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Old 04-13-2010, 09:31 PM   #31
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Re: Can a UTI cause interstitial cystitis?

For several years I had regular, very bad UTI's. I had been on the gamut of broad spectrum antibiotics, but even after a full course of the drugs plus taking Nitrofurantioin daily I always felt a burning in my bladder and often in my urethra. I am convinced at this point, and my doctor agreed, that the bacteria basically burrowed into the wall of my bladder and I was never fully killing it off. Oddly enough, what finally killed it (and I haven't had a bladder infection in YEARS now) was Augmentin. I had never taken it because my doctor had mistakenly put me down as being allergic to Amoxicillin (one of the ingredients in Augmentin) and so my bacteria had never been exposed to that one. I got a bladder infection and took the Augmentin and within days I knew it was gone for real. The burning in my bladder was gone.

However, I now have a weakened bladder from the repeat infections and can't sleep through the night without waking up to go to the bathroom any more.

I did have good luck staving off the return of the UTI using a combination of White Tea (it was the only kind of tea that helped...green tea didn't) and a powder I bought at the local health food store...the name escapes me. But the thing that killed it was the Augmentin.

Good luck. I know how frustrating repeat bladder infections can be.

 
Old 04-14-2010, 08:29 PM   #32
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Re: Can a UTI cause interstitial cystitis?

Quote:
Originally Posted by laura86846 View Post
Both my primary care doctor and urologist said yeah, a UTI can set off IC. I'm 21 and I was diagnosed with IC like a week ago. I got a true e. coli UTI in november last year and the IC started mid-january. that was the first UTI i've ever had so even though I was ok for a month or two I feel they are somehow connected. I started taking cystoprotek yesterday, so we'll see how that works out. I have also contacted a doctor about antibiotic therapy because about 5 days after the onset of my IC I took a 3-day cipro course which made my symptoms disappear for about 2 weeks. I think I might have "biofilm" bacteria embedded between my bladder wall and the GAG layer or something, which requires a longer course of antibiotics. anyway... that's my story. our symptoms are pretty much the same. I'm miserable. I cry and wonder if I have lupus or something and this is just the beginning. Hopefully you're feeling good by now, but in case you aren't... yes I think anything that causes trauma to the bladder wall can set off all this misery!!! If by now you've found something that works, let me know. haha. I also tried hydroxyzine too, but it just made me tired.
Hi
I have the same story . One UTI 7 months ago . Since then everything is negative . My symptoms are improving but they are still there . No pain , still have frequency , but I dont wake up at night . But the main symptom is "Raw feeling in urethra" like if i feel wet all the time .
Urologist gave me Elmiron , Elavil . Help a little but not so much . Potassium test for IC was negative .
So I suffer . We all should shear our emails and then if one of us gets something that helps we can shear .

 
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Old 04-15-2010, 07:11 PM   #33
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Re: Can a UTI cause interstitial cystitis?

Quote:
Originally Posted by kristyn377 View Post
Theway you describe your symtoms is exactly like mine. Mine feels more like urethritis most of the time too. My urologist said IC patients usually feel worse as their bladder fills & then better once they empty it. But I usually feel worse right after I pee. Just like you, my symptoms don't start until after I pee first thing in the morning. It's so strange! But the symptoms are constantly changing. Sometimes it's shooting pains, sometimes achiness, sometimes it feels like pins & needles.
Omg kristyn377. After I read your first post and the rest of the posts on this thread, I HAD to register for this forum and post.

I have the same thing you guys are describing. I felt like I was going crazy, and I've been reading everything I could find on UTI's, urinary problems, IC...etc. But it seems like nothing I read is quite like my symptoms...my symptoms are not quite a UTI because there's no sign of infection (plus I've been on hella antibiotics), and not quite IC (I'm young, have no prior health problems, had no bladder issues until that UTI).

It started with a pretty bad UTI 2 months ago. The UTI symptoms themselves cleared up with antibiotics, but my urethral irritation never went away. I had 2 weeks of Cipro and 1 week of Macrobid. Still had irritation.

My symptoms are the same as yours too: I mostly feel burning irritation in my urethra, possibly bottom of my bladder. Sometimes it's not burning but more of a pinching pain, and sometimes it's higher up where my bladder is, but for the most part, it's urethra/bottom of the bladder.

I too occasionally have itching around my vagina. I know I don't have an STD. I assume it's just yeast or something from all of the antibiotics I've taken.

