Why is Interstitial Cystitis so commo...

Why is Interstitial Cystitis so common now with no cures yet???

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Kcee

Coral Gables, FL

#1 Mar 27, 2006
I was diagnosed with IC 4 years ago and I am still on Elmron the only medicine that they make for IC and I still have to take pain medication a couple of times a day. The pain is much better now than when I was first diagnosed or either I am just used to pain now however the pain is there 24-7. Does anyone have any suggestions as to what they do to relieve the pain? Has your IC every gone away?
melissa

Hollywood, FL

#2 Apr 7, 2006
take alganot or cystoprotek. they are completely natural - your body makes what's in them. they can be found on ic-network.com
i was on elmiron for four years and it has too many BAD side effects. look it up. it can cause your brain to hemmhorage & your blood not to clot. i got nosebleeds, dizziness, migraine headaches....one was so bad it was probably a brain bleed...i was afraid to go to the dr. with no insurance).
Jan

AOL

#3 Jun 5, 2006
i have a UTI now and no bacteria grew in my urine. Does this mean I might have IC? I read of some cures on the net. Has anyone tried these at all. D Mannotol was one
allison

AOL

#4 Jun 5, 2006
my doctor wants to give me a "franken ganglia" injection to stop the cycle of IC pain. does anyone know anything about this?
Jan

AOL

#5 Jun 5, 2006
Kcee wrote:
I was diagnosed with IC 4 years ago and I am still on Elmron the only medicine that they make for IC and I still have to take pain medication a couple of times a day. The pain is much better now than when I was first diagnosed or either I am just used to pain now however the pain is there 24-7. Does anyone have any suggestions as to what they do to relieve the pain? Has your IC every gone away?
Have u ever tried D Mannotol. they sell it on the internet it is all natural
Kcee

Coral Gables, FL

#6 Jun 7, 2006
allison wrote:
my doctor wants to give me a "franken ganglia" injection to stop the cycle of IC pain. does anyone know anything about this?
Never heard of this one and I have been to 8 Urologist, just be careful if your going to just a "Medical doctor" they just aren't as informed on IC as a Urologist.....
Kcee

Coral Gables, FL

#7 Jun 7, 2006
Jan wrote:
i have a UTI now and no bacteria grew in my urine. Does this mean I might have IC? I read of some cures on the net. Has anyone tried these at all. D Mannotol was one
No, IC is all of the time and NEVER seems to go away. But recurring bladder problems are a sign of IC.
Kcee

Coral Gables, FL

#8 Jun 7, 2006
melissa wrote:
take alganot or cystoprotek. they are completely natural - your body makes what's in them. they can be found on ic-network.com
i was on elmiron for four years and it has too many BAD side effects. look it up. it can cause your brain to hemmhorage & your blood not to clot. i got nosebleeds, dizziness, migraine headaches....one was so bad it was probably a brain bleed...i was afraid to go to the dr. with no insurance).
I have never heard of it what is it? I have been on Elmiron now for about the same time you were on it and the pain is really still there. I have dizziness sometimes to.....
Jan

AOL

#9 Jun 11, 2006
Kcee wrote:
<quoted text>
No, IC is all of the time and NEVER seems to go away. But recurring bladder problems are a sign of IC.
Have you ever been tested for endometriosis? And have you ever seen a specialist called a urogynecologist. My nurse practictioner says I have a cystocele and I am going to see one of those on June 21. Maybe since my bladder is out of place, this is why I am having these symptoms. I hope they can help me cause if I have to suffer like this forever, I am going to kill myself. I am not going to live like this for the rest of my life.
Kcee

Coral Gables, FL

#10 Sep 5, 2006
Jan wrote:
<quoted text> Have you ever been tested for endometriosis? And have you ever seen a specialist called a urogynecologist. My nurse practictioner says I have a cystocele and I am going to see one of those on June 21. Maybe since my bladder is out of place, this is why I am having these symptoms. I hope they can help me cause if I have to suffer like this forever, I am going to kill myself. I am not going to live like this for the rest of my life.
Hi Jan,
Did you go see your doctor? And no I had never heard of them. I have been to many urologist though. Hopefully they gave you some hope. And your not going to kill yourself STOP IT!! But I know what you mean. Sometimes I just cry because I'm so tired of it, so tired..........
Ashlee

United States

#11 Sep 14, 2006
Kcee wrote:
<quoted text>
No, IC is all of the time and NEVER seems to go away. But recurring bladder problems are a sign of IC.
I was getting bladder infections all of the time also. They could never culture any bacteria. They did a cystoscopy and a bunch of ultrasounds. Finally they told me i had a hypervascular bladder. after 6 months of medication with no progress, but worsening and a few more tests they just diagnosed me with IC. I know there is no cure but is this something your body can overcome????
Caroline - England

UK

#12 Oct 6, 2006
hey i have had this problem for as long as i remember. i dont remember having a nice wee!! the doctors over here keep fobbing me off. drug after drug. they never listen to me. ive had a camera thing, a bladder stretch, a shrink, hot water bottles, hot showers, pain killers. nothing works. i have lost all hope so many times. it rules my life. there is the odd day hen i can forget i have it and get on. but then ill sneeze or someone will put cold hands on me and shock me, and poof its back again. anyway... please if any has any ideas. let me no
Gcleff

