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Interstitial Cystitis (IC) Message Board
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Old 01-02-2009, 10:44 AM   #1
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Living with Interstitial Cystitis

Hi. I was diagnosed recently with Interstitial Cystitis after a series of UTI's-followed by symptoms where bacteria was not found. To diagnose, the urologist had me keep a voiding journal for a few days and then did an ultrasound plus several urine samples were tested. At the end of this process, she informed me my bladder was ok but that I must have interstitial cystitis. She told me it was incurable and then handed me a food list and recommended that I try prelief when symptoms were bad. I was essentially hurried out of her office and told I didn't need any followup appointments unless things got worse. I apparently have a mild case at the moment--discomfort in pelvic area is main symptom plus frequent urination/frequent urges to urinate.

So, I got online and started to read about this condition and am thoroughly freaked out by the stories of intense pain, ruin lives and misery. Can anyone give me some positive stories about dealing with this condition? I will be calling my gynecologist next week for an appointment once she's back in the office from the holidays but I'd really like some advice now.

I had lots of food allergies when a child, but haven't paid much attention to them as they seemed minor. I could get away with eating modest amounts of citrus, wheat etc. I've always gone to bathroom a lot, and assume the increase (about 12 times a day) has come on gradually. Since I didn't know it wasn't normal to go to the bathroom about every 2 hours, I didn't worry about it. I drink lots of fluids and so attributed it to the fact that I'm constantly drinking water.

Anyway, I'm now so stressed out about this and my future. I just had hip replacement surgery a few months ago and have been so pleased about getting rid of one long term, chronic pain and am so upset that something else that sounds potentially worse has developed.

Any info would be very welcome about how this disease develops and whether people are able to live normal lives with this condition. If its just a matter of watching my diet, I can live with that. Does it always progress to something severe?

In tears in Texas.

Maggie

Last edited by Larimergirl; 01-02-2009 at 04:23 PM. Reason: changed "doctor" to "urologist"

 
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Old 01-06-2009, 06:51 AM   #2
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Re: Living with Interstitial Cystitis

I was diagnosed with IC a couple of years ago. My symptoms were intense urges to urinate 'right away' and voiding all day long - sometimes every 15 minutes or so. I was miserable and afraid to go out for fear of not being able to get to a bathroom in time. Sometimes only a tiny bit or urine would come out and I'd feel the urge to 'go' right after I just went.

I was diagnosed with IC by my GYN's partner who specializes in urology and also had a second opinion of a urologist who found the same diagnosis. My GYN prescribed Enablex for overactive bladder and it helps a LOT. Ask your doctor about meds to help relieve the symptoms of urgency and frequency. Hope it helps!

 
Old 01-06-2009, 06:49 PM   #3
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Re: Living with Interstitial Cystitis

Thanks for the advice. I went to see my urologist today and she prescribed Sanctura--which also gives relief to urge to urinate/frequency problem. She also prescribed Elmiron.

 
Old 01-06-2009, 07:37 PM   #4
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Re: Living with Interstitial Cystitis

Hello,

There are bladder medications that you can take to treat the frequency of urination. You should strictly follow the food and beverage diet modifications. You want to eliminate spicy and acidic foods and beverages as much as possible as they just irritate the bladder lining and cause more bleeding.

Ask you physician about bladder instillations they are helpful for the treatment of I.C. I am not sure if all physicians perform them in there office but I have seen it help many patients.

Take Care
ARIES18

 
Old 01-07-2009, 04:03 AM   #5
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Re: Living with Interstitial Cystitis

Excellent! Good luck on your meds.

 
Old 01-07-2009, 12:59 PM   #6
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Re: Living with Interstitial Cystitis

Quote:
Originally Posted by bp8me2 View Post
Excellent! Good luck on your meds.