I too feel the worst after I pee in the morning, and I feel the very worst right after I pee. I almost don't feel pain or irritation on a full bladder, unlike IC patients, and I don't have a problem with getting up to pee at night (in fact, lying down makes my irritation/pain a lot better).

I don't think I respond to diet either. I have cut out all irritants from my diet. The only thing I seem to have responded to is spicy food, but I've always been sensative to spicy food. I've had tomato sauce, vinigrette, orange juice, and it hasn't really done anything. Other days, I've had water and bread, and I've felt like I was sitting on a flame.

One thing that might have helped me a little bit is D-Mannose, but I'm not sure. D-Mannose is a supplement that supposedly binds E coli and flushes them out. I'm not sure if it actually helped or if my symptoms are just getting worse...can't test it out again because I ran out and it's really expensive and hard to find.


I also wanted to tell you that I've had this same experience before...about a year ago. Same thing, I had a confirmed UTI (Ecoli). Some symptoms persisted despite antibiotics. About a month or two later, had another UTI, again confirmed as Ecoli. Symptoms persisted. Went on for about 3 more months, during which there were no signs of infection in my urine. I was given low dose Macrobid to take after I have sex (my UTI's were sex triggered) and I also had a week's worth of therapy due to an unrelated surgery. And finally after like 4-5 months after the initial UTI it just went away. Coffee, alcohol, acids, hell even Redbull...nothing bothered me.


I'm trying to get to a uro right now to get some answers (hard time getting an appointment with one without insurance). If I find out anything I'll get back to you guys. I also am interested in hearing anything that has helped you guys because I would really like to kick this stupid whatever it is to the curb.

Best wishes.

 
Old 04-15-2010, 07:30 PM   #34
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Re: Can a UTI cause interstitial cystitis?

Quote:
Originally Posted by kirstee View Post
Has your doctor explored the possibility of urine crystals which are irritating the lower end of your bladder and uretha?
Kirstee, how do they diagnose urine crystals? I'm curious because I do have a family history of kidney stones, and my problems are mainly the lower bladder/urethral area.

Quote:
Originally Posted by EagleRiverDee View Post
I am convinced at this point, and my doctor agreed, that the bacteria basically burrowed into the wall of my bladder and I was never fully killing it off. Oddly enough, what finally killed it (and I haven't had a bladder infection in YEARS now) was Augmentin.
EagleRiverDee, may I ask you during your experience with this if you've ever had negative urine results?

I've had this same thing about a year ago (UTI followed by symptoms that won't go away), and they seem to go away when I had an unrelated surgery...to which I was prescribed Amoxicillin to prevent infection. If Augmentin worked for you, and Amoxicillin worked for me once before...then HMMM. We might be onto something here.

My biggest issue is my recent urine results came up negative.

 
Old 04-15-2010, 10:29 PM   #35
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Re: Can a UTI cause interstitial cystitis?

Quote:
Originally Posted by asgopt View Post
EagleRiverDee, may I ask you during your experience with this if you've ever had negative urine results?

I've had this same thing about a year ago (UTI followed by symptoms that won't go away), and they seem to go away when I had an unrelated surgery...to which I was prescribed Amoxicillin to prevent infection. If Augmentin worked for you, and Amoxicillin worked for me once before...then HMMM. We might be onto something here.

My biggest issue is my recent urine results came up negative.
Yes! I had multiple "negative" tests where the doctors said nothing was wrong...and then lo and behold in a week or two I had a full blown UTI that did test positive. During the dormant periods my bladder would burn and my urethra always felt a burning feeling too. It drove me nuts, and was so uncomfortable. I could press on my bladder through my lower abdomen and it always hurt. Until the Augmentin. I couldn't believe that after being on all the "big guns" (Cipro, Macrobid, etc) that it was Augmentin that knocked it out. In the course of two years I was fighting a UTI every other month minimum. Then the Augmentin...and haven't had a UTI in probably 7 years now.

Oh...have to add this, have no idea if it's relevant. When I was in my "dormant" stage, when I peed the last part of the pee always had a cloudy film to it. I could almost tell how soon I'd have a UTI just based on how that looked. That went away after I finally got rid of the UTI for good.

Last edited by EagleRiverDee; 04-15-2010 at 10:31 PM. Reason: Added info

 
Old 04-15-2010, 10:34 PM   #36
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Re: Can a UTI cause interstitial cystitis?

