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   Can a UTI cause interstitial cystitis? (Interstitial Cystitis (IC) board)

27th December 2008
I've been miserable for 4 months now. I had a UTI that started Aug 25th. 1 week of a herbal UTI remedy followed by 1 week of Nitrofurantoin antibiotic eliminated the signs of infection from my urine, but did not completely get rid of my symptoms. Since then I have tried more antibiotics (Cipro, Bactrim, Doxycycline), and 2 and 1/2 months of avoiding bladder-irritating foods, with no permanent relief. It will really improve for a week or 10 days. I'll think I'm finally going to be healthy again, and then my symptoms will get worse. I have had numerous tests done including: urine cultures, a bladder ultrasound, pelvic exams, a CT-scan, a cystoscopy, a MRI, a vaginal culture, and blood work. All tests have found nothing abnormal except for E Coli in my urine with the initial UTI on Aug 25th, blood in 2 of my urine samples since then, a sensitive nerve ending found during my pelvic exam, and dilated pelvic veins found by my MRI. Besides antibiotics, I have also tried detrol LA, flomax, hydroxyzine (antihistamine), and UTIRA-C (urinary antispasmodic/analgesic). Nothing helps. I have tried herbal remedies including the initial week of "bladder comfort" herbal pills, marshmallow leaf and corsilk tea, shatavari root, cod liver oil, probiotics, hyaluronic acid, chondroitin, quercetin, bromelain, and colostrum. Initially when I started some of these extra supplements, I think I took too many & they made me sick to my stomach. So I have just started taking them again yesterday but only 1 pill a day of hyaluronic acid, chondroitin, quercetin, bromelain & colostrum. I am running out of options, ideas, and hope. The urologist I have been seeing wants to put me on an antidepressant and Elmiron if i do not get better by Jan 15th. The urogynecologist I have been seeing wants to do another cystoscopy on me Jan 22nd and then possibly put me on Elmiron. I am worried that Elmiron may not help and will also make my hair fall out. I am only 26 years old, and I was perfectly healthy before I got the UTI on Aug 25th. Has anyone else had a UTI that led to interstitial cystitis? If so, what medications helped if any? Is this something I wil have to live with for the rest of my life? Or is there any hope that it will go away and not come back? My symptoms are that I feel like I have to pee all the time--like my bladder is always full. And sometimes I get shooting or jabbing pains in my urethra, especially right after I pee. Anyone else have similar symptoms, or have IC develop after a UTI? I'm miserable! I want my life back!
22nd January 2009
I have IC also. I've had the symptoms since Oct '07 but wasn't diagnosed until May '08. Since May I've been on Elmiron and finally feel like I'm getting my life back! The IC took over my life when I didn't know what was causing all the symptoms that you described! It took the Elmiron about 2 months before I started feeling real results. Also my hair did thin out but not so much that I needed a wig or anything(most women do not experience hair loss but a small percentage do). I also take pyridium(Azo standard over the counter med) for the burning. I also take Benadryl at night because it is known to take the edge off the pelvic pain so that I can sleep. Many of my fellow IC friends take an Antidepressant also to block pain. I keep to the IC diet and take my meds and now I can function like normal again. Although they say it is incurable there are many that go into remission without any IC symptoms. I wish you the best in getting better.
Aleet7
4th March 2010
[QUOTE=kristyn377;3830530]I've been miserable for 4 months now. I had a UTI that started Aug 25th. 1 week of a herbal UTI remedy followed by 1 week of Nitrofurantoin antibiotic eliminated the signs of infection from my urine, but did not completely get rid of my symptoms. Since then I have tried more antibiotics (Cipro, Bactrim, Doxycycline), and 2 and 1/2 months of avoiding bladder-irritating foods, with no permanent relief. It will really improve for a week or 10 days. I'll think I'm finally going to be healthy again, and then my symptoms will get worse. I have had numerous tests done including: urine cultures, a bladder ultrasound, pelvic exams, a CT-scan, a cystoscopy, a MRI, a vaginal culture, and blood work. All tests have found nothing abnormal except for E Coli in my urine with the initial UTI on Aug 25th, blood in 2 of my urine samples since then, a sensitive nerve ending found during my pelvic exam, and dilated pelvic veins found by my MRI. Besides antibiotics, I have also tried detrol LA, flomax, hydroxyzine (antihistamine), and UTIRA-C (urinary antispasmodic/analgesic). Nothing helps. I have tried herbal remedies including the initial week of "bladder comfort" herbal pills, marshmallow leaf and corsilk tea, shatavari root, cod liver oil, probiotics, hyaluronic acid, chondroitin, quercetin, bromelain, and colostrum. Initially when I started some of these extra supplements, I think I took too many & they made me sick to my stomach. So I have just started taking them again yesterday but only 1 pill a day of hyaluronic acid, chondroitin, quercetin, bromelain & colostrum. I am running out of options, ideas, and hope. The urologist I have been seeing wants to put me on an antidepressant and Elmiron if i do not get better by Jan 15th. The urogynecologist I have been seeing wants to do another cystoscopy on me Jan 22nd and then possibly put me on Elmiron. I am worried that Elmiron may not help and will also make my hair fall out. I am only 26 years old, and I was perfectly healthy before I got the UTI on Aug 25th. Has anyone else had a UTI that led to interstitial cystitis? If so, what medications helped if any? Is this something I wil have to live with for the rest of my life? Or is there any hope that it will go away and not come back? My symptoms are that I feel like I have to pee all the time--like my bladder is always full. And sometimes I get shooting or jabbing pains in my urethra, especially right after I pee. Anyone else have similar symptoms, or have IC develop after a UTI? I'm miserable! I want my life back!

