Could IC be caused by Chronic Infection?

[ejay80]

Hi Neohioic, cystoscopy and capacity came back normal. I was in constant agonising pain that no one could explain because of false negative test results.

I’m definitely not cured yet unfortunately although overall I’m better than I was before treatment. I have mild symptoms with flares while taking antibiotics. My WBC count is still up and down also. It is my understanding that the right antibiotics kick start the immune system which then starts to fight the infection, hence raised epithelial cells and WBC. My immune system only kicked in last year. I’ve taken various antibiotics continuously since being diagnosed in March 2017 which include narrow spectrum, broad spectrum and a Fluoroquinolone. So far I haven’t had any side effects. I’m currently taking cephalexin and co-amoxiclav. I’m hoping to reintroduce Hiprex at some point to take alongside the antibiotics. I’m female but know of men being treated for chronic UTI. There was a discussion today on Twitter about protatitis. There are men that are members of the Facebook Embedded UTI Support /Advice Group. There are also US patients being treated by Stewart Bundrick that can provide feedback. There is also a US group which can be accessed by contacting JL Price or Kat Crowson.

[jen74]

I was diagnosed with IC back in 2006. I am one that was helped immensely by antibiotics. I tried every treatment available for IC and nothing helped.. I ended up being put on low dose antibiotics ( keflex) for like over two years. It was the only thing that helped my bladder. However, I will say, I eventually became resistant to it( bacterial resistance) and it stopped helping. Being on antibiotics long term also messed up my microbiome of my gut causing leaky gut and other issues. There are risks when taking long term antibiotics. I finally managed to get my IC under control( not even sure how), but it was pretty Good for a few years. I did develop gynecological issues though in the last three years( Adenomyosis, fibroids, Endometriosis) and had to have surgery 4 weeks ago ( laparoscopic hysterectomy with Endometriosis excision). Well, that has woken up my IC again. It's very disheartening to say the least. I have had three urine cultures done to check for UTI and every one has showed growth of Lactobacillus Lactobacillus species 10,000 - 50,000 counts. They say this is normal bacteria found in the vagina so they won't consider it a UTI and just say it probably was contamination from the vagina. I am not sure if this is an infection or not though. I mean I'm having symptoms and it feels like a UTI. It's very frustrating. Here is the thing, us who have IC from hidden bacteria, well there is an underlying reason going on in the body causing this bacteria are able to take hold and cause inflammation. The bladder is an innocent bystander.

[ICNDonna]

I was diagnosed with IC back in 2006. I am one that was helped immensely by antibiotics. I tried every treatment available for IC and nothing helped.. I ended up being put on low dose antibiotics ( keflex) for like over two years. It was the only thing that helped my bladder. However, I will say, I eventually became resistant to it( bacterial resistance) and it stopped helping. Being on antibiotics long term also messed up my microbiome of my gut causing leaky gut and other issues. There are risks when taking long term antibiotics. I finally managed to get my IC under control( not even sure how), but it was pretty Good for a few years. I did develop gynecological issues though in the last three years( Adenomyosis, fibroids, Endometriosis) and had to have surgery 4 weeks ago ( laparoscopic hysterectomy with Endometriosis excision). Well, that has woken up my IC again. It's very disheartening to say the least. I have had three urine cultures done to check for UTI and every one has showed growth of Lactobacillus Lactobacillus species 10,000 - 50,000 counts. They say this is normal bacteria found in the vagina so they won't consider it a UTI and just say it probably was contamination from the vagina. I am not sure if this is an infection or not though. I mean I'm having symptoms and it feels like a UTI. It's very frustrating. Here is the thing, us who have IC from hidden bacteria, well there is an underlying reason going on in the body causing this bacteria are able to take hold and cause inflammation. The bladder is an innocent bystander.

I'm so sorry for what you have experienced and are still having problems. I hope that when you have totally healed from your surgery that you will feel better. It sounds like you had a major surgery that could take at least six to eight weeks to recover.

If you feel you may have a potential for infection, I've read some good things about D-Mannose as a preventive --- I've never taken it, however --- so I don't really know for sure.

