcome the issue.

  5. #5


    Good luck, Captain. I hope you get some answers soon. I'm glad to hear that things are moving for you at last.

  6. #6


    Opinion and why it's called "practicing medicine" instead of "perfected medicine" but I can understand why they are very concerned from what you described. One thing I've noticed is when you have really good insurance vs not good ins - they don't 'prescribe' as many tests that aren't really necessary. I've had some docs that made it really obvious that's all they were interested in and left them cold for another one.

    I wouldn't think that's what you are having go on but something to keep an eye out for. Also, I would research any 'product' they want to offer as much as possible. Find out the 'cons' and don't be shy to ask about them and alternatives. *Many docs get kickbacks from the companies for prescribing one thing over something else that is proven to be more effective. You can't just blindly trust them.

    When all is said and done, they are (most of them anyway) are more interested in bonus checks and who they're playing golf with when they are done with you. If you find a really good doc that cares... stay with them! They are rare... take the time to feel them out too. It can save you some serious complications from them just being 'routine'. I can speak first hand about that.

  7. #7

    Default Re: Yesterday's Appointment with Urodynamics....

    I saw the incontinence nurse and unfortunately she has decided that Femsoft is not for me, as it is only meant for stress incontinence... I did wonder when I read the information about it being for stress incontinence, whether it would indeed be suitable for myself.

    In February I have my urodynamics VDU appointment in New Cross Hospital, Wolves, she wants to wait for the results of that prior to treating me.

    However, she did suggest that "self catheterisation" is the way to go, only it would be Simon doing it for me, so she suggested using the catheter bag instead of just the tube, to avoid infection from Simon doing it for me and not myself. She didn't want me doing it until I had the VDU urodynamics test though, so they know exactly what they are dealing with.

    I'm just waiting to have the test done now, and the joint incontinence clinic appointment to deal with my fecal incontinence...

    Here's hoping the new year brings new and positive things towards my incontinence!

    Sent from my GT-I9300 using Tapatalk 2

  8. #8

    Default Re: Yesterday's Appointment with Urodynamics....

    It is taking them till february too get you in? I thought your dr was doing out as an emergency? If that is the case, how long is it for a non-emergency?

    If I were to guess, your country has a national health system. There is no reason one should have too wait that long for a diagnostic test.

    Sent from my SCH-I800 using Tapatalk 2

  9. #9


    The timescale seems a bit like that one would expect when there is a "routine" incontinence issue without the complications described above. Would it be worth talking to your GP and/or IC nurse to see if there has been a urgent request made to the hospital? This would seem to be justified because of the pain and the complication of fecal incontinence - however - there is a chance the catheterization will be a good enough interim measure to enable you to cope reasonably comfortably until the test can be carried out - so it might be worth waiting just a little while so that if the self catheterization is ineffective you will be able to say so on the basis of a fair trial.

  10. #10


    kitsiulla, you are sooo right. i looked at an "explanation of benefits" my health insurance company sent me. the hospital tried to charge a total of $1800 for services one day, and my insurance paid them $225. i figure doctors are unofficially requested to do expensive tests only for those with expensive insurance. or those with no insurance, so the hospital can badger them until they pay cash. :-( it's enough to make someone want to move to canada!
    Last edited by whisko; 13-Dec-2012 at 16:36. Reason: confusing

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