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Is surgery my only possible option?

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  • Is surgery my only possible option?

    Hi, first timer here. Not sure where to start so I guess I'll just get on with it.

    Back Story:

    About three years ago I started noticing more frequent urination shortly after graduating high school. I was 18 at the time. Slowly but surely somewhere between 18 and 19 I started having frequent urination. By the time I was 19, I was urinating up to about 20-30 times a day. Fast forward til about a year and a half ago, I spend a weekend at my older brothers house and tend to have what's known as "Shy Bladder" but tried to tough through it. My brother and his family not knowing about the current "problem" noticed right away but never said anything, I guess to be polite. But later in the day after I come back to my parents house I end up in the most excruciating pain and find I can't pass any urine at all? I'm in the most excruciating pain I could imagine to do down there, I finally beg my dad to take me to the ER. This is the first time I had an indwelling catheter put in. The doctor finally comes in after everything and tells me I'm suffering from OAB (Overactive Bladder) and that according to what I told them (due to shy bladder I tend to hold it when out in public and can't urinate because of it...) The doc goes on to tell me how fortunate I am to not have any problems with my kidneys. Some pain meds and antibiotics later I get a follow up with a local urologist.

    The start of my living hell...


    I finally get to find out what's hopefully wrong with me after suffering this "OAB" problem for about a year now, I go in when the doctor calls me in. He stands in the doorway and asks only two questions... One, do you still smoke ciggarettes and if so at about half a pack a day correct? I acknowledge, he then goes on and asks about my past drug use which I admit to him I have used and it's been about two years at that time I had quit doing Methamphetamine. He then exclaims that with those two answers none of this made sense. In his own words he goes "Your too young for these problems, drape your penis over this" (ends up being the damn trashcan...) He proceeds to pull a pair of long scissors out of his pocket as if he was just waiting for the moment. Cuts the ball valve and gives a good yank, then before I could pull my pants back up all the way, he's already out the door and tells me to have a good day?? Nothing. Not an answer one to any question I could have had at the time. I end up being so depressed I didn't seek help for a few months because of how it made me feel that a doctor of all people treated a patient in such a barbaric and inhumane way.

    Time for a new Urologist:


    I get ahold of another uro, I'll make this a lil shorter due to how much space my story is taking up and I doubt anyones going to care to read all of it front to back... This time after multiple failed drug treatments for OAB, he does a urodynamics study to only find out that I can hold a max capacity of only 150CC's. Through two hydrodistentions he comes to the conclusion stretching isn't going to work at all, but tells me even worse news. At 21 years of age now, he tells me that I have the bladder of a 70-80 year old man with lifelong infections that led to scar tissue... Pretty much there's so much scarring that a hydro won't help at all, this was back in November of 2015 I got the news that my bladder is scarred to hell and back. He finally admits to me that the bladder meds are big pharma's way to make money off of patients while there's little that actually works? All this after 3-4 months of taking a barrage of meds... On top of it all, tells me that it may still keep shrinking or getting worse? To the point surgery may be my only option... As of today and the last few weeks I have had tremendous pain and inflammation in my bladder and can't stop urinating every five to ten mins even as I type this up.


    Last few weeks up to now:

    The frequency has almost always been this way for about two years now but the pain and inflammation just started out of nowhere a few weeks back. My lower back occasionally hurts but now it hurts consistently throughout the day and nothing seems to stop the peeing frequency. My question, is surgery possibly my only option to gain any significant storage capacity back? Has anyone been told something similar as to the scar tissue part and having the bladder of an sick elderly person despite being in otherwise good health at such a young age? Appreciate any help given, thanks and hope all are doing well.

  • #2
    Re: Is surgery my only possible option?

    I hope you'll find something here that will help.

    Yes, I have been told that I have a lot of scar tissue in my bladder, and I am among those who are helped by hydrodistention.

    Has anyone talked to you about diet? There's a link in my signature below to diet information. I suggest you start an IC diet today --- some find that single step helps more than any other.

    There's also a link to the American Urology Association Guidelines For Treatment, which may also give you some ideas to pursue with your doctors.

    Even though you have seen two urologists, it still could be a good idea to see a third. I'd hate to see you have your bladder removed if there are other treatment options that could help.

    Have you tried instillations? What medications have you tried? Any other treatments?

    Sending warm healing thoughts,
    Donna
    Stay safe


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    • #3
      Re: Is surgery my only possible option?

      Originally posted by ICNDonna View Post
      I hope you'll find something here that will help.

      Yes, I have been told that I have a lot of scar tissue in my bladder, and I am among those who are helped by hydrodistention.

      Has anyone talked to you about diet? There's a link in my signature below to diet information. I suggest you start an IC diet today --- some find that single step helps more than any other.

      There's also a link to the American Urology Association Guidelines For Treatment, which may also give you some ideas to pursue with your doctors.

      Even though you have seen two urologists, it still could be a good idea to see a third. I'd hate to see you have your bladder removed if there are other treatment options that could help.

      Have you tried instillations? What medications have you tried? Any other treatments?

      Sending warm healing thoughts,
      Donna
      Hi Donna, by instillations do you mean like bladder cocktails? (I think that's what they're referenced as sometimes)

      As to medications, I've taken "Toviaz" in 4mg and 8mg extended release, oxybutynin, Mybetriq, and I believe one other? Oh ya, it was "Flomax" originally prescribed but I never took it due to reading about a certain eye condition that could arise at some point possibly? I believe it was called "Floppy Iris Syndrome" or something like that.

      Edit: Almost missed the first part about diet, yes my current urologist has talked to me about timed voiding along with diet modification in the beginning, have yet to see much difference though through it alone.

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