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.
6th March 2010
No unfortunately I have not yet been able to cure myself. I've been through so much, and I've been dealing with this for over a year and a half now. I've spent thousands of dollars on doctors and drugs. I would say that overall I am better than I was when this began. But I am certainly not cured. I will feel pretty good, with only mild symptoms for a few days, or even up to 10 days. But I always end up feeling worse again. It's so strange that it comes and goes. One day I will feel almost completely fine, and the next day I am miserable. And I can't find any cause for it. Diet seems to have nothing to do with my symptoms. I've tried at least 6 different diets for long periods of time with no relief. I've tried several prescription drugs, which all did nothing, or made me feel even worse (this included a 12-week course of doxycycline antibiotic in case there was ANY infection left that needed to be cleared up). I am now seeing a naturopathic doctor for this issue, as conventional medicine and doctors have gotten me nowhere. I was seeing a very good urologist for a while, but he ended up saying that maybe I have an atypical form of IC (symtoms and cystoscopy just don't match what he sees in typical IC patients). He prescribed me Elimron & Amitriptyline, and that was all he could do for me after all other tests showed nothing wrong. Anyway, I've been wokring with a naturopathic doc now and trying several different supplements, but nothing has cured me yet. I have stopped taking birth control pills because I noticed that they seemed to make my syymptoms worse. Stopping them has made my symptoms a bit better overall, but it created new problems for me. My hormones are all over the place now, and my hair fell out, and I've had bad acne. I am taking symplex-f to balance my hormones now, which at least made my hair stop falling out, and has helped to make me a bit more "normal" hormonally. I've had a nutritional evaluation done, which looked at various vitamin, mineral, enzyme, and co-factor levels in my blood and urine. That found that I had basically no folic acid or B-vitamins in my body and my magnesium was low, so I am on Metanx now (a prescription form of folic acid & B-vitamins), along with extra B-6, B-12, and magnesium supplements. I am also on several supplements that are supposed to help with nerve pain (but can take up to a year to work), including alpha-lipoic acid, inositol, and acetyl-L-carnitine. L-Arginine and quercetin are others I'm taking that I have heard helped some women with IC, and I'm still on the osteo-biflex that my urologist recommended for the bladder lining. Oh, and I take 5,000IU/day of vitamin D3 and 200mg of 5-HTP/day which my naturopathic doc said may help my mood, and melatonin at night to help me sleep. So I take handfuls of vitamins 3 times a day, and I'd say 50% of the time I feel well enough to function normally, 40% of the time I feel pretty crappy but manage to get through my day, and 10% of the time I feel completely miserable and just want to sleep. I also recently had food allergy testing done because I started having bad stomach aches and other digestive symptoms. I found out that I am allergic to string beans, pinto beans, and soybeans. So I have started avoiding these foods, and my digestive symptoms have been much improved for almost 3 weeks now. Soy is in everything, and it is a tough one to avoid. Anyway, I'm running out of ideas, and losing hope that any of these supplements will help me at all. I have not yet tried Elmiron or Amitriptyline, mainly because I am afraid of the side-effects (mostly hair loss). My hair already fell out after stopping birth control pills, and it is finally growing back. I don't want to try Elimiron and have it all fall out again. I also have a constant fear that this could be the start of something worse...do I have early symptoms of lupus, or MS??

So sorry for the rambling. But let me know if any of you have any thoughts or have found anything that has helped your own symptoms. Just knowing that there are others out there dealing with this too makes me feel like I'm not so alone.
7th March 2010
Hey Kristyn. I'm really saddened to hear that you've been battling this for so long. I can't imagine what it has done to you emotionally. You sound like you are very smart and informed and are extremely pro-active in trying to heal yourself effectively. I think you're wise for being wary of Elmiron and instillations. Here's the thing: SOMETHING is causing this. Your bladder lining doesn't just decide to fail for no reason at age 26. Also, the infection. The fact that this was when your symptoms began should not be ignored. Have antibiotics ever made ANY improvement in your symptoms?? Cipro really did for me. I don't think this fact should be dismissed. I have been reading about antibiotic therapy, which sounds idiotic at first because there is no fever and no signs of infection in the urine.