Sending well wishes,
Donna

[jen74]

I'm so sorry for what you have experienced and are still having problems. I hope that when you have totally healed from your surgery that you will feel better. It sounds like you had a major surgery that could take at least six to eight weeks to recover.

If you feel you may have a potential for infection, I've read some good things about D-Mannose as a preventive --- I've never taken it, however --- so I don't really know for sure.

Sending well wishes,
Donna

Hi Donna,

Thank you! Yes I actually take Dmannose daily( have been for years now). I am praying things calm down. Right now my bladder is very unhappy...

[neohioic]

Hi everybody, I'm on day 32 of taking 2 pills of 1,000mg (aka 1 gram) of hiprex (Methenamine) per day. I"ve been feeling like 95% normal the last week. TVast majority of time no pain. Get some pain here and there that is watered down but still bad. Today I had probably 5 minutes of pain. It is great. I'm not on anti-biotics. I take each hiprex with 2 500mg vitamin-C. So I take 1 gram on hiprex and vitamin C in the evening before bed, and in the morning. To give you a little info on me, my have normal bladder under cystoscopy, no real frequency or urgency. Just in and out of bad pain for over 2 years. Worse pain when sitting, but also pain when standing. Pain in and out. Bad pain. I"ve had like 29 bladder instillations, I went thru uro-dynamics, 2 cystoscopes, 1 hydro distention, I have the interstim because I had retention. The interstim was a relative piece of cake. I think the retention was caused from the 50mg of amitryptaline I take. I not take nortriyptaline 50mg per night and 25mg hydroxazine along with the hiprex. I also went thru pelvic floor physical therapy and lots of stretching. They checked my blood after 2 weeks of taking hiprex, and everything was ok. I plan on taking another blood test after being on the hiprex for 3 months to make sure everything is ok with my blood. I feel fine. It doesn't mess me up like the cyclosporine that I tried for 3 months. When I was on that drug I felt like it was killing me. I tried oxybutrin, and other drugs like flomax and uroxatrol which I really don't recommend. I was approved to get my bladder removed. My chronic pelvic pain specialist says bladder removal provides excellent relief of the pain. The bladder removal surgeon uses the special tools so he doesn't have to make big cuts. The doctor who removes the bladders says he does 40 of those surgeries per year. He told me 4 or 5 per year are for pain/IC and the rest basically are for cancer. If I keep feeling this good, I'm going to write a book. I want to spread the word about this hiprex. It doesn't fix everything in 1 day. First couple weeks it helped alot of still had bad days and periods of the day with considerable pain. It seems like since nearly 4 weeks of being on hiprex my days have been very consistently good. If I can get say 6 months of feeling straight normal which I'm not there yet, but if I can achieve that I will cut back to just 1 hiprex per day. I believe I will need the hiprex for life for if I stop the hidden infection will probably return with time. I"ve found the embedded UTI group within facebook very helpful.

[caroljunco]

I have had 2 UTIs and have been diagnosed with IC. I am very interested in the post on 10-3-2019, where you talk about embedded infections. A urologist in Shreveport, LA, was mentioned. Can anyone who knows him give me his name. I have been to 2 urologists in Dallas, Texas, and they say they treat IC but after a few treatments that don't work, they are at a loss of what to do. I have been in pain for several months now. I feel like there is an infection, but I know cultures don't give the correct results to IC patients. I would really appreciate someone giving me the name of this urologist in Shreveport. My email is [email protected] com.

Thanks.

[neohioic]

That doctor your looking for is Stwart Bundrick in Shreveport, La.. He does dna urine tests and he treats with long-term high dose antibiotics. He also recommends pro-biotics while taking them so people have less a chance of getting C-diff. I have also found an embedded UTI group within facebook that is very helpful.
I have been taking hiprex (Methenamine) for nearly 5 weeks now and it is helping me greatly. I would get on it if I were you. You must take it with vitamin C. I have been in pain for 2+ years and I so happy to finally have found something that works.

[caroljunco]

Thanks for giving me the name of this doctor.