Thanks. She also prescribed amitriptyline (elavil) but since I know it causes me to gain weight, I called her back today and asked if I could see how the
Sanctura XR worked before starting amitriptyline. I just had a hip replacement a few months ago and am trying to work off weight that I added when I was in pain with hip and mobility was limited. She argued that I could avoid weight gain by a controlled diet and exercise, but I am already going to Weight Watchers and working out at gym. I worked out at the gym years ago when I took the drug for migraines and still gained weight. So, I'm going to try the Sanctura for a week or so and see how I feel. If I'm still feeling pressure then I'll start the amitriptyline too. I'm a little nervous not being obedient to doctor's initial orders, but I don't want to add another drug to the mix if I really don't need it. But, I'm glad to already have the prescription in hand if I do.

Maggie

Last edited by Larimergirl; 01-07-2009 at 01:00 PM.

 
Old 01-07-2009, 06:00 PM   #7
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Re: Living with Interstitial Cystitis

Hi, i've had ic for 14yrs.and i just wanted to let you know that i was on elavil and had a significant wt. gain but it was great for ic. However, i did eventually taper off of this med and i am now taking 75mg. of hydroxyzine at night. I also had lot of food allergies as a child and this med. has been great for me. I think i would try this before getting on the elavil because of the wt. issue. You will have to be patient though because it may take a month or 2 to really start working. Also it will be very,very sedating at first but if you can get thru the that first few weeks to a month it will become less and less sedating. Alot of people won't take this med because of this. I don't have any sedation i just sleep great!! Hope this helps some! good luck

 
Old 05-21-2010, 07:46 AM   #8
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Re: Living with Interstitial Cystitis

Well, I can tell you that there is a theory out there that IC is kinda like a food allergy of the bladder...if that makes sense. I too have always had troubles with eating or drinking certain foods. If I had coffee, you better clear out of the bathroom for the next few hours, cause I am going every 10 mins. I can tell you that limiting you diet and eating bladder friendly foods does help BUT that is a long process. So don't get discouraged when it doesn't help right away. There are a LOT of additives in foods that hurt your bladder and you wouldn't even know it. Eating a high protein low carb diet does seem to help me. Plus drinking a LOT of water helps me. BUT some IC patients can only tolerate certain water. I can only have Fuji or water run through a Brita filter.
Second, I have been on EVERY med and done EVERY treatment known to man to try and help my IC....nothing has truly worked. In fact I believe the meds made my IC worse. So I started on herbs and have been doing better and better each day. Some days are still pretty bad, but others are good. I had my first alcoholic beverage in 2 years without pain. Now that is a real accomplishment! I know that my IC probably will always be ther, but I know that there are ways to help it and treat it that work for me. it is a HORRIBLE condition to have and does ruin your life...BUT only if you let it. Remember, YOU ARE MORE THEN IC. IC CAN NOT TAKE ANYTHING AWAY FROM YOU THAT YOU DON'T GIVE IT!

 
Old 11-29-2010, 10:39 AM   #9
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Re: Living with Interstitial Cystitis

To mmquantrell---What herbs have you been taking for you IC? I've had it for over 20 years now and have just learned to live with it. Luckily I have no pelvic pain, just the constant need to urinate (which is bad enough, but not painful). It does affect my sleep quite a bit so I'm always looking for any breakthroughs or advice from other sufferers.

When I have flare ups that are worse than the usual, I take Rolaids or drink baking soda in water and that calms my bladder a bit.

But I'm interested in any herbs you could tell me about.

Thanks!

 
Old 12-13-2011, 05:20 PM   #10
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Re: Living with Interstitial Cystitis

I was diagnosed via cystoscopy in June. My bladder looked shocking and I was immediately given a prescription for Elmiron. This is one of the few drugs in Australia that is not covered under our PBS scheme, so it costs me $140 per month. Elmiron completely controls my symptoms which are urinary urge/frequency. I was symptomatic for 5 years, so to be symptom free is quite a relief!

 
Old 01-13-2012, 08:57 AM   #11
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Re: Living with Interstitial Cystitis

stay off the foods on the list...seriously. give it time. prelief works.

 
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