Bacteria??

[lilac22362]

I think it must be bacteria related. I'm 38 years old and never in my life did I have a bladder infection or problems, until my hysterectomy in Oct.2000. I got a bladder infection gram positive and after 7 rounds of antibiotic's I just showed multiple organisms with small colony count and they do not consider that infection? I knew I had a small bladder so that wasn't a knew thing but I also showed some red spots on distention so there fore got diagnosed with IC. I feel I had red spots due to it was only 6 weeks after my surgery and off course I just had a serious bladder infection. I had a catheter for 2 days and was in and out cath a few times as well. If it's not bacteria then how did I get it from hysterectomy? I honestly have never had a prior problem with bladder until the hyst and infection. I still feel there is infection I believe that some of us do get symptoms from low bacteria and why they won't treat it is beyond me.

[shell]

It seems completely possible that IC is caused by bacteria, but that the researchers just haven't identified it yet. The researchers who thought certain types of ulcers were caused by bacteria were laughed at until they were able to prove it. Or maybe I'm just too optomistic, I keep hoping for a simple solution, like a magic antibiotic, to be found for all of us.

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[SharonS]

I have been suffering for 8 years and I am still hoping for a magical antiobiotic also. I have had every treatment and pill for this and nothing has worked. Since Elmiron, my symptoms have worsened ten fold.
I have been reading alot abou thidden bacterias. I am trying to find a dr. that will test me for this.

[lilac22362]

Hi,
yes I guess I too dream of a magic antibiotic that will take it all away. I feel so bad for those like you Sharon that try everything with no good results. I just started Elmiron Jan 17th. How did you symptoms worsen? I get afraid at times. I do think bacteria is part of IC it may not be the whole answer. I think the bacteria just eats away at the lining of the bladder. I pray for the research teams everday, that at the very least they find a great treatment if not a cure. My IC specialist I see says we are moving closer. We've got to hang on and keep trusting God that he will guide the research people in the right direction. I had a bad night after doing well for two weeks and it gets so upsetting, just when you think you ahve found a way to get some rest IC has a d mind of it's own. Take care......Rene

[JudyK]

Sharon, Try this web site: http://pw1.netcom.com/~jewel3/uti/bacteria.html
This is a web site for Dr. Paul Fugazzotto, a microbiologist from Rapid City, SD and he does the soy broth culture testing. I started sending him my urine specimens in Nov. and he will do the test and send the report back to you with the correct antibiotic for the bacteria found. You will have to get your doctor to prescribe the meds for you. You can email me if you would like. ([email protected])
Take care. JudyK

[Jesi]

Originally posted by shell:
It seems completely possible that IC is caused by bacteria, but that the researchers just haven't identified it yet. The researchers who thought certain types of ulcers were caused by bacteria were laughed at until they were able to prove it. Or maybe I'm just too optomistic, I keep hoping for a simple solution, like a magic antibiotic, to be found for all of us.

[SharonS]

Hi. thank you all for answering my post. It feels so much better to know that there are people that understand. So many times I feel alone and depressed. Wondering if it will ever stop. I get a few days repreve of symptoms and I often think that it is gone for good. Wishful thinking at best. Any way, The Elmiron gave me worse symptoms then I had before I started taking the drug. I had frequency at night where I literally could not get any sleep. After reading that some are allergic to the outer capsule of the pill and they had the same symptoms, I stopped the drug completely. Now I am on Cypro and Terazol. Which has helped me a great deal but now I'm back in a flare.
I get this feeling as if I have a cut on the outside of the vaginal area. Does anyone else get this? It is not a cut but actually feels like one. I've used cortisone cream but it doesn not help. I thought that maybe it was inflamed from acidic urine.
The dr. wants to do the hyroextension, which I had 8 yrs. ago. But I did not have good luck with that either, so I am a bit afraid to try again. For the pain got so much worse after the surgery. Another dr. told me that, if that dr. had not gone in and done the biopsey and extension i wouldn't have the IC now. He said that he most likely aggravated a condition.(which at the time was imflamation)
I heard of Dr. Paul Fugazzotto. I, in fact, spoke to him on the phone several times. My own dr. is very open to anything I find in reasearch so I know that he will, hopefully, give me the drugs I will need. I have not sent in for my kit yet to dr. Fugazzotto because I have been on the cypro for a couple of weeks. I have to wait until it leaves my system. (which makes me afraid to stop, that my symptoms will worsen).
I also have a yeast problem that I have had before the IC. Which I am wondering if it could be my whole problem. Some say that yeast can mimic IC symptoms.
It is all so confusing and fustrating. For finding the right doctor(s) is so very hard. I have a wonderful dr.(uro) but the second I mention yeast he tells me it is not his field. The gyno tells me I have a problem but doesn't know how to cure the yeast thing. She then sent me to a nutritionist that never heard of IC and doesn't know how to rid the yeast. It takes a very long time to clear the yeast completely out of your system.
I will be sending to Dr. Paul and I will certainly let you know.
Please let me know if anyone gets this feeling like a cut outside the vaginal area. (it is not from sex or tampons for I can not do or use either)! :-(
Good health to all of you. And thanks so much for being there

[JOJO]