[smartin175]

I have been fighting IC for almost 3 years now, had Botox injections, every medicine out there and Neurostim implant, nothing has really helped. The implant worked a little for approx. a month, then back to 35-45 bathroom trips a day. My urologist wanted to try the instillations, but I declined. I opted for acupuncture. I started that approx. 6 weeks ago, pain level is down from 8 - 9 to a more manageable 3-4 level. I have been working with my doctor now on reducing frequency thru acupuncture and Chinese herbs. Also using acupressure points in the ear with something they call 'ear tacks". Just started this 10 days ago and my frequency has gone down from an average of 39 trips a day to an average of 24 trips a day over the last 7 days, most recent day was 20 trips. In addition to the herbs and acupuncture, I have also gone on a "functional medicine" program revolving around diet and eliminating processed foods, animal products with hormones and antibiotics, etc. Pretty much organic foods, grass fed beef, etc. So far, I am pleased with the results, at least some progress which is more than I had from 3 years with a urologist.

[rantn.n.ravn]

Unfortunately cultures can also provide false negatives. Many patients who have negative dipstick tests and negative cultures actually have chronic UTI (myself included). In these instances the only way to properly exclude UTI as the cause of IC is to look at a sample of urine under a microscope. If white blood cells are present then the most likely cause is infection.

Even if cultures are positive there is no way of telling which bacterium is causing the infection. There are 400-500 bacteria living in the bladder so it is impossible to tell which one is causing the infection. The bacteria that show up on the culture/DNA test might just be the ones that were easy to grow, they might not necessarily be the ones that are pathogenic.

Please see research paper:

https://jcm.asm.org/content/57/3/e01452-18

In respect of surgery, if urinary catheters have been used and there is bladder pain and associated symptoms following surgery then it is likely to be infection caused by the catheter.

I originally started having symptoms over a decade ago and I basically had horrible pain if I sat down, but it was relieved somewhat if I was either standing or lying down. At the time I was working in a call center and had insurance. So I went to the family practice office I had used for several years and the doctor ran both blood tests and urine tests and at that time they found only a trace amount of infection/bacteria as well as blood in my urine and so they put me on an antibiotic and it improved the symptoms greatly for a while but they returned. I again went back to my family practice and that doctor had the same results with my urine and again redid testing and eventually told me I should see a Urologist. The Urologist I was seeing immediately put me on Detrol LA and a low dose of antibiotic (I can no longer remember which one now) and I had about three visits with her. At the third one, I had been looking online for answers and just happened to have a friend online from Canada that was doing his residency to become a doctor and because he had to basically study so much of everything, much of what I could tell him he said sounded like IC and then he mentioned other symptoms and I said yes those are happening too I just didn't realize that was part of the same issue. So I asked that Urologist at the time if it could be IC and she said maybe. Other than blood and urine tests, she had a CT scan of my pelvis both without and with contrast. Those results were confusing because she said it looked as if I had calcium deposits. Soon after my insurance sent me a letter denying me further access to see her using them because they deemed it a pre existing condition because I had UTI's in the past. What woman has not had a UTI? I know met get them too but women get them all the time and a lot of the time they don't bother going to the doctor and instead use the over the counter AZO pain medication and cranberry juice. And that is what is usually suggested alongside an antibiotic if you do get the UTI diagnosis too. And often the UTI subsided with just the juice and the AZO relieved the pain.

However once the medication refills ran out and I was back in the same situation, And I could not pay out of pocket to see a urologist I was left with no options. And I ended up losing my job over it. The company had a letter from that Urologist that stated I would need to go to the bathroom often due to a medical issue. When the company reassigned me to a different location that letter was lost from my file and i was told to go get another copy from the doctor. I explained that our insurance would not cover me seeing the doctor again to get the other letter. And they just went through the process of giving me a verbal, written and then final written warning about my productivity. There's more to that whole scheme they had going but suffice to say when they also fought against me getting unemployment, the unemployment people were not at all convinced by that company that I should be denied.
my
Soon after that I began looking for a job in an office setting that might not be so focused on productivity of staying on the headset phone line. I would interview and then get a call saying they really wanted to bring me back in but now they are no longer hiring for that position. The e conomy was tanking slowly. I eventually moved to another state and I managed my pain with Cystex, AZO and other OTC pain relief. But I had a coworker that also confirmed I had the same symptoms she did at the prior employer. She helped me understand what other medications help with the pain (the ones with methyline blue in them) and she was required to get the cystoscopy to prove she needed the medication and her urologist offered Elmiron as it was just coming on the market. She read that it had possible liver effects and she decided against it and she used the IC diet and said it was both relieving her symptoms and helping her lose weight.

