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!
The following user gives a hug of support to kris447: Wooglie (06-10-2011)
No, I have absolutely no other health problems at all. I was 100% normal and healthy until I got a UTI in August. And now it seems that it may have developed into IC, and I am miserable all the time.
HI!
I've been dealing with a similar problem for about 4 months. Everything started from a simple bladder inflammation(cystitis).It went away after taking an antibiotik. In about 1 month the symptoms cama baxk. But this time,there was no infection found in my urine. I've tried a lot of things,but almost no effect. I feel the need to urinate every 2 hours. It' so depressing,I can't concentrate on anything apart from thinking that soon I have to go back the washroom. I haven't had any tests apart from urine sample though,but my doctor said I have interstitial cystitis,told me ta avoid spicy food,coffee,oranges...telling me I just have to learn to live with it. But the question is how???
From what I know,the cause of this disease is still unknown,but possible causes include STDs or traumas in the past.
Anyaway,how are you? Still same symptoms?
Wish you luck and hope everything will get better.
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
Last edited by aleet7; 01-22-2009 at 06:08 AM.
Reason: typo
Hi,Aleet7!
Thanks for your reply a lot. It's so helpful to know you're not alone with your problems.
You mentioned something about hair loss,do you mean IC can cause hair loss?? I'm very curious,because I have this problem too! I've never heard it can cause your hair fall out though. I also have one more question:can IC cause some kind of itching,burning or irritation aroung your vagina,since I'm having these symptoms too and wondering if tis is the case or maybe it's a yeast infection.
Your reply would be appreciated.
Thanks.
Hi, I'm new to the board so this is my first post.
I felt compelled to join after reading some of the posts for over a month now. Anyhow, I wanted to say that I really relate to you, kristyn377. I read your posts and it's like I wrote them... my experience has been so similar. I thought I had a para-urethral infection as well since they found a small cyst there with ultrasound and I convinced my doctor to put me on long term antibiotics (about 9 weeks total of Cipro). I think the cyst has cleared since, so this may be due to the antibiotics but I still have symptoms of Urethral syndrome.
Anyhow, I just have to share something with everyone. About a month ago (while still on Cipro) I started taking Calcium magnesium supplements (not at same time of day because they fight for absorption). I read that these minerals can help Alkalize the urine and I thought that maybe that was causing the burning. I even bought pH paper to track my symptoms with the acid level and realized it hurt more when I had more acidic urine. Anyhow, just yesterday I found more info about Calcium (specifically Calcium Citrate, and also Magnesium citrate) and how it can help IC symptoms, and that included people with urethral burning/pain. The key here is that the Calcium citrate binds with a chemical called Oxalate and can prevent it from absorbing into your bloodstream from your gut. Oxalate can be found in some common foods and I haven't read ANYTHING good about it... Google it and you'll see what I mean. Oxalate is a urinary tract irritant so the idea is when it's excreted some people can experience burning and pain. I don't think it's a coincidence that I notice the burning is less when I take this supplement more often, and when the burning stops my urgency also goes down. My supplement is a combination of Calcium and Magnesium Citrates, but it also had other Calcium and Magnesium compounds. Later today I am going to try and find only Calcium/Magnesium Citrate to take with meals (and lots of lemon water). I want any Oxalate I ingest to bind to the Citrates and leave my body before it can be absorbed. I think you'll also notice a lot of people talk about the IC diet I think this goes hand in hand with a low-oxalate diet. Some of the other posts I’ve read show people say they have a combined low-oxalate diet and take the Calcium Citrate to control the symptoms. I am ON BOARD with that idea now. Maybe you should try this out too! I’m going to start with 200-400mg/3 times a day (with meals if I can). I read this is a good place to start. You don’t want to take too much because that can also irritate the bladder (not surprising). So far the pain relief I get from the calcium beats the Pyridium /Phenazo… I think that’s crazy, so I really hope when I go on the pure citrate supplement i see 100% improvement.
