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Diagnosed with "Fibrotic Bladder"

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  • arkitekton
    replied
    Some Relief

    Hi Miriam,

    I didn't realize this thread was still live.

    I empathize. I also look fairly healthy, and even my primary care doc doesn't really believe how much I struggle (with IC and other things).

    I did get a fair amount of relief by practicing the methods described in the book Healing Pelvic Pain. After a lot of practice I can often turn the pain into a more tolerable pressure, or an unpleasant pressure into a pressure that's easier to tolerate.

    Perhaps the techniques described in the book can help you, as well. I do wish you great luck.

    Best,
    ark

    Leave a comment:


  • MiriamP
    replied
    I know what you are going through

    Originally posted by arkitekton View Post
    Late last year, after unsuccessfully trying an Interstim implant, and after a long overdue MRI, my urologist told me that my bladder was "fibrotic"

    He didn't, couldn't, or wouldn't tell me much else, and I'm still trying to get a handle on what it means to have a fibrotic bladder. Are the treatments for an IC bladder similar to any treatments for a fibrotic bladder?

    After nine months on Elmiron it's rare for me to have much pain inside my bladder. By far the worst of my symptoms and the one that badly limits my life is a chronic need to urinate, up to fifty times a day. That need typically surfaces ten minutes arfter the previous urination, and gets painful pretty quickly. Attempts to regulate my voiding hasn't accomplished anything at all.

    I'm also wondering if having a fibrotic bladder simply means that with a reduced ability to store urine, that there's simply no chance that I'll be able to lengthen the times between voiding and lead anything like a normal life again.
    .
    I also have a fibrotic bladder and I urinate every couple of minutes. I have to wear pads because it's impossible to go to the bathroom every minute or two. Pressure is almost constant and life is miserable. I too get depressed.

    None of the first to fourth line treatments seems to be geared for a fibrotic condition.

    I try my best to cope, work full time. And have recently started yoga but it's so hard...

    What I find difficult is the lack of understanding by others- family, friends etc- because I look healthy. I think that people can't believe it's as bad as it is. Because I work and look healthy.

    I have tried two stem cell treatments with dr. Lander from the California stem cell treatment centre which have not worked for me. I am following other research currently being done in the area of stem cells which may help with bladder regeneration. But these treatments will likely take 5 years or more to become available.
    Last edited by ICNDonna; 07-12-2013, 02:17 AM.

    Leave a comment:


  • fairydust
    replied
    don't give up hope4 eva.if you give up and have no luck with the specialists,then what chance do the rest of us have.i know it is horrible what you are going through but with time,medical science might finally come up with something that works.hang in there.

    Leave a comment:


  • hope4eva
    replied
    I feel like giving up sometimes docters b rushing me out the room or they just don't listen to me and form there own opinion of what could possibly b causing my pain really frustrating to,! U must b ****** welll.pm good night

    Leave a comment:


  • arkitekton
    replied
    Originally posted by Leslieann0605 View Post
    Here is the definition of fibrotic from the free online dictionary.
    Fibrotic
    Pertaining to or characterized by fibrosis. In dermatological description, "fibrotic" would be used to describe leathery, bound-down, or thickened, scarred skin.

    How many doctors have you seen? Sounds like your doc is not very good at communication. Are there ay other doctors in your area? You would be surprised how much better some docs can communicate and what a difference it can make in your care!
    I'm on my fifth urologist. Frankly, I've given up dealing with urologists except for renewing prescriptions for Terazosin and Elmiron. The last one recommended an implant before trying instillations because it's more profitable for him. It's all of a piece with things like, I go to a dentist and specifically tell her I don't want a certain tooth drilled. Ten seconds later she starts drilling that tooth. Later in the appointment she manages to deal with a cavity in such a way that leaves me with a lisp. For the first time in my life I have a lisp, and I'm now in the process of finding another dentist who can undo the damage. I went to a rheumatologist to get help with fibromyalgia, and the man sits there and in all earnestness tells me the story of The Princess and The Pea. He's certain, you see, that that's the problem with most of his patients.

