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Any guys have hydrodistention and did it work?

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  • So Frustrated
    replied
    Rope, I really appreciate your feedback. It is helpful to know I am not the only one suffering with this. It sucks for all of us, but it does help a little knowing we have others to discuss it with and hopefully find more answers and maybe one day a solution.

    I may take you up on the private message offer when I have some more time (at work now). My urologist is supposedly one of the best around according to various patients, but that means nothing if he's not the best for me. I am going back in a few weeks and if I don't feel I'm getting what I need, I will definitely be moving on.

    I'm thinking of traveling to one of the better known IC specialists I've heard about at some point. There's got to be something out there to give me more relief.

    Thanks again.

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  • Rope_Wrench
    replied
    Not alone

    Hello So,

    I know where you are coming from oh so well. I am 37 and after doing the entire work up thing like you, they finally said IC (which was the first time I had ever heard of it). My prostate was just "slightly enlarged" and they felt it was not the cause of my freq. and urgency. I too had the weak stream and even some post void dribbling. What made them think it was not my prostate was the fact I was not retaining much after going. They changed my meds and it was not till I found myself with the urge to go about every 20 minutes and not getting much if any out that I went back in thinking I was locked up and I needed a cath (in hind sight I think it was a flair). They did the cath and found the normal amount for a post void. Just after they did the cath I had another strong urge to go and that was when they got clued in on IC. I had the cysto w/ hydro and that was when they found out what I had. Now my freq was going on for well over a year before I was seen so other then your six month window, we sound the same.
    As far as bladder capacity, mine is low as well. I think mine is from going so much for so long that it just will not hold a lot anymore. As far as the stream, I feel it is due to such a low volume in the bladder and there is just not enough there to force out like when we were younger. I get aggravated sometimes with myself because my 4 y/o son can pee farther and longer then I can.
    I am not on Elmiron but I think you will need to stay on it for a few months before you will see anything from it. I am on VESIcare, atarax and UroXatrol and they seem to be helping. I will go back in December and plan on seeing about changing things a little. The biggest advice I can give it the diet. I will be hounest, it sucks at first but if you can stick with it for awhile you should see some improvement. Then every now and then try out one of the things you cut out and see what it dose.
    You can give the hydro a try and it will give your uro a better idea if IC is what you have. My first cysto came back normal and he just treated me for overactive bladder till I had that flair up. Then they did the hydro and could see the damage to my bladder wall lining. That was when they told me "IC".

    If it is IC you have, I am sorry to tell you that your "old life" is done. Now don't get me wrong, its not the end of the world. I was told about my IC this past June and I am still going through my issues. I hate the changes I have had to make but if I step out and look at the big picture I can see it is not as bad as I feel sometimes. Somethings have got a lot better for me for example, before I was getting up about 5 times a night to pee. I am now back to sleeping through most nights again.
    As far as if the hydro hepled me or not, not real sure. The freq went through the roof for the first few days after but it did get better. Has it helped in the long run? As of now, I would say no but it did not make things any worse. I am glad I did it because thats when I found out what I had.
    The only other advice I can offer right now is if you are not happy with you current doctor, find a new one. Remember he works for you. If you don't like the job he is doing, fire him and find a new one.
    Good luck and keep us posted. Also if you want to send me a private message, feel free. I am on here every day.
    Last edited by Rope_Wrench; 09-27-2011, 12:23 PM.

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  • Any guys have hydrodistention and did it work?

    My urologist has yet to diagnose me with IC after numerous tests, questions, symptoms, etc. I'm 38 years old with a "normal" sized prostate. About 6 months ago, out of pretty much nowhere, I started experiencing frequency, urgency, pressure, discomfort/pain. I've also had a weak stream and hesitancy since this started.

    I do recall possibly going more frequently than normal before all this, but it never really bothered me much to investigate. I was able to sleep and relax comfortably and go about my life without it interfering much. That all changed one day about 6 months ago without any specific cause.

    So after trying just about every med and treatment out there for IC, I've seen very little improvement. I'll admit there has been some, but my bladder capacity is still quite low. I can't have more than about 100 cc of urine in it without feeling a need to go. When I do go, my stream is still very weak and stop and start. Once I finish, I get relief until I'm back to the 100 cc mark, sometimes less.

    I'm on my 3rd month of Elmiron now. I've had a cystoscopy done, urodynamics, tried Elavil, rapaflo/flomax, enablex, vesicare, atarax, zoloft, vailum, xanax, pristiq, cipro, vibramycin, physical therapy, hot baths for months, and probably some things I can't recall.

    I want my old life back. I want to be able to hold more than 2 ounces tops of urine before feeling uncomfortable.

    My uro mentioned the possibility of hydrodistention at some point, but I haven't done it yet. I see several posts from women having success with them, but how about men? Any night and day difference? I am thinking of giving it a try, but I'm a little concerned about it causing me more problems. I don't want to get even worse and I know that I probably will temporarily. I just don't want it to make me worse permanently.

    By the way, on my last uro visit, which was a follow up for my urodynamic test, he felt I simply have an overactive bladder and had me go on the Vesicare. I don't think this is the case and haven't seen much improvement.

    I showed him my ultrasound of my prostate from months ago and it had a couple of areas of calcification that weren't noted on the written report of it. I thought this could maybe be the cause. He dismissed this idea. He didn't think there was any way it could be the cause of my symptoms (actually said "that would be too easy"). I don't know. It seems like they could be pinching my urethra since they are close to the middle and giving me the false signals, but he's the one who went to school for so many years to tell me I'm wrong.

    If I knew what I really have going on in detail, I think I would be more patient and less depressed. It's the guessing, probing, and shotgun approach that is driving me mad.

    Thanks for any feedback in advance.
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