Quote:
Originally Posted by asgopt View Post
Omg kristyn377. After I read your first post and the rest of the posts on this thread, I HAD to register for this forum and post.

I have the same thing you guys are describing. I felt like I was going crazy, and I've been reading everything I could find on UTI's, urinary problems, IC...etc. But it seems like nothing I read is quite like my symptoms...my symptoms are not quite a UTI because there's no sign of infection (plus I've been on hella antibiotics), and not quite IC (I'm young, have no prior health problems, had no bladder issues until that UTI).

It started with a pretty bad UTI 2 months ago. The UTI symptoms themselves cleared up with antibiotics, but my urethral irritation never went away. I had 2 weeks of Cipro and 1 week of Macrobid. Still had irritation.

My symptoms are the same as yours too: I mostly feel burning irritation in my urethra, possibly bottom of my bladder. Sometimes it's not burning but more of a pinching pain, and sometimes it's higher up where my bladder is, but for the most part, it's urethra/bottom of the bladder.

I too occasionally have itching around my vagina. I know I don't have an STD. I assume it's just yeast or something from all of the antibiotics I've taken.

I too feel the worst after I pee in the morning, and I feel the very worst right after I pee. I almost don't feel pain or irritation on a full bladder, unlike IC patients, and I don't have a problem with getting up to pee at night (in fact, lying down makes my irritation/pain a lot better).

I don't think I respond to diet either. I have cut out all irritants from my diet. The only thing I seem to have responded to is spicy food, but I've always been sensative to spicy food. I've had tomato sauce, vinigrette, orange juice, and it hasn't really done anything. Other days, I've had water and bread, and I've felt like I was sitting on a flame.

One thing that might have helped me a little bit is D-Mannose, but I'm not sure. D-Mannose is a supplement that supposedly binds E coli and flushes them out. I'm not sure if it actually helped or if my symptoms are just getting worse...can't test it out again because I ran out and it's really expensive and hard to find.


I also wanted to tell you that I've had this same experience before...about a year ago. Same thing, I had a confirmed UTI (Ecoli). Some symptoms persisted despite antibiotics. About a month or two later, had another UTI, again confirmed as Ecoli. Symptoms persisted. Went on for about 3 more months, during which there were no signs of infection in my urine. I was given low dose Macrobid to take after I have sex (my UTI's were sex triggered) and I also had a week's worth of therapy due to an unrelated surgery. And finally after like 4-5 months after the initial UTI it just went away. Coffee, alcohol, acids, hell even Redbull...nothing bothered me.


I'm trying to get to a uro right now to get some answers (hard time getting an appointment with one without insurance). If I find out anything I'll get back to you guys. I also am interested in hearing anything that has helped you guys because I would really like to kick this stupid whatever it is to the curb.

Best wishes.
Hi
As I say before my symptoms are just like yours . I have visited a good URologist and he said it is IC . I told him I have no flares , food doesn't bother me and I don't have pain and don't get up at night . I have constant irritation in my urethra like " raw feeling " and i have to go more frequently to pee . He put me on Elmiron and Elavil and it is helping . especially Elavil .
I took it for one month to help . I am not like normal yet , but a least I have hope and good days .
It seems like Soda helps me and not bothers me .

People on some websites will tell you immediately that you have IC for sure . Don't believe it. I had Potassium test and It was negative . I didn't do cystocopy cause there is a risk of infection . Our situation is a mystery .
One UTI and so much problems .

Last edited by Administrator; 02-20-2012 at 06:32 PM.

 
Old 04-16-2010, 07:10 AM   #37
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Re: Can a UTI cause interstitial cystitis?

Quote:
Originally Posted by ana123 View Post
Hi
As I say before my symptoms are just like yours . I have visited a good URologist and he said it is IC . I told him I have no flares , food doesn't bother me and I don't have pain and don't get up at night . I have constant irritation in my urethra like " raw feeling " and i have to go more frequently to pee . He put me on Elmiron and Elavil and it is helping . especially Elavil .
I took it for one month to help . I am not like normal yet , but a least I have hope and good days .
It seems like Soda helps me and not bothers me . Do not read any posts in IC-network . those women are crazy . they will tell you staff that you have IC for sure . I had Potassium test and It was negative . I didn't do cystocopy cause there is a risk of infection . Our situation is a mystery .
One UTI and so much problems .
Hi ana123.