However, I'm going to start working with a doctor in virginia, Dr. Ruth Kriz, over the phone. She does a different type of urine test called a broth culture for 5 days and finds Enterococcus bacteria in 90% of her patients. She says 40% of the population has this bacteria in their urine anyway, but IC patients may have some kind of sensitivity or chronic infection I guess. She works with your regular doctor somehow to prescripe long-term low dose antibiotics for this condition and says 80% of her patients do very well. I think she believes this condition can result from a low-grade infection with a biofilm that is localized in the bladder cells, maybe between the lining & wall or something AND a somewhat lowered immune system. I still haven't had my phone appointment yet, so she hasn't fully explained the immune aspect of it.

Anyway, we are both similar in that certain foods don't seem to greatly worsen our conditions. A couple things that seem like they might be helping: I started the supplement Cystoprotek a few days ago which is supposed to sort of be a natural Elmiron alternative. about 52% of folks notice improvement on this supplement. Also, I have started eating LOTS of fruits and especially vegetables, and minimizing my grain. Not eating sugar. I figure if my immune system is down at all it's because I haven't been eating super well this past year. I have been eating blueberries, cabbage, spinach, kale, chard, carrots, and almonds every day for the past 5 days. So far, I've noticed improvement. My mood is better and I have much more energy. I'm not sure if it has really helped the baldder itself yet (you know, it's impossible to tell what works sometimes with all the ups & downs), but overall I'm much better. I'm going out and doing things again!!

So I would recommend a diet revision. and not the stupid "no oranges, wine, coffee" kind. more of an overall body/immune boost kind. It just HAS to help whatever is going on down there!!! It has made me happier. My phone appt with the antibiotic doctor is in early April, so.. we'll see. Anyway, I'll definitely keep you posted. Thanks so much for sharing what you've been trying. But DON'T give up!! SOMETHING is causing this and there must be a way to fix it.
10th March 2010
[QUOTE=kristyn377;4200015]I was on a 12-week long course of antibiotics, and it did not help. I was on several other shorter courses of different antibiotics before that (including cipro which made me violently ill & I was only able to take for 3 days). When I start a new antibiotic it sometimes seems like I feel better for a few days, but it never lasts. It could have nothing to do with the antibiotics & just be part of the normal daily fluctuation with this problem. Or it could be a sign that this problem is immune-related. But I really don't think it's an infection. All of the antibiotics I've been on & all the anti-viral/anti-fungal/anti-bacterial supplements I've taken should have gotten rid of any infection. And my cystoscopy showed that my bladder lining looked completely normal & healthy...no inflammation, damage, or sign of infection.

Cystoprotek is one that I have never heard of, which is surprising considering all of the research I've done on the internet and all the different doctors I've been to. I can't believe my naturopathic doctor didn't tell me about it, especially since it's an all-natural supplement. I would order it right away to try, but I just found out I am allergic to soy, and it says it contains soy and soy lecithin. But my soy allergy is not severe, and my doc says I may be able to eat it again after avoiding it for 3 months. So I'll ask her about that next time I see her, and maybe it's something I can try in the future. It contains a lot of ingredients that I'm already taking supplements of (glucosamine, chondroitin & quercetin). But maybe having them all together & combined with the additional ingredients & in larger doses would make all the difference...who knows. I'm up for trying anything all natural & without side-effects, so I'll definitely keep this one in mind.

Unfortunately, I am convinced that diet has absolutely no effect on my symptoms. I have tried them all. I did 10 weeks on the IC diet & felt miserable & lost 10 pounds (and I didn't need to lose 10 lbs). Then I tried an alkalizing diet, which included measuring the pH of my urine. I juiced fresh fruits & veggies every day for several weeks & kept my urine pH at 7-7.5, with no improvement. I did a yeast & fungal cleansing diet with no improvement. I did 5 months on a STRICT vegan diet, eating tons of fresh fruits & veggies & no animal products whatsoever, with no improvement. Then I did a month on the blood-type diet, which for me was high in protein & fruits/veggies, and low in carbs. No diet has helped me at all. Now I'm just eating anyting I want to & avoiding the 3 legumes I recently found out I'm allergic to. And I'm still feeling the same. I wish it was as easy as changing my diet to feel better, but I've tried & tried with no results.

Anyway, I'll be really interested to hear what this new doctor has to say to you. And thanks for telling me about Cystoprotek. If nothing else, maybe I can find out all of the ingredients & amounts of each & take these supplements separately to avoid the soy.

This "disease" is just so frustrating because no one knows what it is, what causes it & it seems like there's a different fix for everyone who's dealing with it! So goodluck with the antibiotic therapy if you choose to go that route. It didn't work for me, but it could work for you. Let me know if you find any other possible treatments too. I've pretty much run out of my own ideas.

Yeah, if you can handle the soy give cystoprotek a shot. It isn't very expensive on amazon. The key ingredient is hyaluronate sodium, which the manufacturers claim is a closer match to the bladder lining than the sodium compound in elmiron. But like elmiron, it can take a while to kick in. They said 90-120 days and I've been on it for about a week. So far it's hard to tell if it helps or not, but since I've been on it it seems like I only have bad urgency and frequency/burning for part of the day instead of all day. Whats weird about this is for me is it seems almost like urethritis. the symptoms start up after my first morning pee. But that doesn't explain the spasms. over time the spasming seems to be getting gentler and less frequent, but my bladder is more sore. so weird...

