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Old 07-14-2003, 10:35 PM   #1
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chicabonita HB User
Question Not UTI

I have gone to the doctor 3 times because I have to pee all the time. The first time they told me I had a UTI and was given medicine and it didn't work. The second time they told me it was a bacterial infection and was given medicine and it didn't work. The third time they told me all my tests were fine and they couldn't find anything wrong with me. I still have to pee all the time, and nothing has changed since I went to the doctor the first time. What is wrong with me???

 
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Old 07-15-2003, 12:39 AM   #2
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Sounds like Interstitial Cystitis. Do a search and check out the symptoms. Sounds a lot like what you are describing!!!

 
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Old 07-16-2003, 06:55 PM   #3
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I agree with the above poster. I had the same symptoms and my doctor gave me antibiotics for a UTI, didn't have one. Then I was placed on Detrol LA, didn't help. I ended up seeing a urologist and he suggested a cystoscopy. Sure enough, I have interstitial cystitis. Go see a urologist or if you have, see another one. Be prepared for some major diet changes! Good luck.

 
Old 07-16-2003, 11:00 PM   #4
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endoIC, can you share your diet changes with us? I know basically it's anything irritating such as caffeine, chocolate, spicy foods, etc, but could you give us a more detailed list if there is one?

Thanks so much

 
Old 07-17-2003, 04:39 PM   #5
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endoIC HB User
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The first thing I cut out was the one that really made the difference, caffeine. I was urinating 20+ times a day and 2-3 a night.

Caffeine, anything acidic i.e. citrus fruits and juices, tomatoes and tomato sauce and juice, beer, alcohol, vinegar, yogurt, sport drinks, peppers, honey, horseradish, carbonated beverages, bananas, BBQ sauce, cottage cheese, cream cheese, Ibuprofen, Excedrine, soy sauce, tuna, and cucumbers just to name a few. There is a supplement called Prelief that you ingest 30 minutes before eating that cuts down on the acid. I will check back for anymore questions!

 
Old 07-18-2003, 08:18 PM   #6
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Yes, frequent urination is an early sign of IC; one I ignored for many, many years! I thought I'd just gotten into the habit of going alot while pregnant! Also, wanted to throw in this discussion that frequent urination can be a symptom of MANY MANY things; diabetes, irritable bladder, "IC", infection, urethritis, irritation (from frequent sex or lack of adequate lubrication, etc.) and those are just the ones off the top of my head. Most likely, it's not anything nearly as drastic as IC; at least I hope not. I have advanced stage of IC and in constant, SEVERE pain.
Do you have any pain too? If so, does urinating relieve that pain? Does it feel like you're urinating out razor blades instead of harmless liquid (pee)? Do you run a fever along with the times of frequency? Have you maybe increased your liquid intake or increased your caffeine intake? Are you taking any new vitamins, herbs, medications that may have a light diuretic in them you're not aware of? Were you given an antispasmodic medication along with the macrodantin? See, there's tons and tons of things to consider and please don't panic it's IC, or anything else serious!!
If you do look up symptoms of IC, be sure you educate yourself on THE diagnostic procedure of this disease! There's only ONE specific way to TRULY diagnose this disease and you do NOT have a real diagnosis of it without this test, called a Hydro=Distention. (You have a cystoscope exam while under anesthesia, after your bladder has been 'stretched' from overinflating it with water, and the water is withdrawn. ONLY then can they see the inflammation caused by this disease! This diagnostic procedure itself can also be theraputic for many!)
Start making a list of symptoms and questions now to ask the Uro at your visit. Hopefully your symptoms are very treatable and nothing serious at all; perhaps only irritation that can be easily solved by using lubrication and/or numbing gels.
Shammy24

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I'm so confused that I don't know whether to scratch my watch, or wind my butt!

Arachnoiditis, Interstitial Cystitis, Peripheral Neuropathy, DDD, MPS, FMS/CFS, Migraines, spinal tumors, Sciatica, IBS, Osteo Arthritis, Osteoporosis; at least hits the hilights!
__________________
I'm so confused that I don't know whether to scratch my watch, or wind my butt!

Arachnoiditis, Interstitial Cystitis, Peripheral Neuropathy, DDD, MPS, FMS/CFS, Migraines, spinal tumors, Sciatica, IBS, Osteo Arthritis, Osteoporosis; at least hits the hilights!

 
Old 07-18-2003, 11:20 PM   #7
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Thanks endoIC...but there's some things listed that surprised me. Tuna? Why tuna? I don't eat most of what I see listed, but I do eat bananas and yogurt. Why do you avoid those? I think they are both just too good for me in other ways to stop eating them altogether.

 
Old 07-19-2003, 02:49 AM   #8
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The reason I mentioned IC was for the simple reason that all of her tests came back negative. If she had an infection, diabetes, or urethritis it would have shown up on her urinalysis, culture and sensitivity, cytology and/or physical exam. I had a cysto with hydrodistention. The only two symptoms I had preoperatively were frequency (severe) and microscopic hematuria. Not everyone with IC will have such severe symptoms such as dysuria (painful voiding)back pain, urethral pain and so on. I have severe IC, but I only have those two symptoms. There is no set textbook symptom or symptoms to have. My op diagnosis/impression reads...

Hydrodistention of 500 cc with subsequent marked mucosal changes with severe advanced petechiae (pin point purple and red spots that are a result of hemorrhaging), cascade bleeding and Hunner's ulceration, consistent with IC. Obvious painful bladder distention. Negative urinalysis with the exception of microscopic hematuria, negative cytology, renal ultrasound and KUB.

Sure, it may not be IC, it could be small bladder capacity, which she could have evaluated through urodynamics. Many doctors do not understand or believe in IC. They don't know what causes it and they don't know how to cure it. You also mentioned that hydrodistention is the only true way to diagnose IC, that is not correct. As of today, there really is no true way to diagnose it. The two helpful and most proven ways are hydrodistention and the Parsons test, which is a potassium chloride test. It duplicates the symptoms of IC.

This woman has frequency, they gave her the two typical responses, which is what I received from my gyno and he even mentioned IC, but he wanted to try all other options first.. It needs to be further evaluated, next step should be looking at the inside if all other conservative measures have been exhausted. That is just my opinion. I am not here to give concrete medical advice, just suggestions from experience and from knowledge of urology. I wish chicabonita all the luck in the world! Please keep us posted on how you are doing!!!

[This message has been edited by endoIC (edited 07-20-2003).]

[This message has been edited by moderator1 (edited 07-28-2003).]

 
Old 07-19-2003, 02:55 AM   #9
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endoIC HB User
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Quote:
Originally posted by kellie2:
Thanks endoIC...but there's some things listed that surprised me. Tuna? Why tuna? I don't eat most of what I see listed, but I do eat bananas and yogurt. Why do you avoid those? I think they are both just too good for me in other ways to stop eating them altogether.

All of the foods I listed are acidic and can aggravate IC. Tuna, bananas and yogurt don't bother me. Everyone is different. I find that the highly acidic foods are the ones that bother me the most. Caffeine seems to be my worst enemy, so I cut it out. For everything else that I love, I either deal with the frequency or if I have Prelief handy, I'll take that. Take a look at my list and try and locate a more detailed list online. Select something you know you can live without, see what happens. I was lucky enough to cut out the substance that affected me the most. I am also taking Elmiron to build back up the protective wall in my bladder. It is certainly under control now. I will never have a normal voiding pattern, but I can live with how it is now!!!!!!

 
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