I have been on <some of those websites> and to put it mildly, it scared me. But still, I have always felt that none of the people's stories "fit" me. They all seem to have extreme pain, extreme frequency, pain on bladder filling, and respond to diet. And they all seem to have cobormid conditions like hysterectomy, arthritis, IBS. I don't even have allergies. But at the same time I have chronic irritation with no infection, something very characteristic of IC.

I'm also reluctant to get a cysto because I get UTI's easily. It's brave of you to do a potassium test, and I know we are different people, but since our cases are so similar, I'm guessing a potassium test would be negative for me too. When I have my insurance situation figured out, I'll probably ask for that test to be performed as well.

Our cases are certainly not normal since most people who have a UTI don't continue to fight it for months. I feel like if we have IC, we have a very specific type of IC. Or it might not be IC at all...it might just be a easily penetrable bladder wall so that bacteria can easily burrow in and cause damage. Who knows.


I'm really intrigued by EagleRiverDee's comment, so I'm going to go back to my doctor and ask for an Amoxicillin or Augmentin prescription. I really feel like that's what finally resolved this problem for me the last time I had it, so it's worth at least a try this time.

Last edited by Administrator; 02-20-2012 at 06:34 PM.

 
Old 04-16-2010, 07:26 AM   #38
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Re: Can a UTI cause interstitial cystitis?

Quote:
Originally Posted by EagleRiverDee View Post
Oh...have to add this, have no idea if it's relevant. When I was in my "dormant" stage, when I peed the last part of the pee always had a cloudy film to it. I could almost tell how soon I'd have a UTI just based on how that looked. That went away after I finally got rid of the UTI for good.

May I ask if it was an oily kind of film, or a cloudy kind of film?

For me, the first sign of a full-blown UTI is my urine starts to smell bad (well, worse than urine normally smells). My urine hasn't smelled bad since the UTI 2 months ago, but then again, I haven't had a full-blown UTI again.

The last time I had this problem, I also had recurrent UTI's (all Ecoli) in a short amount of time. I think it was confirmed twice in urine culture. But for 5 months I had constant irritation and I kept going back to the doctor but my tests would be negative for infection, aside from those two UTI's. So our experiences are very similar. I feel like I'm sitting on an eggshell, just waiting for the real UTI to come back.


I have another question for you (sorry if I'm pestering, just curious!). When you had your full-blown UTI's, did they respond to Macrobid or Cipro? All my urine cultures showed I had EColi that wasn't resistant to anything, but it wasn't until I took Amoxicillin that it went away.

 
Old 04-16-2010, 10:43 AM   #39
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Re: Can a UTI cause interstitial cystitis?

Quote:
Originally Posted by asgopt View Post
May I ask if it was an oily kind of film, or a cloudy kind of film?

For me, the first sign of a full-blown UTI is my urine starts to smell bad (well, worse than urine normally smells). My urine hasn't smelled bad since the UTI 2 months ago, but then again, I haven't had a full-blown UTI again.

The last time I had this problem, I also had recurrent UTI's (all Ecoli) in a short amount of time. I think it was confirmed twice in urine culture. But for 5 months I had constant irritation and I kept going back to the doctor but my tests would be negative for infection, aside from those two UTI's. So our experiences are very similar. I feel like I'm sitting on an eggshell, just waiting for the real UTI to come back.


I have another question for you (sorry if I'm pestering, just curious!). When you had your full-blown UTI's, did they respond to Macrobid or Cipro? All my urine cultures showed I had EColi that wasn't resistant to anything, but it wasn't until I took Amoxicillin that it went away.
Cloudy white. I never did know what it was but it was only present during that time period where I still had that horrible bladder pain but was testing negative for infection.

My UTI's always responded, to a point, to whatever antibiotic they gave me, but I could always tell if it was just holding it at bay or actually curing. The big gun's like Cipro and Macrobid would make it where peeing wasn't excruciating, and they would reduce the bacteria to the point where I would test negative, but the bladder pain never went away. When they put me on Augmentin, I knew when the course of treatment was up that it WORKED. No more bladder pain. NO more irritation of the urethra.

I think we are on to something with the Amoxicillin thing, but since I'm not a medical professional I have no idea what. Maybe Amoxicillin does a better job penetrating the walls of the bladder? Maybe it does better in an acidic environment than other drugs? No idea.

 
Old 04-24-2010, 10:18 AM   #40
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Re: Can a UTI cause interstitial cystitis?