And wow... you really have tried it all. It's good that your cystoscopy didn't show any obvious problems. Doesn't make your life any easier though. I'll tell you how the antibiotics thing goes. It's bad to take antibiotics a lot, but if it really is some kind of microbial issue then it's important not to let it go.
11th March 2010
[QUOTE=laura86846;4201320]Yeah, if you can handle the soy give cystoprotek a shot. It isn't very expensive on amazon. The key ingredient is hyaluronate sodium, which the manufacturers claim is a closer match to the bladder lining than the sodium compound in elmiron. But like elmiron, it can take a while to kick in. They said 90-120 days and I've been on it for about a week. So far it's hard to tell if it helps or not, but since I've been on it it seems like I only have bad urgency and frequency/burning for part of the day instead of all day. Whats weird about this is for me is it seems almost like urethritis. the symptoms start up after my first morning pee. But that doesn't explain the spasms. over time the spasming seems to be getting gentler and less frequent, but my bladder is more sore. so weird...

And wow... you really have tried it all. It's good that your cystoscopy didn't show any obvious problems. Doesn't make your life any easier though. I'll tell you how the antibiotics thing goes. It's bad to take antibiotics a lot, but if it really is some kind of microbial issue then it's important not to let it go.

I'm going to try upping my daily dose of quercetin, and adding in some bromelain. I heard bromelain helps it to work. I was taking 1000mg/day of quercetin, so I think I'll try 2000mg. If that doesn't help, maybe I'll try cystoprotek in the next couple of months. Let me know if it works for you! I REALLY think that whatever you have going on, I have the exact same problem. The way 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.

Anyway, because we seem to have such similar symptoms, please let me know if you find anyting that helps you feel better at all. I'll do the same. Unfortunately, all I can do right now is give you a long list of everything that HASN'T worked for me. Good luck!
17th March 2010
Krystin,

I have now been on glucosamine, msm, prelief, bladder q and bovine colostrum - i am getting better and better :) I follow the diet fairly well but with the prelief have been able to eat certain things i shouldn't! had marmalade today! still take prelief even if eating right....i have found that the "wrong" drinks are a killer no matter what i do but food not so much for me... i did high doses of antibiotics and still wound up very unwell.... for me it just makes sense to work with the body and rebuild... i am going to get some chondroitin - can get with glucosamine and msm in tablets also - but have been having msm powder. Oh, am taking DHEA homeopathically also - since using the msm my energy levels have gone thru the roof! I am more active, even exercising! Cleaning the house and able to focus on my life again. I still get pain after urinating but it is gone pretty quickly.

I read on one of the other posts that a lady who has lived with this for years made the decision not to let it ruin her life - now that i'm feeling a lot better i feel this too... we are organic beings and it makes sense to repair and heal... for me the antibiotics just feel like they are causing more probs than they are worth...

i also alkalinise my body once every 2 or 3 days and take a probiotic every day... there are so many people that have gone into remission - positive thinking is a very important part of this - i am a hypnotherapist and can truly tell you that how you think about something is so very crucial :) Believe me, it would be nice to have this gone but i'm feeling like i can manage my life and i also believe that this will heal completely, and there will be a time when it was all just a bad dream!

I have over come many illness thru natural means and there is so much research on how condroitin and msm can help the bladder to heal... why not try it??? might even be less than the $129 and if it doesn't give you relief (make sure you are eating and drinking right for your bladder too) then go down the path of the meds...i can't tell you how many postings i have read of people taking drug after drug and still no relief! yet there are many that choose a natural approach and get incredible results! If a drug like Elmiron can help then why not use the natural means and do the same thing???

I'm waiting for my Pregnenolone to arrive from the States, i live in Australia, and then i will be able to produce the correct hormone levels - will get blood test in a month to see if any difference - all i know now is that i feel like there is a wonderful life worth living - even sex is good again! Still have around 10-20% symptoms but i can manage that and has only been a week or so on my regime :)