SHARON S. I AM REPLYING TO YOUR MESSAGE POSTED ABOUT VAGINAL PAIN AND YEAST. I TOO SUFFER FROM ITCHING AND VAGINAL PAIN,ITS HARD TO EXPLAIN,NOT IN THE INSIDE. YOU MIGHT WANT TO PICK UP A BOOK CALLED THE YEAST CONNECTION AND THE WOMANBY WILLIAM G. CROOK,MD. MY DISCHARGE SEEMS WORSE WHEN IM PREMENSTRUAL AND DURING OVULATION. FREQUENCY IS MY PROBLEM SECONDARY IS PAIN. I CAN RELATE THIS IS ALL SO CONFUSING!!!
I TOO MIGHT LOOK INTO DR FUGAZZOTTO INTHE NEAR FUTURE. RIGHT NOW I HAVE BEEN DOING ALOT OF READING ON YEAST. THE ELMIRON DID NOTHING FOR ME. GOOD LUCK -JOJO

[chelseahoffman]

UTI, anti-biotics, recurring, something else, then?

I was diagnosed with a UTI, was given strong antibiotics and 6 weeks later I have the same symptoms. I am not going to take another cycle.

I am taking goldenseal, 1 litre of water, cranberry juice pills and juice and acidophillis. Any more sugestions?

Could it be yeast in the bladder? Also it comes on when I start ovulation. This is for sure.

[PlainJane]

Bacteria

After two years of being told I had no infection turning up on my urine tests I sent away a sample for broth culture. My test came back positive for group d streptrococci. I also just found out I am positive for Lyme disease which can cause serious IC bladder symptoms.

I am sure there are bacteria that are getting missed by regular urine tests. Also, most doctors don't think to test for Lyme - none of mine thought to test for it anyway. Also, I've read that chlamydia trachomatis infections get missed a lot by regular general practioners and ordinary labs.

I think a lot of people are suffering needlessly. Most doctors/labs do not do broth cultures because it is expensive and time consuming. I had never heard of a broth culture until recently. I know there are a lot of docs out there who don't even know what a broth culture is so I'm not alone. If I think too long about this stuff and all the things that go wrong in labs and doctors offices it makes me a little crazy ( I like any excuse to use that emoticon).

Erica

[PlainJane]

I was diagnosed with a UTI, was given strong antibiotics and 6 weeks later I have the same symptoms. I am not going to take another cycle.

I am taking goldenseal, 1 litre of water, cranberry juice pills and juice and acidophillis. Any more sugestions?

Could it be yeast in the bladder? Also it comes on when I start ovulation. This is for sure.

Are you sure that those antibiotics are the right ones for the type of infection you have? I have heard it takes a long time to heal the bladder wall once an infection has gone untreated for months or years.

It is possible1.) those weren't the right antibiotics 2.) the dose wasn't high enough or wasn't prescribed long enough 3.) your bladder wall hasn't gotten a chance to heal yet.

Just my ideas though.

[willoweyes]

strep infection

I definitely think IC is induced from an undiagnosed or unknown bacteria. Recently, the doctors found strep in my kidneys. They were freaked. I have had a bad time with strep throat infections; I had five in one year! Now its been found in my kidneys. The really bad thing is that when I would get strep throat infections I did not have classic symptoms. I just felt really tired. Also, I had ulcers for years. Now the doctors know that ulcers are caused by bacteria and they are treated with antibiotics. It is possible that IC is an offshoot of that same bacteria. I think it is just something they haven't learned to identify yet. I also pray that someone will find out what is causing this disease and find out how to stop it in its tracks. I wonder if they find a cure, will our bladders really "heal"?

[niki_72]

hello there my name is niki, I have not logged into this website for like a year, because I just got frustrated to be honest..anyway, I was reading this topic about bacteria, and wanted to mention about my first symptoms of IC. well, one day I noticed quite a bit of discharge from my vagina, I went to the gynecologist. He said I had bacterial vaginosis. He gave me the cream (metrogel) that you insert into the vagina for like a week or something.Then I went back to the gynecologist, and he re-tested me, to see if the infection went away. Unfortunately, he again found that I still had this bacteria. He then gve me metronidizole, (an oral antibiotic). this antibiotic is the same ingredient that is in the gel, but stronger, being it is taken by mouth. I believe from what I remember, this finally cured my problem.

when I was being treated with this medication, (when I was using the gel) is when I first started having my very first symptoms of IC. I kept having to pee, and I thought I had a UTI. I was saying to myself, "oh ok well i probably have a UTI, it will be cured with antibiotic, no prob" but unfortunately, when I went to my family doctor, my urinalysis came back crystal clean, bacteria free..so I kept having these bladder symptoms. eventually he sent me to a urologist..

I was given a cystoscopy w/ hydrodistention, and that is when he diagnosed me with interstitial cystitis..this was in 1997.. What my concern is, did my ic start from having bacterial vaginosis? or from the drug metronidizole????????? i wish someone would do a test to see if metronidizole or the bacteria from bacterial vaginosis can cause bladder damage...

[LoriWithIC]

You know, that's a good question. I had bacterial vaginosis too when I was first diagnosed with IC. Basically after I had IC, they did a pap smear and caught it then. So I don't know which one started first to be honest. But I took that med (metronidizole) after I was diagnosed with IC. So I'm guessing if either one or the other was the cause, that it would be the bacteria rather than the drug. But it's just a guess on my part.

I sure do wish we knew more about how IC starts and how to cure it.

Blessings,
Lori

[glenda]

I definitly had the bv issue before and while I started having IC symptoms... I always thought it was related (still do).