White Haven, PA

#13 Oct 12, 2006
Is all this dizziness normal? Does anyone else have problems with there eye twitching constantly?
Debbie

Baltimore, MD

#14 Oct 25, 2006
Hang in there everyone...here is a little more insight about whats going on as of now for I.C. treatmeant... http://www.ichelp.org/pressreleases/PR2004-07...
jason

London, UK

#15 Oct 29, 2006
Hi

Ive been surrering from uti's since I had a spinal cord injury 16years ago and I tried a natural product called Dmannose which has stopped my urine infections.This products also works with cystitis.For more information visit www.dmannose.co.uk

You will be sooo suprised how good this works
Sweetpea

Worksop, UK

#16 Nov 24, 2006
When my father died a few years ago i suddenly got Cystitis it got worse and worse and like the lady mentioned earlier they could not find any bacteria in my urine when I complained that it would not go away. i had ultrasound to check my kidneys etc I was in perfect health so all they could offer me was continuous antibiotics over months which i did not want. I eventually looked on the internet and found a natural substance called D-Mannose which worked for me. I took the D-Mannose the 1st time and i was in alot of pain but perservered with it and then suddenly the pain started to disappear. It happened a couple of times like that afterwards and then when I felt my cystitis coming on I took the D-Mannose and it would go without the real painful bit. I have been without a bout of cystitis for several months now, apart from this morning when I felt a bit saw -took some D-Mannose and it went. Its been a life saver for me.
Jaydee

London, UK

#17 Jan 1, 2007
God does anyone else cry like all the time when they have it? I cant help it, im just in so much pain, and so tired, yesterday i started blubbing down the aisle of a shop i work at! I just cant seem to stop crying when i have it i feel so low. Any one else suffer from this? The cystitis is bad enough without the weird dramatics im suffering!
Bonnie-Canada

Saint John, Canada

#18 Jan 8, 2007
Caroline - England wrote:
hey i have had this problem for as long as i remember. i dont remember having a nice wee!! the doctors over here keep fobbing me off. drug after drug. they never listen to me. ive had a camera thing, a bladder stretch, a shrink, hot water bottles, hot showers, pain killers. nothing works. i have lost all hope so many times. it rules my life. there is the odd day hen i can forget i have it and get on. but then ill sneeze or someone will put cold hands on me and shock me, and poof its back again. anyway... please if any has any ideas. let me no
I have had ICS for the past 3 years. I have been on every drug known to man. My doctor put me on Elmiron for the past 2 years. It doesn't work. I have taken matters into my own hands. I spent alot of hours on the computer looking for answers. Then I decided to try everything and see how I made out. I have come to discover that acid in food is our worst nightmare for this disease. I live in Canada and do not have alot of the cure options as in the U.S. My best results so far were as follows: Antihistamine (ex. claritin, reactin, etc), Prelief (only in US-I order on line-take often-read about it online), and last but not least a little pill your doctor can give you a prescription for Buscopan 10mg. These pills are magic. Works in less than 5 minutes for those bladder spasms when you feel like your bladder is going to explode from pressure. Hopefully this will help you. From this mixture I can now leave the house. I have ICS extremely bad. You have to find what works for you. Your doctor can only play trial and error with you. Remember he doesn't have the problem and has no idea what you are going threw. Everyone is different and only you can find what works for you. Don't be afraid to try new meds and mix and match a few until you find one that is right. You may also have to change them from to time to time. This lovely disease also has a habit of the meds only working for a while and you have to find something else, like your body gets ammune to the stuff your taking. This has probably already happened to you. Good luck
lucy

United States

#19 Jan 26, 2007
I've been on and off for long periods of time, pain free...I find that this time around the old baking soda trick doesn't seem to be working as it has in the past...I also have found that when a mild bout has come that taking a homeopathic remedy called sepia has stoped the carrying a bowling ball sensation...and even that's not working out to well...along with tht I've tried several other herbs etc...including the d manose...maybe I just need to be more consistant...anybody know...or have any other suggestions?
JillO

Santa Rosa, CA

#20 Jan 30, 2007
Folks... Interstitial cystitis is, essentially, injury to the bladder. It means that the bladder, like any other part of the body, can be injured... and it often occurs after a UTI, a fall, car accident or even if you've been a junk food junkie slamming down the sodas.

The confusing part is that the bladder only knows one language.. it tells us that it's in trouble by giving us the symptoms of frequency, urgency, pressure or pain. 90% of the time, most patients going to the doctors with these symptoms really do have a UTI. But, if you're like me, you urine testing comes back negative despite the fact that your bladder is very uncomfortable. That's when we start to suspect injury as a potential cause for those symptoms.

In any case, there ARE several treatments for IC that hold great promise. D-Mannose, however, is a waste of time because there is NO infection found in most Ic patients. However, if you struggle with recurring E-coli infections, it can be helpful.

For IC, we're going to look at modifying diet immediately so that you're not provoking the irritation in the bladder and making it worse. There are some conservative and alternative approaches to treating IC... the most promising being the use of rescue instillations, antihistamines and, if you're interested in OTC products, Cystoprotek and CystaQ.

In any case, if you'd like to learn more about IC, I invite you to come visit our website, the IC Network. We were one of the very first health websites ever built back in 1995 and now provide more than 300,000 support sessions a month! You can review our online patient handbook, guest lecture transcripts, extensive support forum, weekly chats and much more! http://www.ic-network.com

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