Amber xox
25th March 2010
How is it going kristyn. I've had IC for about 8 months now. I am a 20 year old male. IC is rarely found in males and especially ones at my age. I'm not gonna lie, I'm pretty tough when it comes to pain but sometimes these pains make me feel like I'm being tortured. I definitely know what your going through and it sucks pretty bad at times. Its funny how I was diagnosed with IC though. I had been fine all my life, no problems whatsoever. But about 10 months back I began taking a body cleanser. It worked great at first until one night I couldn't stop going to the bathroom to urinate. I went to the doctor and was put on some medication for UTI but the pains kept getting worse. So I finally went to a urologist and got some test done and in that same day he coined with me IC. The cleanser that I had been taking had such a high level of potassium it ate away the lining in my bladder. God did it depress me. I've been having to change my whole life style over the past months and it's been pretty hard but... it's been well worth it. I've found that drinking water is a key way of relieving pain. STAY WAY from carbonated drinks, coffee, alcohol, etc. Follow the IC diet and it can work miracles. I have also been on the medicine Elmiron for the past 2 months and I can already tell a big change. If the pain is really annoying you at times though drink a glass of water with a teaspoon of baking soda. This can reduce the acid in your bladder. Another suggestion is try taking the a pill called UTRONA-C which numbs the bladder. One last thing is if you can't resist a food that you know will flare you up take a pill called prelief. I never liked taking pills but these can really help out. I know having to make such a big change can be overwhelming but if I can do it I know anyone else can so don't give up. Hope everything starts going better for ya. Sorry if this post is late.
10th April 2010
[QUOTE=Nate601;4212325]How is it going kristyn. I've had IC for about 8 months now. I am a 20 year old male. IC is rarely found in males and especially ones at my age. I'm not gonna lie, I'm pretty tough when it comes to pain but sometimes these pains make me feel like I'm being tortured. I definitely know what your going through and it sucks pretty bad at times. Its funny how I was diagnosed with IC though. I had been fine all my life, no problems whatsoever. But about 10 months back I began taking a body cleanser. It worked great at first until one night I couldn't stop going to the bathroom to urinate. I went to the doctor and was put on some medication for UTI but the pains kept getting worse. So I finally went to a urologist and got some test done and in that same day he coined with me IC. The cleanser that I had been taking had such a high level of potassium it ate away the lining in my bladder. God did it depress me. I've been having to change my whole life style over the past months and it's been pretty hard but... it's been well worth it. I've found that drinking water is a key way of relieving pain. STAY WAY from carbonated drinks, coffee, alcohol, etc. Follow the IC diet and it can work miracles. I have also been on the medicine Elmiron for the past 2 months and I can already tell a big change. If the pain is really annoying you at times though drink a glass of water with a teaspoon of baking soda. This can reduce the acid in your bladder. Another suggestion is try taking the a pill called UTRONA-C which numbs the bladder. One last thing is if you can't resist a food that you know will flare you up take a pill called prelief. I never liked taking pills but these can really help out. I know having to make such a big change can be overwhelming but if I can do it I know anyone else can so don't give up. Hope everything starts going better for ya. Sorry if this post is late.
Nate,

Your post was quite uplifting. I'm glad to see your optimism and how well you are managing your IC. I'm at the beginning of my diagnosis and things certainly seem bleak.
14th April 2010
[QUOTE=laura86846;4197932]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 .
15th April 2010
[QUOTE=asgopt;4226606]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 . 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 .
16th April 2010
[QUOTE=ana123;4226699]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 the IC-Network, and to put it mildly, that website scarred 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.
24th April 2010
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. :rolleyes:
25th April 2010
[QUOTE=asgopt;4232783]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. :rolleyes:

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 .
and don't listen to those women in IC network , they are crazy in my opinion . They always tell you to watch your diet , but 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.
21st May 2010
Here is the biggest problem with IC and dealing with IC....no one really knows much about IC. Doctors can not tell you why it is caused or how to fix it. Some IC patients respond to Elmiron, others anti botic treatments and yet still others NOTHING helps. I have done almost everything I can to try and cope with mine but it is still there. I too have a REALLY bad UTI that I let go for to long and never seemed to go away. Could that be the reason I have IC....IDK I have always had a "small bladder" and made all of trips to the restroom, so who knows. Having IC means the lining of you bladder is in poor shape, could a UTI cause that, doubtful, but it is possible. Good luck on you struggle, it is a life long journey!
22nd May 2010
[QUOTE=kristyn377;3830530]I've been miserable for 4 months now. I had a UTI that started Aug 25th. 1 week of a herbal UTI remedy followed by 1 week of Nitrofurantoin antibiotic eliminated the signs of infection from my urine, but did not completely get rid of my symptoms. Since then I have tried more antibiotics (Cipro, Bactrim, Doxycycline), and 2 and 1/2 months of avoiding bladder-irritating foods, with no permanent relief. It will really improve for a week or 10 days. I'll think I'm finally going to be healthy again, and then my symptoms will get worse. I have had numerous tests done including: urine cultures, a bladder ultrasound, pelvic exams, a CT-scan, a cystoscopy, a MRI, a vaginal culture, and blood work. All tests have found nothing abnormal except for E Coli in my urine with the initial UTI on Aug 25th, blood in 2 of my urine samples since then, a sensitive nerve ending found during my pelvic exam, and dilated pelvic veins found by my MRI. Besides antibiotics, I have also tried detrol LA, flomax, hydroxyzine (antihistamine), and UTIRA-C (urinary antispasmodic/analgesic). Nothing helps. I have tried herbal remedies including the initial week of "bladder comfort" herbal pills, marshmallow leaf and corsilk tea, shatavari root, cod liver oil, probiotics, hyaluronic acid, chondroitin, quercetin, bromelain, and colostrum. Initially when I started some of these extra supplements, I think I took too many & they made me sick to my stomach. So I have just started taking them again yesterday but only 1 pill a day of hyaluronic acid, chondroitin, quercetin, bromelain & colostrum. I am running out of options, ideas, and hope. The urologist I have been seeing wants to put me on an antidepressant and Elmiron if i do not get better by Jan 15th. The urogynecologist I have been seeing wants to do another cystoscopy on me Jan 22nd and then possibly put me on Elmiron. I am worried that Elmiron may not help and will also make my hair fall out. I am only 26 years old, and I was perfectly healthy before I got the UTI on Aug 25th. Has anyone else had a UTI that led to interstitial cystitis? If so, what medications helped if any? Is this something I wil have to live with for the rest of my life? Or is there any hope that it will go away and not come back? My symptoms are that I feel like I have to pee all the time--like my bladder is always full. And sometimes I get shooting or jabbing pains in my urethra, especially right after I pee. Anyone else have similar symptoms, or have IC develop after a UTI? I'm miserable! I want my life back!