Quote:
Originally Posted by asgopt View Post
Omg kristyn377. After I read your first post and the rest of the posts on this thread, I HAD to register for this forum and post.

I have the same thing you guys are describing. I felt like I was going crazy, and I've been reading everything I could find on UTI's, urinary problems, IC...etc. But it seems like nothing I read is quite like my symptoms...my symptoms are not quite a UTI because there's no sign of infection (plus I've been on hella antibiotics), and not quite IC (I'm young, have no prior health problems, had no bladder issues until that UTI).

It started with a pretty bad UTI 2 months ago. The UTI symptoms themselves cleared up with antibiotics, but my urethral irritation never went away. I had 2 weeks of Cipro and 1 week of Macrobid. Still had irritation.

My symptoms are the same as yours too: I mostly feel burning irritation in my urethra, possibly bottom of my bladder. Sometimes it's not burning but more of a pinching pain, and sometimes it's higher up where my bladder is, but for the most part, it's urethra/bottom of the bladder.

I too occasionally have itching around my vagina. I know I don't have an STD. I assume it's just yeast or something from all of the antibiotics I've taken.

I too feel the worst after I pee in the morning, and I feel the very worst right after I pee. I almost don't feel pain or irritation on a full bladder, unlike IC patients, and I don't have a problem with getting up to pee at night (in fact, lying down makes my irritation/pain a lot better).

I don't think I respond to diet either. I have cut out all irritants from my diet. The only thing I seem to have responded to is spicy food, but I've always been sensative to spicy food. I've had tomato sauce, vinigrette, orange juice, and it hasn't really done anything. Other days, I've had water and bread, and I've felt like I was sitting on a flame.

One thing that might have helped me a little bit is D-Mannose, but I'm not sure. D-Mannose is a supplement that supposedly binds E coli and flushes them out. I'm not sure if it actually helped or if my symptoms are just getting worse...can't test it out again because I ran out and it's really expensive and hard to find.


I also wanted to tell you that I've had this same experience before...about a year ago. Same thing, I had a confirmed UTI (Ecoli). Some symptoms persisted despite antibiotics. About a month or two later, had another UTI, again confirmed as Ecoli. Symptoms persisted. Went on for about 3 more months, during which there were no signs of infection in my urine. I was given low dose Macrobid to take after I have sex (my UTI's were sex triggered) and I also had a week's worth of therapy due to an unrelated surgery. And finally after like 4-5 months after the initial UTI it just went away. Coffee, alcohol, acids, hell even Redbull...nothing bothered me.


I'm trying to get to a uro right now to get some answers (hard time getting an appointment with one without insurance). If I find out anything I'll get back to you guys. I also am interested in hearing anything that has helped you guys because I would really like to kick this stupid whatever it is to the curb.

Best wishes.
Yep! Everything you say here is just the same as what I've got going on! Whatever's wrong with you, the same thing is wrong with me too! I'll certainly post anything on here that I find helps, but as of now, I still have not found a cure...

 
Old 04-24-2010, 10:30 AM   #41
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Re: Can a UTI cause interstitial cystitis?

The fact that so many of you have said that Augmentin/Amoxicillin has heped you really interests me. My symptoms & mostly everyone else's symptoms started with a real, positively identified infection, and this means that it's extremely likey that we are all still dealing with some sort of low-level, or hidden infection.

Laura...I'm curious to hear if you've gotten the results of your urine broth culture yet? I'm really thinking of having this culture done since it's supposed to pick up any infections that normal urine cultures do not. If the awful symptoms I've been dealing with for over a year and a half now could be eliminated with Augmentin or some other antibiotic that I have not tried yet, that would be fantastic!

 
Old 04-24-2010, 11:28 PM   #42
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Re: Can a UTI cause interstitial cystitis?

Hey guys! I wanted to come back on here and give you an update.

So rather than go find a uro and pay $2000+ dollars out of pocket, I decided to give antibiotics another try.

I didn't get amoxicillin, but I did get cephalexin, which is similar. I took 500 mg a day 4 times a day for about 2 weeks.

I had mixed results, but overall, my condition is better, although not completely cured.

When I went in to get the prescription, I had pretty constant and noticeable burning/irritation, with occasional more extreme mild pain and dull ache in my bladder.

