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Old 07-24-2007, 07:32 PM   #1
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Interstitial Cystitis and vitamins?

So after what I thought were UTI's that wouldn't go away, I went to the urologist and he did some tests and he thinks I might have interstitial cystitis. I'm reluctant to get a cystoscopy because I don't like having unnecessary invasive procedures. So I told him I just wanted to wait and see how I felt.

I was feeling fine for quite some time until about 3 days ago. After having a recent blood test, my doctor informed me that I have a b12 deficiency and I needed to take 1000mcg of B12 every day until my next appointment.

So I started taking the B12 and shortly after I started with urinary/bladder discomfort, feelings of pressure, feelings of having to urinate, etc. etc. And it's gotten worse - worse than it's ever been in the past year.

Is it possible that the high amount of this vitamin is causing irritation that's causing me these symptoms?

 
Old 07-26-2007, 03:37 AM   #2
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Re: Interstitial Cystitis and vitamins?

I was dxd with IC a few years ago. I am not med/supplement sensitive, but know many with IC who are. I am more sensitive to foods than I am meds, and knowing what my food triggers are and avoiding them is one of the most important things in controlling my symptoms. That said, my symptoms are often triggered by stress, exhaustion, exercise... and sometime symptoms appear for no reason at all. That is the nature of IC, sorry to say. You could try stopping the B12, after discussing it with your dr, to see if that is the culprit. IC triggers are often determined by trial and error. There are also many standard protocol IC meds that could help with you symptoms: Elavil, Atarax, Pyridium, pain meds, low dose valium or muscle relaxers, and of course Elmiron, but that takes quite some time to work, if at all, so usually the other meds I listed are started along with elmiron to give more immediate relief. I agree with you on invasive procedures, especially when there are meds that are proven to relieve your symptoms....they're worth giving a try to see if that will help your symptoms and get you back on track before submitting to cystocopy or any other invasive bladder procedure. Best wishes.

 
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Old 07-26-2007, 05:06 AM   #3
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Re: Interstitial Cystitis and vitamins?

For me, exercise actually makes the pain go away, until I stop exercising - then it slowly comes back but doesnt get worse. I wasn't going to see the dr for about two weeks, but I was able to move it up. So I stopped taking the supplement for a few days.

I'm not sure I'm ready to just say it's IC. Maybe it was just coincidental. My mother had recurrent UTI's for years, and sometimes nothing showed up on the culture. But she was placed on macrobid or some long term antibiotic for like a month or two, and she said that worked for her. When I go in I'll ask the dr to do a culture anyways.

Are there any symptoms that you would know of that definitely point to IC over a UTI?

 
Old 07-26-2007, 05:37 PM   #4
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Re: Interstitial Cystitis and vitamins?

IC is often triggered by a UTI, or what appears to be a UTI (blood in urine for example, but when cultured, no infection). Symptoms can stick around for months on end, sometimes they come and go by the minute, hour, day... it varies from person to person. Some have just urgency and frequency, others also have pain...in the pelvic/bladder area but the pain can be referred to other areas...most commonly the lower back, hips, achey tired inner thighs, and also vaginal and vulvar pain, irritation, sensitivity and pain during or after intercourse. Other very common symptoms are burning feeling in the bladder, a feeling of constant pressure in the pelvic area, feeling a need to pee, but little comes out and does not relieve the sensation of needing to go, pain or burning during or after urination. Some people have problems with retention or getting the stream started. Most people have some or a combo of these symptoms, but unfortunately I can't say that there is one particular symptom that would make a definite IC diagnosis. There is also the PUF survey that your uro should have you fill out and a test called the Potassium Sensitivity Test that can be helpful in diagnosing IC. It is much less invasive than a cystoscopy, less expensive and is done in office. First one solution is cathed into the bladder, then cathed out. Then another solution is cathed in and cathed out. One of the solutions is sterile water, the other is a potassium solution...if the K solution causes pain or burning, then that indicates that your bladder may be inflamed and often then a dx of IC is given. I know I listed a lot of symptoms that sound terrible...I have most of them...but I have a treatment plan that works well for me and I work fulltime and lead a normal life. I hope you don't have IC, but if you do, most people find a good treatment plan and their symptoms improve dramatically.

 
Old 07-26-2007, 08:12 PM   #5
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Re: Interstitial Cystitis and vitamins?

Thanks for all the information. I think I'm going to monitor when the symptoms occur. When I go to the dr I may insist on a course of antibiotics even if they don't see any bacteria, and if i continue to experience pain like I've been experiencing while taking the vitamin, I'll know for sure it isn't a UTI and seek further treatment.

I really hope it's a recurrent UTI :-/

Oh here is something I think is kind of strange - I've heard that caffeine is an irritant, especially for people with IC. However I've noticed that whenever I've had pain and I drink some coffee or a caffeinated beverage, the pain/pressure/urgency actually goes away a little bit or entirely.

Last edited by skittles411; 07-26-2007 at 08:19 PM. Reason: thought of something to add

 
Old 07-26-2007, 10:23 PM   #6
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Re: Interstitial Cystitis and vitamins?

The diet triggers are as varied as the symptoms for each person with IC. Coffee is very acidic, and is usually a big trigger for most people. I used to drink it daily but now only on the weekends and watered down with half milk. So is alcohol, but I can drink beer and it gives me symptom relief, but if I drink red wine...I pay.
A round of antibiotics might be helpful at this point...antibiotics can have an anti-inflammatory action to them. When I first had symptoms I had blood in urine but no infection. The antibiotics gave me relief for about a week, but then all the symptoms came back with a bang and have hung around ever since.
Keep us posted on how things go...only someone who has IC would hope to have a UTI, LOL, at least there is cure for that! Best wishes, and I will keep my fingers crossed for you that it is just a UTI.

Last edited by ~briza~; 07-26-2007 at 10:24 PM.

 
Old 07-28-2007, 10:00 AM   #7
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Re: Interstitial Cystitis and vitamins?

They are going to send away for a urine culture, so I'll find out next week if anything came back on it.

I remembered that I have some Aloe Vera capsules lying around from when I got them to help with some of the gi problems I was having. I may try taking them again. Have you tried taking aloe vera and if so, does it help?

 
Old 07-29-2007, 04:47 PM   #8
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Re: Interstitial Cystitis and vitamins?

I've never tried the aloe capsules but do know some who have IC who swear by it. They say it has a coating effect on the bladder lining. I've heard from others who have reacted badly to it, like a food trigger.
If your dr didn't rx you any Pyrdium, it can be bought OTC as AZO standard or Uristat...it's the stuff that turns your pee orange but can really help with the burning and pain caused by a UTI and I take it almost daily for the burning caused by my IC. There is another med that may be more helpful if you have recurrent UTIs, it's called Urelle and is available only by prescription. It has an additional ingredient in it that helps prevent bacteria from sticking to the bladder walls. Just a couple of things you could discuss with your dr. Either way, if you do have a UTI, Pyrdium or Urelle is almost always Rxd along with an antibiotic. It can really help with the burning, pain, and bladder spasms.

Last edited by ~briza~; 07-29-2007 at 04:48 PM.

 
Old 08-03-2007, 04:03 AM   #9
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Re: Interstitial Cystitis and vitamins?

I have azo standard, but when I take that, sometimes not all of the pain goes away. Here's another question - when urine gets sent off to be cultured, can they determine if you have any type of bacteria, or just e.coli? The reason I ask is that I want to explore all of my infection possibilities before I go back to the uro. I'm pretty sure I don't have an std or anything, but there's always that chance.

I haven't heard back on the culture yet, and I'm trying to pay attention to see if I notice any possible food triggers. I went on bactrin anyway just to be safe. I seem to be feeling better but that could be the azo working better than it previously was.

 
Old 08-05-2007, 04:48 AM   #10
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Re: Interstitial Cystitis and vitamins?

I think the urine is cultured so that you can be rxd a med spefically for the bacteria that have. In the meantime thsy usually rx bactim or Cipro since those are what are most cmmonly needed.

 
Old 08-14-2007, 06:13 AM   #11
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Re: Interstitial Cystitis and vitamins?

Ok I was taking bactrim, and I started to go on the vitamin again no problem, so I'm guessing that's not causing my pain. But a few days after I stopped the bactrim, symptoms are back. I guess that's kind of what you described.

 
Old 09-19-2007, 03:49 PM   #12
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Re: Interstitial Cystitis and vitamins?

Symptoms are still coming and going, and I can't seem to pinpoint any "triggers". The multivitamins and b12 doesn't seem to have any effect one way or the other now. I have not been back to the Uro, as I do not want him to just tell me that I need a Cystoscopy. This is really frustrating though. Now it seems like I'll go through a period of time where I get pressure and I can't urinate for hours, even though I know I should go. Then other times I can go every 10 minutes.

In addition I visited the gyn a little while ago and she informed me I had a yeast infection. So she prescribed me a cream. Symptoms seemed to get a little better about half way through the cream and a few days after. I went back two weeks later and I still had a yeast infection so she prescribed me some more stuff. Maybe this has to do with some of the discomfort but it can't be the cause for all of it.

 
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