Hi
As I mentioned before. I had one UTI which was treated with antibiotics but I still suffered from symptoms for 7 months. I tried everything I could as far as natural medicines and I also been to 3 urologists. IC was dismissed since my potassium test was negative and I don't have pain and don't react to diet. I visited the last Urologist which explained me that sometimes the bladder wall get damaged from UTI and for some reason doesn't heal.
I started Elmiron and Elavil and after 2 months I almost normal. Well not completely but big improvement. I started hiking again.I also had discomfort in my urethra like a ball in my vagina and this discomfort has disappeared.
I refused to do cystoscopy since the only medicine the doctor can give is Elmiron so why bother if he is willing to give it without cystoscopy. I have done X- rays which were normal. I recommend Elmiron just to rebuild bladder wall damage that is caused by UTI. I don't have any side effects. no hair loss the opposite I see less hair on my brush. I know how you are suffering and I had the same. I even blamed people for cursing me or whatever.
22nd May 2010
Hi everyone. This is ridiculous that Urologists can not explain what is going on. I went to 3 after I found one that can. my Bladder wall was damaged badly after UTI. Again as I mentioned before I was having symptoms for 7 months but now Elmiron is rebuilding my bladder wall. The urologist said that IC is chronic inflammation but mine is just temporary damage that should be restored after 6-8 months on Elmiron. After 2 moths I feel much much better. I will continue to be in these boards for support. since I still have time for full recovery.
27th May 2010
Right, well my urologist phoned back, and after me being so sure the biopsy would show nothing, it's actually shown that I have chronic inflammation in my bladder. I know that's what IC is, and I asked him about it, but he said he thinks it's unlikely that I have IC and that this is probably going to go away in time. It makes sense that I feel better after I empty my bladder and the alkalising gives some relief. He also agreed that it could be urethral syndrome, or a low-grade infection, so going back on antibiotics may be the next step.

I'm being transferred to a different urologist who knows more about this stuff and hopefully will get an appointment soon. I know my doc said he thinks it's unlikely I have IC but the suggestion of it has really terrified me as all I keep reading about it is that it's incurable.

I'm desperately hoping now that because they know it is inflammation, they'll be able to tell if it's IC or not (hopefully not) and assure me that it will go. It sounds a lot like maybe this is what everyone else is getting - prolonged inflammation after a UTI that doesn't get a chance to heal. Obviously though if a biopsy is the only way to know for sure I wouldn't necessarily recommend it as it hurt like hell. I just hope this isn't bad news and I can get past it.

So, does anyone know of things that can help repair the bladder or help inflammation? I've heard about Elmiron but the hair loss thing scares me. Any other ideas would be really greatly appreciated.

Amy
27th May 2010
[QUOTE=AmyW88;4253495]So I'm still waiting for my biopsy results... no surprise my urologist hasn't called today as promised - so much for trying not to be stressed!

I went to my GP anyway who mentioned urethral syndrome, and just wondered if anyone else had heard of it? From what I can tell it does sound like what's happening to me - constant feeling of needing to go but with all negative urine uti results and a normal cystoscopy. Problem is it seems to be just 'one of those things' that will go away on its own... Has anyone else been told this may be what they have and if so, what can help it?

Also, has anyone tried a warm bath with baking soda? I've tried drinking it and it gives some relief for an hour or so but someone told me to put it in a bath so it can help. Anyone heard whether this works?

Amy

Hi
Some Women have normal cysctocopy and still had IC . My Urologist says he diagnoses based on symptoms only. My GP put a catheter in my urethra and I didn't have pain . So he said that that's how you check for Urethral syndrome. if you have pain that means that you have inflammation in your urethra.
I had negative potassium test - IC was excluded. But I still tried Elmiron and It is helping me a lot . So in my opinion every Urologist says different staff based on their experience. My Urologist is very old so I trust him. He said I have UTI damage to the bladder wall. I buy Elmiron half price in Northdrug store online. It is 147$ for 100 capsules and this is good for two months for me.
28th May 2010
Painter - I am on anti-anxiety medication too. I've got my final exams next week so I'm going to keep taking it at least until then. I'm also having a herbal tea made from marshmallow leaf, thyme and usa urvi. I think it might be helping a bit.