I admit I've never been able to stick to the diet very well. I don't eat incredibly spicy foods anymore and I don't eat the more acidic fruits that I used to. But spaghetti and lasagna are staple foods in our household and the family of 6 includes two teenagers now, but they were younger and making foods differently was difficult for them to manage because of their special needs. The oldest has moderate Autism and the younger was diagnosed with ADHD, severe anxiety and there seems to be a bit of Autism there too but not severe enough to actually meet a standard to receive services for Autism specifically.

I eventually started getting treatment for this after a particularly difficult travel back from a concert where I had to stop every 5 minutes to search for somewhere to pee and it was infuriating for others to have to deal with me needing that. Since then every urine test I've had shows inflammation, trace of white blood cells and blood in my urine, but it's never been offered to use the same option of staying on a low dose of an antibiotic all the time anymore.

I had UTI's as a child/young adult. And I had one at a prior job that took a month to be diagnosed because the abdominal pain I was describing did not cause anyone to think to do a urine test. At that time because of the severe pain I was in, I was given a very small blue capsule to take for about 4 days. But I was told I could not use it continually. I wish I had kept better medical records for myself. I print out everything and try to save it by scanning it if I get it as a print out from the doctors offices and I get all my scans on disks. I do have good days, and still bad days. And my doctor did do a bladder distention and so much bleeding occurred she said I should not take anything that could thin my blood including the Elmiron until I saw no more blood in my urine. She said it just confirmed how bad my case is. When I had the cystoscopy done by a different doctor at her practice at the time he thought the Hunner's ulcers he found were necrotic. Biopsies luckily confirmed they were not. But my Urologist that started treating me properly for IC told me that it's possible I could have the Hunner's ulcers and them never heal.

I am going to try the Heparin instills soon to see if they help and I'm worried about the eyesight concerns with Elmiron as my eyesight is worse every night even when I have worn glasses all day things are still blurry or like double vision for farther away things and I could no longer read anything on a cell phone at the regular font size no matter how close or far I held it. I just could not focus on it. I am so afraid of what happens if all of this is connected and Elmiron has to be stopped by many and slight infections cause massive pain and the whole possibility of treatment options are thrown out the window due to so many difficulties.

But I have wondered why if every urine test that is sent for a culture comes back showing blood and white blood cells in trace amounts that it is just considered part and parcel of how IC manifests instead of also treating that.

Without Elmiron how will my bladder not become necrotic? Will doctors replace Elmiron with antibiotics? Pain relief is good but if there is still damage happening to the bladder it's not good to just block the pain.

I am hopeful that the makers of Elmiron will do more research to find out how it helps the bladder and if it is also harming the eyes and if they can separate the two. And obviously finding something that helps undo the damage to the eyes would be nice but I'm not sure if the people working on a bladder issue can help with eye issues as I'm sure there is a lot of difference in the tissues and such.

I know this post goes into more detail for other things than just the infection issue but it seemed appropriate to put it all in the post. I apologize if it doesn't belong here.

I am hopeful that all of us that are suffering will be able to find whatever works for each of us, since it seems no one is helped by the same things, and that things do not just get worse. Thank you for reading my post.

[HatingIC]

Wow. Everytime I have ever done a urine test they find blood In the urine but no UTI. So this Is also a symptom of IC? I was dx with IC In 2008. I hate this. Im having the worst flare ups this year. The lower pain and discomfort spasms are life changing. Any advice please. TY. I also get some relief from taking AZO but It also Is to be used short term correct?

[ICNDonna]

Have you tried keeping a detailed diary to help determine what is bringing on your flares? If not, I suggest you give it a try for a few weeks.


Donna

[Beverly Allen]

How long does it take for Bladder Rest to show results and provide relief?

[ICNDonna]

For me, it helps in a few days --- I take it on an "as needed" basis --- I'm mostly controlled by diet.

Donna

[rantn.n.ravn]

There are so many things i just glanced at to touch on here. When I was unable to get help using insurance because they insisted that my condition that had not yet been diagnosed officially was due to preexisting conditions because I have had multiple UTI's. More than were even documented because I had a pretty good way of feeling it and I would use the typical option and drink cranberry juice for a while. Whether or not this somehow contributed because it's high in acid is also a question, but it's also the advice I was getting when I did have an infection confirmed by a doctor in addition to taking the antibiotics.

I have a long history of having UTI's and bedwetting from my childhood. Part of my issue was that I actually slept so soundly that needing to pee THAT badly was not waking me up. I was given medication as a child. I don't know what it was called, but recall it was a small red pill. Now the UTI's were happening because at first I had done as most kids do and enjoyed bubble baths...and just playing in the bathtub even after I had my hair washed and such. I also "helped" by bathing my younger brother with me when I was 5ish until he got mad and shoved a toy into my eye because I would not give him what I was already playing with. But one of the first issues my mom noticed when I was less than 8 years old is that I was actually getting yeast infections and when consulting a doctor was told it was me being very sensitive to the bubble bath soaps and shampoo/conditioner used in my baths...and could even be caused by sitting too longer in just regular water before any soap was used. I also got UTI's because after age 8 my parents divorced and my father and his girlfriend insisted that i and the elder daughter of his girlfriend share the bath and of course as we were older the playing wasn't really a thing but it meant being exposed to more soap substances. After nearly 5 years my parents reconciled and I was already showering instead of using baths. By that point things were dramatically different. For example I would go pee before I left for school....and not go again til I went home later in the afternoon. And there was no problem with me overnight anymore. i assume my bladder grew into my body into the right balance for my liquid intake. i did start drinking diet soda a lot as I was a teenager. My father would buy it for himself in bulk while on sale and refuse to pick up the other flavors of things. I liked milk and Kool aid but I have always disliked plain water. But I suspect adding caffeine and it being diet soda could have contributed to some of the issues since that irritates this condition. Obviously I accept my choices as my own especially as i got older. But when I was in college I lived in a dorm for a year and slept hard like I had when I was a kid. We had a fire alarm because someone set a mattress on fire on the floor below the room that my roommate (friend from junior high through high school as well) shared. I heard nothing at all. She heard the alarm and people knocking on my door but in her own tired stupor she interpreted it as people asking me rudely to turn off my very annoying rude alarm clock. We learned the next day we had actually slept through a fire. I had also slept through the house next door being on fire while living at home. So I believe I did not have UTI's for a good 5 years at all. Then I got pregnant and at 19 had one. I was so mad because I had given up the diet soda because I knew it was not healthy for the baby. I was told it's very common for pregnancy to also be a time that UTI's are more frequent. After I graduated from college...took me nearly 6 years because of doing it while being a mom, and when I got my first job after college I had a couple of infections...one of which I was not describing the same way as they normally felt. It did not hurt when I peed, but my abdomen was very sore and I felt horrible. It took a solid month for the doctor's to even think to test for a UTI. And then once they did find it and it was positive they gave me some medications that relieved the pain finally but said I could only take it for like 3 days and I can't remember what it was called. It did not change the color of my urine. I believe that issue is what caused the insurance company at my next job to insist the initial symptoms of several slight UTI's with incredible pain was a pre existing condition. So in 2007 i no longer could afford seeing a Urologist. I still drank a lot of diet soda. Because I've been tired since I became a mother. I am not blaming my child. She was a miracle baby because two days after that UTI diagnosis while pregnant but only at 5 months gestation, the bag of waters was already sicking out of me and I was half dilated. I spent 6 weeks in hospital laying down with my feet slightly elevated most of the time to avoid gravity as much as possible. During that time I did drink root beer. Which one of the doctors pointed out has an awful lot of sodium and I snapped back that if I have ever had any issue with my blood pressure I certainly would do whatever I needed to and not drink it but seeing as I was dealing with a lot of my life turned upside down. Some root beer was a comfort. I had already become completely sick of Sprite/7-UP but both being carbonated could have also been slowly contributing. And my favorite juice to drink was pineapple. and many of my favorite fruits were acidic. Some of the citrus family, blackberries, granny smith apples (quite tart), peaches, strawberries...the list goes on and on that are in the no way category for IC. Did that too contribute I dunno. But when I finally was diagnosed in 2016 I think it was I had been drinking the diet soda and had a pretty heavy habit. I did stop for about three months when I initially had symptoms and it didn't seem to make a difference. So rather than being so so tired all the time i went back to my caffeine habit. I've never liked coffee or tea and am not even that big on chocolate....however being told I shouldn't eat it obviously has made it more of a craved food. But my bladder issues just degraded and my symptoms increased so much and then I started getting treatment and it included my first round of physical therapy for pelvic floor dysfunction. My abdomen was very rigid so mostly all that happened was I kept a bladder diary and the therapist talked to me a lot about this condition and released the spots she found on my abdomen that the fascia was tightened up. She did not want to use up all my visits so we stopped. I didn't consider going back for more treatment before the end of that insurance calendar year. I have went in twice more with a different therapist for other PFD therapy types including some interal release of pressure points. And also helping me with Fibromyalgia at the same time. But the initial therapist I had told me that it was pretty much a consistent thing to have had the sort of UTI and trauma associated with bedwetting and things like that in early life that causes PFD and when I told her that I did have it early in life and then by high school had no problems not needing to pee for a full school day and then had a few UTI's as an adult here and there and then suddenly had a very different pain and only very trace amounts of UTI on the dipstick. It was always that my pain was far out of proportion to the level of infection. And ever since I got the official diagnosis I believe there has always been blood and WBC in my urine in trace amounts but nothing seems to grow when it is sent to the lab for culture. But I do know my inital treatment with the Urologist I saw in 2007 was a low dose of an antibiotic. I have the type it was somewhere in my records and Detrol LA. while I was on those medications it did seem to help at the time. But eventually the refills ran out and I could not go back to get more. Or at least I believed I couldn't do so, it wasn't the normal doctor group i had used, and they had helped me when insurance was an issue but I didn't have any reason to believe this doctor that had seen me like three times to have the authority or desire to help me without payment or with a sliding scale or anything like that. Over the years between when that ended and my symptoms increased i used Cystex and AZO when i was having more extreme issues...but I knew neither were meant to be used long term regularly so I would make sure to only take them a few days at a time.

So I guess to sum up I think it's a combination of things, like having a predisposition to UTI's due to being extra sensitive, high acidic foods and drink and other things that do cause issues with this disease. And possibly even the recommendation of using cranberry juice while a UTI is diagnosed. My mother is completely perplexed why this happened to me and not her....however she has issues with kidney stones, I'm not sure if that's a good trade off since you rarely get anything other than told to wait for them to pass or surgery.

Whether or not I may have passed this on to my only child....i don't know. I was more careful with her drinks especially as she was growing up. She had a healthy relationship with drinking water. She enjoyed some pink lemonade from time to time and she was sensitive to juice early on and I had to dilute it for a long time. But milk, water and juice were her main liquids as she grew up....she rarely drinks soda and doesn't really enjoy carbonated drinks. She has however drank energy drinks because of her own issues with being tired while at work. But seeing my issues she's well aware of the things that cause me more pain. I was advised that just the fact that she was born prematurely meant she was more likely to have a premature pregnancy as well, it's possible that she is predisposed to it...so it's a matter of both genetics and trigger situations foods and drinks habits like bathing and bubble baths...all of those things in different ways may culminate in IC. I would like for them to find a distinct cause. I would also like for there to be a good solution that didn't include a large amount of medications. But it will just depend on how much can be put into the research on this disease/condition. I am not in a place to donate however if I can participate in a study that did not risk my symptoms getting worse by taking me off medications then I would certainly participate as much as possible.

But I hope treatments are found that relieve symptoms and that insurance companies don't refuse to cover. I wish everyone good days with their symptoms.