For the most part, the dull ache and mild pain is gone. The irritation is decreased, but still present, especially towards the end of the day until I go to bed. However, for the first time since my UTI, I have experienced several hours where I don't feel anything...like normal, although the irritation returns. I've also had 1-2 days where I did feel pretty irritated like before taking cephalexin. One of those days I ate/drank a lot of acidic food and caffeine so that could be the reason. I also still get like a sharp pain in the middle of my bladder that lasts a second. It happens more frequently the 20 minutes after I have used the restroom. Antibiotics don't seem to have decreased this symptom.

I also purposefully skipped a few doses to test if it's the antibiotic, and I seemed to feel a bit worse until I took the next dose.


So in conclusion, I do believe the cephalexin is doing something, although not quite enough (or perhaps I'm not taking it long enough, or my skipping doses is not a good idea). In 2 days I'm going back and I'm going to ask for a long-term antibiotic regimen, or some heavier a**-kicking antibiotics.

I really truely believe that whatever I have is somehow related to the UTI I had, and bacteria. I may have a mild form of something like IC, and bacteria could just be making it act up. I'd like to try to control any infections because if it's IC, I would like my bladder to rebuild itself without having to take Elmiron and have my hair fall out (that might be vain, but I am fairly young and a girl and we love our hair).

If I get more antibiotics, I will try to remember and come back and let you guys know how it goes. Since nobody can tell us what is going on, I feel like we all have to volunteer ourselves as guinea pigs.

 
Old 04-25-2010, 11:44 PM   #43
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Re: Can a UTI cause interstitial cystitis?

Quote:
Originally Posted by asgopt View Post
Hey guys! I wanted to come back on here and give you an update.

So rather than go find a uro and pay $2000+ dollars out of pocket, I decided to give antibiotics another try.

I didn't get amoxicillin, but I did get cephalexin, which is similar. I took 500 mg a day 4 times a day for about 2 weeks.

I had mixed results, but overall, my condition is better, although not completely cured.

When I went in to get the prescription, I had pretty constant and noticeable burning/irritation, with occasional more extreme mild pain and dull ache in my bladder.

For the most part, the dull ache and mild pain is gone. The irritation is decreased, but still present, especially towards the end of the day until I go to bed. However, for the first time since my UTI, I have experienced several hours where I don't feel anything...like normal, although the irritation returns. I've also had 1-2 days where I did feel pretty irritated like before taking cephalexin. One of those days I ate/drank a lot of acidic food and caffeine so that could be the reason. I also still get like a sharp pain in the middle of my bladder that lasts a second. It happens more frequently the 20 minutes after I have used the restroom. Antibiotics don't seem to have decreased this symptom.

I also purposefully skipped a few doses to test if it's the antibiotic, and I seemed to feel a bit worse until I took the next dose.


So in conclusion, I do believe the cephalexin is doing something, although not quite enough (or perhaps I'm not taking it long enough, or my skipping doses is not a good idea). In 2 days I'm going back and I'm going to ask for a long-term antibiotic regimen, or some heavier a**-kicking antibiotics.

I really truely believe that whatever I have is somehow related to the UTI I had, and bacteria. I may have a mild form of something like IC, and bacteria could just be making it act up. I'd like to try to control any infections because if it's IC, I would like my bladder to rebuild itself without having to take Elmiron and have my hair fall out (that might be vain, but I am fairly young and a girl and we love our hair).

If I get more antibiotics, I will try to remember and come back and let you guys know how it goes. Since nobody can tell us what is going on, I feel like we all have to volunteer ourselves as guinea pigs.
Hi
I told you I have the same syptoms as you . I have tried different antibiotics
. I thought that they are helping , but they didn't help at all . One Urologist said I might have IC another said I don't . So I am on Elmiron now and Elavil .
I do not have any hair loss . The opposite I noticed I have less hair on my hair braush after combing . The Elmiron and Elavil are helping me . For example today I felt totaly normal . The urgency is gone , and I can hold at least for half an hour until I go pee . The frequency is decreased too . Some days I go to pee normaly every 3 hours . The only thing is left is the irritation in urethra which is much better and some days disappear at all .
In my opinion if they didn't find infection in urine culturs so you don't have it , and long term antibiotics actually can weaken your body defences .
But I undestand the suffering so try everything that can lead to total cure.
Just do not fear from Elmiron , the hair loss happens only in 3% of people .