Also, I think it’s important to have healthy bones so I’m planning to take the combined calcium and magnesium citrate supplement (2:1). I think whatever does not bind to the oxalate will end up being absorbed and ready for my bones. It’s still more minerals than I would normally get anyhow. And one more benefit.... taking Citrates helps reduce/prevent kidney stones!
(BTW, I've had this for over a year now. It started with an innocent UTI…. I was starting to think I’d need antidepressants. Just the thought of a simple supplement being part of my solution give me a world of hope!)
Last edited by Ottawa77; 02-02-2009 at 10:46 AM.
The Following User Says Thank You to Ottawa77 For This Useful Post: erlaw (02-05-2012)
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.
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.
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.
Last edited by moderator2; 03-07-2010 at 04:47 PM.
Reason: posted contact info - please read the posting rules
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.
I am struggling something chronic! I have had what i thought were uti's for about 9yrs fairly regular... i now am in pain all the time, since about 4mths or so now.. i took bladder q and thought my whole life had changed - as well as changing my diet. Well that lasted for about 2 weeks.... now it doesn't seem to matter what i eat or drink and my usual antibiotics Macrodantin doesn't help at all I was interested to read about the cipro - i might give this a go.... Macrodantin used to work so well and now nothing for me.... i even did a 3wk course of 3/day.... i got relief for about a week, now worse than ever... how are you feeling now?
i am trying just about everything - damn expensive! I haven't been diagnosed yet as i have to wait to see a specialist but i have had such minimal good results with doc's in my life that i'm not holding my breath anyway!
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.
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!
well, after the message i sent you i read somewhere that bovine colostrum is helpful - i remembered i had taken some before....so.... i took it and went to bed. The next morning i woke up and went for a wee and NO PAIN OR SYMPTOMS WHATSOEVER. i continued to take it, 3 times a day and i had 2 days of no pain - felt like a normal person again!
I have the same symptoms as you guys - feel fine until after i pee - but i have been taking bladder q and since using that my frequency and urgency has diminished.
Coz i was feeling so good i had a cup of tea - Wrong thing to do silly me... so i have had a day of pain again but feel a bit better again this morning.
I read that chondroitin can be helpful and have been taking msm and an alkalinity powder to lessen the acid. I am testing very alkaline most of the time now I am waiting for Prelief to get to me, which i think will help considerably as obviously (after having the tea) foods are affecting me more than i thought! I have been drinking Teecino and love it soooooo much - take it with me to coffee shops and never feel like missing out now
Anyway, give the colostrum a go - oh, had my blood tested with doc and my DHEA and Testosterone levels are very, very low - came home and read that when DHEA levels are low your immune system suffers.... hmmmmm, a correlation to this immune disorder called IC?!?!?!?!? So, going to supplement these hormones also.... worth a try and i might get some energy back!
Interesting... I know colostrum has antibodies in it. How is it supposed to help and where do you get it? My symptoms don't respond to food. even a margarita didn't make me feel worse
Bromelain is a plant enzyme right? I took those during pregnancy and it REALLY seemed to help some mild indigestion issues I was having. Thats a good idea! Let me know if upping the quercetin works! I'm taking some right now too.
My symptoms change all the time too, like you. sometimes the bladder area does hurt or feel full all the time like you mentioned, but the urgency/frequency/burning definitely overshadow it. I pretty much always feel burning and I feel shooting pains and a weird raw feeling in my urethra after I pee. Horrible! Some days I am really, really upset about this. I really want to know the cause.
You said you were pretty darn sure you dont have an infection. I'm still not so sure about me. I just had a bad e. coli one, I was pregnant, tired, and had a miscarriage days before this all started. I didn't even have a D&C so I think wearing the pads and a couple of long car rides couldn't have helped anything. < edited >
this is the first time I've heard someone give a sound, logical, scientific explanation as to why it could be bacteria-- and why typically prescribed antibiotics dont do the job--, so I'm interested. If it really is just a "randomly dysfuntional bladder wall" or whatever, I'm banking on the cystoprotek to help me out. I also am making an appointment with a friend who knows chinese medicine. other than that... sleep and sometimes cardio exercise help a little. and thats it. food seems to have no bearing. I dont think I experience "flares" like most people do. you probably know what mean... lol. good luck to you too!!! Thanks for the info!!!
