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07-05-2007, 05:43 AM #1ICN Member
- Join Date
- Nov 2006
- Posts
- 34
recurrent bladder infections and IC
My dr will not say for sure that i have IC .. her excuse is she hates to have to give me that diagnos but, i am ready for some help with this.. Today , think i have the 4th infection in the last 4 months , i have been on antbo. more than i have been off of them.. and they just don't clear it up or, it's coming back as soon as i am off them.. Does anyone , else with IC have this problem with the infections ?? I am at the end of my very short rope.. HELP ..
karen
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07-05-2007, 05:45 AM #2
Hi Karen,
From the time I was 16 till I was dx'd at the age of 20, I had a "UTI" every month. Yeah right! They weren't UTI's. They felt like they'd clear up but then a week or two later, bam, I'm on the toilet with wicked bladder spasms.
I'd find a new Urologist if I were you who is willing to do some more invasive testing for IC, like a hydro/cysto or maybe who will rule out other conditions.
Hugs,
JessMommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!
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07-06-2007, 12:15 AM #3
Were all four of your infections confirmed with lab tests? I've had times in the past when just based on my symptoms I'm told it's a bladder infection and given antibiotics. I found out later that the lab results came back that no infection was present. It was just that my IC symptoms mimic the symptoms of an infection.
I really hate to take medication unnecessarily and especially worry about taking antibiotics needlessly. So now I often wait for the lab results to confirm an actual infection before beginning antibiotocs. Also, the lab results can tell the doctor exactly which bacteria is causing the infection and the doctor can then prescribe the best type of antibiotic for that type of bacteria.
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07-06-2007, 12:58 AM #4
I'm the same way as Shell, I thought that I was getting infections all the time. I would go to the dr and they would do a dip stick test and it would not show an infection but there would be a little bit of blood (this would usually be around the time of my period) and they would say that I had the symptoms and treat it as an infection with antibiotics.
Now that I know my body I realize these were just flares because I always flare the worst during my period. I have only had one confirmed infection in my life and that was when I was in college, all the others have come back negative.Christine
I have been diagnoised for 2 1/2 years. I have tried every oral med as well as rescue instills and DMSO.
1st hydro 4/07 which showed no visible signs of IC but I had tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. I am still feeling the effects of the hydro two weeks later.
This 2nd hydro proved that because no treatments have helped me that my IC has progressed
Am being seen by Dr. Hanno's office in Philly
None of my medicine or treatments are important anymore. One of our best IC sisters Barb has been taken from us too early. She was such a great friend to me, I feel like there is a part of my heart that will always be empty now that she is gone.
Proud wifey of Shane, mommy of Griffin, and step-mom to Logan, Gage and Miranda
Also proud new mommy to the best Bullmastiff puppy on earth


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07-06-2007, 02:16 AM #5
I was the same way, then one time they put me on a certain antibotics (can't remember which of course, since this was too many years ago) and it made my bladder go into spasms!!) so off they sent me to a uro and at this time I was back and forth to the uro many, many times already (i think 5 years by this time) so after some more testing my doctor was at a lost and he talked to another doctor in the practice who was the "top doctor who knew about IC" and he said that I might have this but that I was just too young for it-- at the time I was 32 - I am now 47. Sure enough after having a hydro/cysto that is what I have. At that time they didn't have the Elmiron out so all they did for me was the DMSO treatments which helped me quite a bit (even put me in remission); after awhile the Elmiron did come out I think in 1997 which I have been on since and I really haven't had any problems since, sure, I have had some UTI's some were the real things some weren't but we dealt with them.
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07-09-2007, 10:54 AM #6
Yes, I'm 26 and I've had problems with "bladder infections" when I was a child and starting again from the time I was 19 until now. There have been times when it really was an infection, bacteria was found present. Not until last year did I get hit with what I thought was an infection and every time I went back to the doctor they'd give me another antibiotic, the antibiotic would make me flare worse and when they'd send my urine out there would be nothing wrong!!!!! If I was you I'd ask to have your urine sent out for a culture. Also I would look into seeing an actual urologist you specializes in IC. It took me a lot of visits before I found someone who cared. Hang in there. I think there's a link on this site for searching for a urologist too.
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07-09-2007, 12:38 PM #7
Around the time I was diagnosed with IC I also started having very frequent TRUE bladder infections (confirmed by culture). It's definitely possible to have recurrent UTIs and IC and it's possible to have doctors treating you for infections that aren't really infections. Have they cultured each of these to make sure they truly are infections?
Mine were cleared up by taking one antibiotic pill after intercourse. I haven't had one since we started doing that.
Kim
Diagnosed August 2001
Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)
Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)
My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.
*****************************
“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy
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07-09-2007, 04:47 PM #8
Yes my doc gave me an antibiotic to take after intercoarse and I haven't had a UTI yet, it's been about 9 months. That's a record for me. You should ask your doctor about taking a low dose antibiotic. I really think it helps
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