<don't listen if some people> tell you to watch your diet , for me it doesn't make a difference at all . I drink cola , coffe and feel fine , and I don't have bladder pain at all , It was gone with the UTI.
I am only one month on Elmiron and Elavil .
I also had one Heparin inslation through catheter in the Urologist office and It did help. I didn't do cystoscopy since it has risk of infection and I thought that I would pay a lot of money for this test and he will still give me Elmiron with the test or without so why bother ?
I also did X- rays which were normal and ultrasound . Those tests cannot harm you so I was Ok with them. You might want to do ultrasound to see if you don't have other conditions like uterine polyps or cysts and to check for Skene gland cyst in the Urethra. If you don't have good insurance go to universities which have ultrasound degree and offer free ultrasounds. They will have students doing that but they always have an MD superviousor.
If you have any questions please post your questions . PS I am 27 , so I am young too.

Last edited by Administrator; 02-20-2012 at 06:37 PM.

 
Old 05-19-2010, 02:57 PM   #44
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Join Date: Mar 2010
Posts: 15
laura86846 HB User
Re: Can a UTI cause interstitial cystitis?

Hey guys,

I have some answers, finally. Turns out my CD57 count is 57 (normal is 60-360) so it's highly likely I have Lyme, and a blood smear suggested a co-infection of some sort. No other tests showed problems (thyroid, vitamin D ok). Sure enough, I started my Lyme protocol about 5 days ago (biaxin and plaquenil) and it's WORKING!!! YES, my bladder feels almost normal sometimes. ALMOST NORMAL!! I can now go for about 2 and a half hours without peeing, and no discomfort at times. HUGE improvement. Some people take 3 months to feel any improvement.

What's weird is biaxin or plaquenil alone don't help the symptoms hugely, it's only when they're taken together. One problem I have is the quinine is hurting my stomach, but if I can't get used to it I can receive injections a few times a week. So, I'll be on this regimen for at least 3 months.

This is so odd, because I have had NO other Lyme symptoms whatsoever. I got 2 tick bites in Arkansas at age 7 (I'm now 21), and have always been avidly outdoorsy, but never do I remember a tick bite w/ fever or a rash. I don't get sick easily, have always been a great athlete and have no other chronic health issues. Also, I got my first bladder infection just a few weeks before my symptoms really took off; maybe the damaged bladder made for a nice place for the tick pathogens to thrive?? so I really hope this is the ticket for me, and it's the first thing so far that seems highly promising. I'd highly suggest exploring this route if you're suffering from IC for no apparent reason.

wishing you all good luck!!!!!!!!

 
Old 05-20-2010, 05:01 AM   #45
Junior Member
(female)
 
Join Date: May 2010
Posts: 13
AmyW88 HB User
Re: Can a UTI cause interstitial cystitis?

Hi everyone,

I am suffering from a similar thing and it's driving me insane. I had cystitis which turned into a kidney infection 11 weeks ago, and though the infection is gone according to the numerous urine dipsticks, cultures and blood tests I've had, I still feel like I need to pee ALL the time. I've tried 4 different anti-biotics including augmentin with no relief, cranberry tablets, my urologist has me on vesicare incase it's an overactive bladder. I had an ultrasound on my bladder and kidneys last week - nothing wrong there. Yesterday I had a cystoscopy under general anaesthetic and had a bladder biopsy taken. When I came round the urologist told me he couldnt see anything wrong ie polyps or inflammation, which sent me into a bit of a spin - I was praying that there'd be something obvious and fixable.

All the way through I've not had any pain (until now because of having the cystoscopy) so I'm pretty sure it's not IC. It is literally just the feeling that I need to empty my bladder, like that tensing of the urethra you have when you're holding it in. For 11 weeks. The thing that's confusing me the most is that my urologist is saying he doesn't think it's anything to do with the infection I've had, but I was totally normal before. I can't see how I can be fine, get a uti that turns to a kidney infection, and still have the same (and only) symptom I had from the day it started without them being related. I'm waiting for the biopsy result but am not holding out much hope.

I'm now looking into herbal remedies as I'm close to not being able to cope with this. A herbalist I've spoken to has recommended Waterfall D-Mannose, something called Wee Tea, and some strong pro-biotics. Does anyone have any advice on whether these have helped you? Or even just heard another urologist that believes severe cystitis can cause this problem for this long?

I'm really running out of patience as this is ruining my life - I'm supposed to be taking my Uni final exams next week and have had to write my dissertation in complete distress. It's already ruined my degree, threatening my relationship and I have no social life.

Please, if anyone can give me some ideas, or just reassurance it would really help.

Thankyou,
Amy

 
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