Last edited by hb-mod; 03-14-2010 at 03:54 AM.
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Amber... I have found that my symptoms get much worse when it seems like my hormones are out of whack. So you could be onto something with the low DHEA. I'm currently on symplex-f to balance my hormone levels & it has helped tremendously with the hair loss, mood swings, and irregular menstrual cycles I was experiencing after stopping birth control pills.
Laura... You can buy colostrum online. I have a bottle of it, but I haven't been taking it. I tried it for a few days back when this whole problem began for me & I felt much worse. I only tried it for 3 days though, and feeling worse could have had absolutely nothing to do with the colostrum.
Yes, bromelain is a plant enzyme. It aids in digestion, and it's supposed to help the quercetin to be absorbed. I've only been on the double dose of quercetin for a few days now. But I have been feeling pretty darn good. Too soon to tell if it's from the quercetin, but I'll let you know if I continue to feel good.
I get the same "raw" feeling in my urethra too. And I know how upsetting this mystery disease is! Not knowing what's wrong is the worst part of it. I'd be willing to do anything to fix this problem, but without knowing what's wrong, it's impossible to know how to fix it. Only thing to do is to keep trying different thngs & hope to get lucky & find something that helps. Some days I've been so sad and depressed about it that I don't even want to get out of bed. But then on the opposite end of things, when I'm having a good day & feeling fantastic, I'm so happy & I just want to live life to the fullest. The ups and downs of my symptoms are completely tied to my mental state.
Yes, I am pretty sure I don't have an infection. I took 12 weeks of doxycycline antibiotic with no luck. Thanks for sharing that article. I looked up doxycycline after reading that. It says it's effective against several strains of both gram negative and gram positive bacteria, including streptococcus pneumoniae. I couldn't find anything about its effectiveness against other stroptococcus species though. So it seems possible that this could still be an infection that doxycycline was not effective against. I'll be very anxious to hear what your broth culture shows, what antibiotic the doc suggests you try, & if it helps you at all. Please keep me updated. This whole problem did start with an E coli UTI for me, so it's conceivable that an infection of some other bacteria occurred at the same time.
I'm so sorry to hear that you had a miscarriage right before this all happened. I can't imagine how tough all of this has been on you. I've had to deal with some stressful things lately, but nothing like that.
The idea of trying Chinese medicine interests me. I've thought of trying acupuncture, but it's so expensive. My health insurance of course wouldn't pay for it, just like they don't pay for the naturopathic doctor I've been going to. Just like you, sleep and cardio exercise seem to help me too. My symptoms are very mild or non-existent while I'm sleeping. And if I go for a run or something like that, my symptoms seem to disappear temporarily too. But usually when the run is over, they come right back. So strange. Food makes no difference though, and I don't feel like I have "flares" either. For me, it's more like I have good days & bad days.
Anyway, hang in there. And keep me updated.
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Hi Laura. I'm really thinking about having a urine broth culture done now. I researched it a lot after you mentioned it, and for $129 it seems like it would be something to try, just to see if they find anything. If they do, I'll have to decide which doctor I want to work with for the antibiotic therapy. I could see my current naturopathic doctor (but she's awfully expensive), or I could see if I could find a doctor covered by my new Kaiser Permanente insurance that would work with me on this. Or a 3rd option would be to work with Ruth Kriz over the phone. I was wondering if you know how much Ruth charges? Are you still thinking of having the urine broth culture and working with Ruth too? Thanks.
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
I was interested to read about the cipro - i might give this a go.... Macrodantin used to work so well and now nothing for me.... i even did a 3wk course of 3/day.... i got relief for about a week, now worse than ever... how are you feeling now?
I am waiting for Prelief to get to me, which i think will help considerably as obviously (after having the tea) foods are affecting me more than i thought! I have been drinking Teecino and love it soooooo much - take it with me to coffee shops and never feel like missing out now 
