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
Announcement
Collapse
No announcement yet.
Diagnosed with "Fibrotic Bladder"
Collapse
X
-
I know what you are going through
Originally posted by arkitekton View PostLate 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.
.
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:
-
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:
-
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:
-
Originally posted by Leslieann0605 View PostHere 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 just can't do it any more. The incompetence and worse is too much.
Leave a comment:
-
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:
-
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:
-
Originally posted by arkitekton View PostAh--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. .
Leave a comment:
-
Originally posted by ICNDonna View PostIt means you have inflammation in your bladder.
Donna
Does that make any sense to you, Donna, or am I completely off track?
Thank you.
Leave a comment:
-
Originally posted by Eline View PostHello,
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:
-
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:
-
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.
Leave a comment: