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Old 11-14-2010, 01:49 PM   #1
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Think I have IC

I have Lupus and Fibromyalgia and am in a flare of the FMS right now. I've recently been having symptoms of urinary frequency, urgency, voiding small amounts, and not fully emptying my bladder. I have a history of ureteral suspension six plus years ago for stress incontinence. I'm wondering if that wasn't needed and I was really suffering from IC.

These episodes of symptoms happen for awhile and then go away. My urinalysis always shows blood in the urine in varying amounts, but has never shown to be an infection. I suspect that I have interstitial cystitis because of the symptoms and the fact that I have an autoimmune disease.

Recently I was having bad symptoms, and then I realized that I had been drinking a lot of diet pink lemonade and wondered if maybe that was what was irritating it. Sure enough, when I stopped drinking it and went back to water, my symptoms improved. I had problems before when I was taking potassium with a diuretic. So, I was wondering if this sounds like IC, and if it does, what is the next step to an official diagnosis or treatment?

I know that staying away from acidic foods and liquids is indicated, and obviously helps me. I don't particularly want to take more medication, so I pose this question: If I don't take anything to make the lining of my bladder less irritated or heal, will it eventually get ulcers and get worse and be more likely to become bladder cancer?

Any replies are welcome,
Thanks,

 
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Old 11-14-2010, 02:45 PM   #2
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Re: Think I have IC

In school we learned that some chemical substances do of course irritate the bladder, and other organs of the body. I generally avoid chemical substances as a rule in all canned and boxed items. Most truly healthy people live on food better than on chemicals.

 
Old 11-14-2010, 10:22 PM   #3
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Re: Think I have IC

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In school we learned that some chemical substances do of course irritate the bladder, and other organs of the body. I generally avoid chemical substances as a rule in all canned and boxed items. Most truly healthy people live on food better than on chemicals.
Thank you for your reply. You do not say if you suffer from IC or if your low chemical intake has helped with the symptoms.

Actually, I was just adding a little pink lemonade to my water to flavor it, so I wasn't getting much, now that I think about it. I am on a special diet for hypoglycemia, so I am actually eating very healthy foods, albeit not organic and most likely won't qualify to be "low chemical." I suspect even if I had squeezed a little bit of a real lemon into my water, the result would have been the same. I would think that the acidity of the lemon or the citric acid in the "chemical" lemonade is the culprit.

I just read an article on IC that says, "Many people with IC are able to identify specific foods that exacerbate symptoms. The most common offenders are acidic foods such as citrus juices, tomato products, alcohol, chocolate, carbonated beverages or vinegar."

I can't have any sugar, starches, including flour or pastas, rice and the like. No carbonated beverages, no caffeine, and very low fruits and no juices. I eat mainly low fat proteins and vegetables. I'll sometimes have decaf tea with some Stevia in it, but I pretty much stick to filtered water. That gets boring after a while. But, I guess if I don't want to have to run to the bathroom every hour, then I will have to refrain from a splash of Crystal Light.

I also read this: "In numerous cases, IC occurs in conjunction with other conditions, including Fibromyalgia..." It goes on to suggest a theory that IC could be due to an autoimmunity/ inflammatory response and mast cell abnormalities. And since my FMS is in a flare, it would make sense that my bladder symptoms would be related.

Just wanted to know if anyone thought that this sounded like IC. Will see my doctor tomorrow and hope to get some answers.
Best Regards,

 
Old 11-16-2010, 06:18 PM   #4
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Re: Think I have IC

Your next step would be to be diagnosed. You should see a urologist about your symptoms. You may be given a potassium sensitivity test (when they put potassium and sterile water in your bladder). IC bladders would feel pain when this is done to indicate IC or not. You may also have a cystoscopy with hydrodistention to see if there is inflammation of your bladder or if your bladder has shrunk due to the inflammation.

I've been diagnosed with IC since '08 but has suffered from it's symptoms for many years. Please feel free to ask me any questions.

Good Luck!
Aleet7

 
Old 11-17-2010, 06:17 AM   #5
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Re: Think I have IC

Quote:
Originally Posted by aleet7 View Post
Your next step would be to be diagnosed. You should see a urologist about your symptoms. You may be given a potassium sensitivity test (when they put potassium and sterile water in your bladder). IC bladders would feel pain when this is done to indicate IC or not. You may also have a cystoscopy with hydrodistention to see if there is inflammation of your bladder or if your bladder has shrunk due to the inflammation.

I've been diagnosed with IC since '08 but has suffered from it's symptoms for many years. Please feel free to ask me any questions.

Good Luck!
Aleet7
Thank you very much for your response and offer. I spoke with my doctor and he said that he had also noticed that I had been having blood in my urine on my last several urinalysis and he mentioned that if my symptoms continue, that having that diagnostic test would be the next step. My symptoms have been better since I quit adding acidic drinks to my water to flavor. But, the question remains: Do I have to go through the trauma of the diagnostic test in order to be given treatment?

I read somewhere that something as simple as an antihistamine could help. Couldn't I try that to see if perhaps it would improve my symptoms? I suppose it would be good to have a definite diagnosis, especially if some ulceration were suspected. Then, it could be monitored for improvement. But, I wonder if the trauma from the cystoscopy won't make my symptoms worse and potentially introduce an infection? Okay, I admit it- having a tube rammed up my urethra does not sound like fun and I might make every excuse to have it done. Just like the colonoscopy I have been putting off for years. Been there, done that, don't want to have that again.

I believe that I have probably had IC off and on for many years. I have had protein in my urine before on many occasions, and had seen a nephrologist. I'm sure he was more concerned about kidney involvement with Lupus, and centered his tests on that. I had to do a 24 hour urine test and he concluded that the protein was from the medications I was taking because he could not find any signs of kidney damage. He never checked me for IC.

For years, I have had to get up in the middle of the night to urinate. I could not go back to sleep until I did. I would even have dreams where I was searching for a bathroom, so even the urgency was apparent despite being asleep. I have had intermittent incontinence even in my teens- when I threw up. So, I couldn't really blame that on age or having kids. And, since it hasn't been all the time, that would rule out a "mechanical" problem with the bladder.

However, my mother and sister have bladder and high blood pressure problems, but had them later in life. My sister had a prolapse and wore a pessary for a long time. She eventually had to have surgery with a suspension net. She continues to have frequent symptoms of UTI's and is treated with prophylactic antibiotics in low continuous doses.

My mother is 90 and has frequent UTI's, with one very bad episode where she was chilling uncontrollably and her blood pressure sky- rocketed. She had bladder prolapse and had to have it repaired. She has to take several courses of antibiotics to clear it up. So, there is a genetic link, obviously.

But, my latest symptoms have never resulted in a culture that grew anything. Like most women, I have had UTi's before, and one that was actually silent- without any symptoms and the white cells were too numerous to count on the urinalysis. So, that's why I have to be very diligent in checking my urine when I suspect something.

Last year, I was really sick and I remember having uncontrollable chilling and night sweats and blood pressure spikes- but of course, I have lots of other illnesses that it could have been, but "duh" my urine was never checked. And, I didn't even think to ask the doctor because I was so ill at the time.

Of course, I had a urethral suspension about six or seven years ago. And, that helped with the stress incontinence, but I still do have some off and on, so I'm suspecting it is related to the IC. Sometimes I will just move a certain way, lift an arm, or hear water running and I leak a little. There for a while, I had to wear a pad. Then, without warning, it would go away..

I'd appreciate your opinion on all this history, aleet7, or anyone else. Can you make any sense of this?
Thanks,

Last edited by Sunsetnan; 11-17-2010 at 06:22 AM. Reason: Added

 
Old 11-17-2010, 10:29 AM   #6
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Re: Think I have IC

Hi I am sorry it took me some time to get back to you. You are welcome to look at this site for UTI if you happen to be interested. There are no more bladder symptoms regardless of original cause.

http://www.healthboards.com/boards/showthread.php?t=815628&highlight=uti

 
Old 11-17-2010, 03:55 PM   #7
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Re: Think I have IC

I have heard of patients that had the symptoms and their docs diagnose them without testing...but not often(probably in cases where the symptoms all point to IC). Knowing that blood shows up in the urine is a good reason to test.

Yes antihistamines do help in some cases. This is sometimes added to help with pain. I've been on Elmiron for 2 years now and I've seen much improvement(doesn't work on everyone though).

Regarding having a cystoscopy with hydrodistention, I actually got relief from having this done! I know of others that occasionally have hydrodistention and it helps them with urgency and frequency(an inflammed bladder shrinks causing the urgency and frenquency since it can not hold the normal ammount which is somewhere around 500cc's). My bladder could only hold 200cc's at the time of my cysto/hydro.

Just as your sister and mom...I am having the exact same problems with frequent UTI's and pelvic organ prolapse. I've known since 2008 that I need to have my uterus repaired, cystocele and rectocele repaired( mine is from having 4 children). The pessary is out of the question for me with IC. The pessary irritated my bladder so I could not continue wearing it.

I know you're apprehensive about the diagnostic test but knowing is half the battle! Once you know what's going on...then you can proceed from there. It is then that you can get on the road to healing!
Good Luck Sunsetnan!
Aleet7

 
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Old 11-21-2010, 05:47 AM   #8
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Re: Think I have IC

Thanks aleet7. My symptoms are doing better for now as I've eliminated the citric acid. Like my doctor said, if the symptoms get worse, then he will have me tested or referred to a specialist. But, these symptoms seem to come and go, maybe based on what I eat or drink, or the course of the condition. So, time will tell.

The relationship between me and my doctor is a bit funny. It's as if he is standing there with a needle behind his back and telling me if I don't stop complaining, then he will give me a shot. For example, he asked me if I was in any pain, and I said that my hips were hurting me. He pressed on them and sent me thru the roof. He diagnosed it as bursitis and said that if the pain continued or got worse, he would have to give me a shot of cortisone with a long needle. Well, perhaps he was joking, but it was if he was threatening me not to complain. The treatment sounds worse than the pain that I am in.

Well, when I complained that I had these IC symptoms and there was blood in my urine on urinalysis, he said that if it continued he would have me get tested with an uncomfortable test, almost as if he was threatening me. As if I had any control over my symptoms. So, I think he is warning me that it better be pretty bad for me to complain because the treatment may be worse than the problem.

I get that. I can put up with a lot of things in my life such as pain and discomfort- I have lived with that for a long time. I just don't want the conditions to get worse because they have been neglected. I don't want some specialist to say, "Well, if you had only come to me when it was in the early stages..." And, my doctor is assuming that the degree of symptoms is in direct correlation with the degree of damage. With some conditions, that may not be true. Like I said, time will tell.
Best Regards,

 
Old 12-11-2010, 05:49 PM   #9
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Re: Think I have IC

That is awful to feel that if you complain you will be put in more pain by treatment(although I must say that I have had a cortisone shot in my shoulder for bursitis...temporarily I was in excrutiating pain with that needle in my shoulder...but seconds later came my relief)!
I agree that it is far better to catch a problem in the beginning stages than after it has gotten out of hand! I hope that you get answers soon!

Aleet7

 
Old 02-06-2011, 06:34 PM   #10
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Re: Think I have IC

I think that for awhile I wasn't getting the email alert that told me I had a response to the threads, so I didn't get back with you. Thank you for your response.

For the last few weeks I have been doing better. I have not been having any frequency, but I have been having some urgency. It seems now that I can hold my bladder for quite awhile without any problems and then I stand up and boom... I have to get to a bathroom quick! Sometimes its a wonder that I make it in time. Avoiding the acidic drinks has helped decrease the urgency problem.

I won't see the doctor again until May or June.
Thanks again,

 
Old 02-07-2011, 05:22 AM   #11
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Re: Think I have IC

Hi I wonder if holding it and stretching it like that aggravates the bladder and makes the cells of the bladder swell or at least damaged a bit in some way. A relative of mine said a woman was riding a horse one time with them and she didn't want to go to the bathroom because she was embarrassed and also wanted to continute riding and the bladder burst and she died.

Last edited by sjb; 02-07-2011 at 05:24 AM. Reason: addition made

 
Old 02-07-2011, 02:04 PM   #12
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Re: Think I have IC

I think they tested that myth on a TV show awhile ago. The bladder is pretty flexible. Unless there was an obstruction like a kidney stone, I can't see that happening. I think I'd wet myself before it got to that extreme. lol

I wasn't intentionally holding it, so I'm wondering if the sensors in my bladder are either overactive or underactive? Who knows. At least the frequency has stopped. Maybe I should just make sure I visit the restroom every couple of hours or so.
Best Regards,

 
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