    I just can't do it any more. The incompetence and worse is too much.

    Leave a comment:


  • Leslieann0605
    replied
    Here is the definition of fibrotic from the free online dictionary.
    Fibrotic
    Pertaining to or characterized by fibrosis. In dermatological description, "fibrotic" would be used to describe leathery, bound-down, or thickened, scarred skin.

    How many doctors have you seen? Sounds like your doc is not very good at communication. Are there ay other doctors in your area? You would be surprised how much better some docs can communicate and what a difference it can make in your care!

    Leave a comment:


  • arkitekton
    replied
    Landish--sorry for not replying sooner.

    I've lost track of a lot of things in the past couple of years.

    I've had IC since around 2006. It would be useful to get a definitive diagnosis. If the volume of my bladder is reduced, and/or even a small amount of urine is going to trigger the urge reflex, some courses of treatment are probably useless, while others might be indicated.

    Have you heard of anything that might restore elasticity to the bladder? I wonder if glucosamine could possibly help? I don't understand the process by which glucosamine is absorbed into the body, so I can't say whether it might be helpful. What about gelatin?

    I'll start a thread on this this evening, in case you're interested.

    Leave a comment:


  • Landish
    replied
    Originally posted by arkitekton View Post
    Ah--okay. From what he said, my impression was that my bladder had become fibrous, and therefore inelastic, therefore unable to store much urine and therefore much more likely to signal early as it filled that I needed to urinate. .
    I think you are absolutely right. How long have you had IC? The urologist who diagnosed me said that the inflammation may create scars and the bladder becomes inelastic. I think I am at that point.

    Leave a comment:


  • arkitekton
    replied
    Originally posted by ICNDonna View Post
    It means you have inflammation in your bladder.


    Donna
    Ah--okay. From what he said, my impression was that my bladder had become fibrous, and therefore inelastic, therefore unable to store much urine and therefore much more likely to signal early as it filled that I needed to urinate.

    Does that make any sense to you, Donna, or am I completely off track?

    Thank you.

    Leave a comment:


  • arkitekton
    replied
    Originally posted by Eline View Post
    Hello,

    If you're uro diagnoses you but is unwilling to give you a decent explanation, you should consider getting a second opinion if possible. Especially if you aren't receiving any treatment that is working for you yet.

    Good luck!
    Thanks--I think it's more that he's like most docs. Doesn't really know how to explain things. I have had an MRI done, and two cystos, so that should be enough to get a useful second opinion. Good advice!

    Leave a comment:


  • Eline
    replied
    Hello,

    If you're uro diagnoses you but is unwilling to give you a decent explanation, you should consider getting a second opinion if possible. Especially if you aren't receiving any treatment that is working for you yet.

    Good luck!

    Leave a comment:


  • ICNDonna
    replied
    It means you have inflammation in your bladder.


    Donna

    Leave a comment:


  • arkitekton
    started a topic Diagnosed with "Fibrotic Bladder"

    Diagnosed with "Fibrotic Bladder"

    Late last year, after unsuccessfully trying an Interstim implant, and after a long overdue MRI, my urologist told me that my bladder was "fibrotic".

    He didn't, couldn't, or wouldn't tell me much else, and I'm still trying to get a handle on what it means to have a fibrotic bladder. Are the treatments for an IC bladder similar to any treatments for a fibrotic bladder?

    After nine months on Elmiron it's rare for me to have much pain inside my bladder. By far the worst of my symptoms and the one that badly limits my life is a chronic need to urinate, up to fifty times a day. That need typically surfaces ten minutes arfter the previous urination, and gets painful pretty quickly. Attempts to regulate my voiding hasn't accomplished anything at all.

    I'm also wondering if having a fibrotic bladder simply means that with a reduced ability to store urine, that there's simply no chance that I'll be able to lengthen the times between voiding and lead anything like a normal life again.

    I stopped posting last year because I got very depressed about this and other news, and about the lack of change in my symptoms, but I hope everyone is doing well, and always appreciated the support I got on this site.
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