Ana - that seems to be the problem really that I keep being told different things. I know it might be that the new urologist says I do have IC but I don't think I do. My problem started with the infection I had, so I think it's the same as you, just damage from that. Hopefully he'll be able to suggest something not too terrible, the idea of the medicine injected into my bladder scares me a bit, and so does Elmiron because of the hair loss possibility.

Thanks both of you for your advice.
28th May 2010
Guys... IC isn't really a true diagnosis of any kind. All it means is "sorry, your bladder wall is inflamed/damaged/irritated and it doesn't appear to be due to a typical bacterial infection, so I don't know what's going on".

The only testing of any kind I received before being told I had IC by a urologist ("IC" in her words, is a "wastebasket term) was a standard urinalysis. I would highly recommend more testing before starting expensive elmiron which is nothing more than a band-aid treatment. Some people have hormonal issues that can cause bladder symptoms (in women). I know estrogen tends to make my bladder more irritated, even though it isn't the root cause. Unless you have anti-proliferative factor in your urine or something, your bladder should heal within a few days of the cause of your IC being eradicated
29th May 2010
[QUOTE=AmyW88;4254751]Painter - I am on anti-anxiety medication too. I've got my final exams next week so I'm going to keep taking it at least until then. I'm also having a herbal tea made from marshmallow leaf, thyme and usa urvi. I think it might be helping a bit.

Ana - that seems to be the problem really that I keep being told different things. I know it might be that the new urologist says I do have IC but I don't think I do. My problem started with the infection I had, so I think it's the same as you, just damage from that. Hopefully he'll be able to suggest something not too terrible, the idea of the medicine injected into my bladder scares me a bit, and so does Elmiron because of the hair loss possibility.

Thanks both of you for your advice.

Hi , I have been to 3 Urologists and if It is IC or not the only thing that helped me is Elmiron and cystoprotek. I didn't get any side effects from Elmiron. There is no other medicine. Even if you go to 100 Urologists that's all they can do. So you can continue suffer or try it. Try cystoprotek if you afraid from Elmiron. I was against it for 7 months and suffered. Now after 2 months I am getting better as long as take my medicine every day.
Today I was in a movie for 2 and half hours and I was ok.
Doctors like to talk about diagnosis but our body will always remain a mystery.
14th June 2010
Hi,

I read your post and there is one thing I can tell you. The diagnosis is not important cause there is only one treatment for everything and this is Elmiron and Elavil for reparing bladder wall. I am not concentrating about me having IC or not. I am on Elmiron 2.5 months already and I am improving every week. I understood that I should stop chasing for disgnosis and concentrate on a treatment.

By the way I am buying my Elmiron from a pharmasy in Canada and they sell it half price . (140$ for 100pills). With insurance it is only 30$ in Walmart.

I am planning to get married next year so I am staying optimistic. and yesterday I didn't go to pee for 5 hours and I drank 2 cans of soda.

About " no cure" for IC . Many people have cancer and there is no cure but they get well and continue living.
16th June 2010
Hey guys,

So I'm off antibiotics because another doc wants to test me for a few other things like autoimmune causes, mycoplasma, and tick co-infections (he's not convinced I have Lyme). I was doing great for almost exactly 2 weeks, then everything came back with a vengeance, just like the previous 2 times i was on antibiotics. so I'll get my results in a week or so I hope. This is very weird!!

I'm considering the possibility that the bladder infection I got while pregnant damaged my bladder and caused the IC and the symptoms came on after the miscarriage because the pregnancy covered them up. Because of this i'm taking a liquid glucosamine/chondroitin/msm supplement that's a little expensive but worth a shot. also trying aloe. I'll keep you guys posted.

ana123, I'm so glad elmiron is helping you!!! that must feel awesome.
13th July 2010
Hi everyone,

Thought I'd just update quickly. I finally went to see a proper consultant who said that he didn't think IC is causing my problem as I don't have much pain (if at all), because I'm young, and because I had a specific trigger to these symptoms. He said he has seen people before who have had an infection but for some reason the bladder just over-reacts and takes much longer to recover. The wee I saw him came at a point where I really was feeling better and was confident that I was improving, but the last week or so has been quite bad again. I've contacted him about trying some specific medication, as all I've been on so far is anti-inflammatorys. However, he has said this won't be Elmiron as it isn't available on the NHS and he's not convinced there's enough proof to show it works.

I'm hoping I'm just having a little lapse either because of something I've been eating, or just as part of the natural process going up and down, but I am a bit worried that I'm feeling bad again. I've just started a new job, and I don't think it's a coincidence that I'm feeling worse now that I'm feeling stressed again. Hopefully a new medication will just top up the natural healing that I think was already starting to happen.

The main positive thing is that this doctor has seen people in this situation before and is not immediately calling it IC. A bit of hope I think.
14th July 2010
Hi laura,
I was diagnosed with IC in may of this year but it took a yr for me to go get it checked out. I remember when i was 19 i had the same exact symptoms that i have now but i never had insurance so i didnt get it checked out. well after about a yr or so it went away. well now, 8 years later, its back. luckly i have insurance and got it checked out.
I am currently taking the glucosamine sulfate, fish oil, vitamin e, and just started elmiron. i read another girls post who said she takes these supplements along with d-mannose. im not too sure what the glucosamine does? do you?
14th July 2010
[QUOTE=silliesyl;4286000]Hi laura,
I was diagnosed with IC in may of this year but it took a yr for me to go get it checked out. I remember when i was 19 i had the same exact symptoms that i have now but i never had insurance so i didnt get it checked out. well after about a yr or so it went away. well now, 8 years later, its back. luckly i have insurance and got it checked out.
I am currently taking the glucosamine sulfate, fish oil, vitamin e, and just started elmiron. i read another girls post who said she takes these supplements along with d-mannose. im not too sure what the glucosamine does? do you?

I'm guessing the glucosamine provides your body with extra building materials for synthesizing your bladder wall. I wonder why yours came back...

my test results show uroplasma urealyticum in my urine, but that's found in 70% of healthy people. plus the doctor told me to stay on the antibiotic i was already on to get rid of it, and I'm not sure uroplasma would be this tenacious. my western blot had reactive bands, but negative overall, which is how some lady I know who definitely has Lyme's test was too. so I think maybe we have it narrowed down to uroplasma or lyme. hopefully.
28th October 2010
[QUOTE=Kirstieok;4611876]Hi all, some of you it seems are going through exactly what I have for almost 2 years now. Straight after New Year in 2009 I was diagnosed with a UTI. I had recently met a new partner so it seemed quite natural. Before then I had only ever had one UTI a few years back which was quickly cleared-up after a course of antibiotics. This time round however, the antibiotics did help the symptoms but I didn't feel completely cured afterwards, I still had the feeling of urgency and discomfort/burining feeling in my urethra. I gave numerous urine samples to my GP which all came back negative and was told that it was probably my bladder still feeling sensitive after the infection and it would eventually go away. A few months passed and I was feeling even worse, again I gave urine samples and nothing came back. I was taken in for bladder and kidney ultrasounds which came back fine, nothing to report. My GP then told me she suspected I had intersistial cystitis (IC). She then perscribed me Vesicare and two days later my symptoms were worse than ever before, I was then diagnosed with another UTI and taken off the vesicare. I then managed to see a consultant urologist who told me she knew the cure, to have my urethra dilated via rigid cystoscope. After the cystoscopy the urologist advised there was no sign of IC and to rule that out. She advised my urthra was a little tight so it had been dilated and that I should feel better within a week. A month passed and I felt no difference, I went back to the urologist who then put me on a 3 month course of low dose antibiotic Trimethoprim, taken once a day. After another couple months I went to another consultant urologist as I was still experiencing the same symptoms, again I gave a sample which showed up another UTI and was given Ciprofloxacin 500mg twice a day for 5 days and also put on Nitrofurantoin 50mg once a day which I have been taking now for a year. I have had tests to check whether I am retaining urine which sometimes show considerable risidual and on other occasions almost nothing. For a month I also practiced intermitant catheristisation twice a day however this seemed to aggrevate my symptoms and I never noticed a considerable amount of risidual urine left after I'd passed water. I have just finished receiving bladder instillers once a week for 6 weeks which I don't feel have made a great difference, last week my symptoms got worse again and am convinced it's another infection. I'm running out of options now and can't continue this way. The nurses suspect I am run-down (with the cold) which may have spurred this UTI I have at the moment. It just feels like it has been constant for so long and I can't see the light at the end of the tunnel. I can't drink alcohol as this seems to aggrevate it. Also I'm now beginning to wonder whether this may have something to do with my partner whom I'm still with. For a few months we reverted to using condoms and for a while it seemed my symptoms weren't as bad, however a day before this current UTI we tried out sexual intercourse without a condom and I'm paranoid that it's linked. Please please please help, this is making me miserable! Like you I am just fed up of being in fear of another episode coming on and the constant awareness of my bladder and urethra.
Many thanks,
Kirstie

Hi , I wish I could help you somehow. I have the same situation but the difference is that after the first UTI I have never got one again.
It seems to me that you have recurrent UTI. I am getting better every month but still I am not cured yet. I want to recommend you : 1) Eat fresh cranberries every day 2) take D-Mannose suplement every day . Those can help to prevent UTI. 3) Pee before intercourse and after.
That's what I do.
I also took Elmiron for 6 months and it helped me. I also took cystoprotek for 8 months and it also helped me also.
This situation is a mystery for all of us and I couldn't find even one doctor who has any reasonable explanation.
I was not diagnosed with IC. I did a potassium test which was negative.
I forgot , I am taking also Detrol LA which help me every day.

I hope this can help, We need to stay strong and keep hoping
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