IC after recurrent UTI's

[Thinkpositive]

Hi, This is my first time writing a blog here. In Jan 2011, I got diagnosed with UTI's first time. I asked the doctor to send my urine for culture,however, he didn't not.He put me on microbid.I took it and got another UTI again.Again Microbid. I asked the doctor to send my urine for culture and sensitivity again. Guesss what, they found Staphyloccocus Saprophyticus coagulase negative. But the microbiologist writes on my report that the quantity of the bacteria is so low less than 50 colonies that they shouldn't be giving me anything.Can you imagine that?? When I insisted the doctor gives me Cipro for it. Also, they never did sensitivity on the bacteria. If anybody is interested, please do a research on the bacteria. It's a pretty nasty one and also hard to treat. After couple of UTI's and negative urinalysis I was sent to a urologist. When I told him about my story he was pretty shocked to see that they didn't do any sensitivity test on my urine even after so many UTI's.He even mentioned that these doctor should not practice medicine.
Anyways he gave me stronger antibiotic and I got better. My urgency and frequency went away but I still have the burning sensation occasionally.My urine results all the time negative ( just one positive for SSCN as I mentioned earlier)
My symptoms gets worse during my midcycle though. I am pretty sure that it's Staphylococcus Saprophyticus that is causing my symptoms. It's hidden somewhere in my bladder wall and causes burning....
I hope if we all can do someting together and bring the researchers attention towards the drug resistant bacteria and IC, that would be great.

I also have alopeica areata for last 20 years and it's autoimmune. I don't take any medication for my IC.Sometimes take painkiller though.

Please consider sharing your thoughts about it..

[ICNDonna]

Have you been diagnosed with interstitial cystitis? I know that some ICers developed IC after having multiple infections. Mine reared its ugly head following a major surgery.

I believe there may be more than one thing that causes IC, which is making it more difficult to pin down what brings it on.

Donna

[Snowden1]

I also had staph and another bacteria in my pelvic area following a hysterectomy. What antibiotic were you treated with? I always felt like when I was taking an antibiotic that I was getting better. But, when my culture came back negative I would stop the antibiotic. I don't think these bacteria (or whaterve can be killed by just one round of antibiotics - I think they are very resistant and come back.

[Thinkpositive]

Thanks for your reply

I got treated with third generation quinalone antibiotics i.e. levofloxacin for complicated UTI for a month. The doctors in emerg sent me home with all my symptoms of UTI because all my urine test were negative,therefore, they didn't want to prescribe me anything. I called my friend to consult a physician in India and send me medications from there. I got those antibiotics from India and my friend brought it for me. As soon I started them,my symptoms disappeared. I hate to say this that in North Amerca physician just rely on lab test and if they can't see anything under the microscope that means there is nothing they can do about it. When I saw the urologist here he said that it was the right thing for me to get help from outside the country because I got to see him after finishing my 3 months course of antibiotics.
Also, I got urinary stone in my right kidney after I got diagnosed with IC. I am pretty sure stone is also caused by this bacteria.My stone is only 2mm and my GP said they can't do anything because it's too small. I have done so much research on this bacteria. If you guys want you can go onto this website and read about it too. it..http://microbewiki.kenyon.edu/index...._saprophyticus

It clearly states that this bacteria sticks with the urolithium of the bladder and I am 100% sure that this bacteria is somehow capable of hiding itself in our bladder. Also, you can read about stone formation in the article.
I get UTI only when I have sex.Also it started with a new partner...Honeymoon cystitis. Staphylococcus saprophyticus is usually on the body of healthcare professionals and my BF was one of 'em. I don't have sex and I am surviving ok now. But don't know how long I have wait to have a normal life...I won't have sex until they find out how to find this bacteria and how to treat it.
Is there anybody else there with Staph saprophyticus??Try new meds for long time.

[Thinkpositive]

Hi Teresa,

I think you are absolutely right here. These bacteria become resistance to the antibiotics so quickly that we might not be able to notice it. I also believe that most people get IC after there surgeries because this bacteria is hidden somewhere in hospitals. I want to become a microbiologist to track this bacteria down. By the way I am a health care professional. So I read a lot about new stuff.

[ICNDonna]

Sometimes we feel better on antibiotics because they have anti-inflammatory properties. For many years antibiotics were ordered for everything, even colds (for which they aren't effective) --- which resulted in antibiotic-resistant bacteria. I don't take them unless there is verification of infection present.

Donna

[JustmeGemmy]

My Dr has prescribed me a few antibiotics &, for the most part, they seem to clear the problem up.. but then a week or so later, the problem is back again! I always thought that there must be bacteria there if the ABs are helping, I had no idea they had anti-inflammatory properties. My Drs only seem to prescribe 3 days worth which is very annoying because it's always on the third day that they help the most.. Then I stop taking them & the problem comes back (& if it is bacteria, it comes back stronger!)

Since this began in December, I've not had a positive lab result for bacteria. I don't know if that means there's nothing there at all or if the numbers are low on their system so it's nothing to be noted. White blood cells are present in every single dipstick test though. This has led my Dr to think it might be IC or an inflamed bladder. I've been referred to a uro for more tests.

[flowerangela]

sounds very similar to my ic story. i support the theory we have tiny bacteria hiding out as well. interesting article. hope you find relief for your ic soon.

[Thinkpositive]

Antibiotics help

I agree with what you guys are saying that antibiotics has antiinflammatory properties and that helps with IC symptoms for few days, however, in my case if I take antibiotics after having sex I don't have any IC symtpoms. It's exactly like having a UTI after having sex,typical symptoms. I still do believe that there are bacterias hidden in my bladder that are causing the problem.

I mean antibiotics are given for preventative measures for reccurent UTI's so what the difference between my symptoms and having a patient UTI. I have that exact same symptoms as a UTI pateint does.

I hope if we all together try to find out what causes our symptoms and how the problem started we might come to conclusion. It's a big challange for all of us to fight with this problem but it's not impossible. Sharing our stories help

Thanks Guys
May GOD bless you all

[Engtch29]

Bladder biopsy

What gets me is that if this is true, why can't doctors see bacteria or viruses under examination of biopsies. Of course, I am not a medical professional, far from it, but it seems like it would be easy if that were the case...

Thoughts?

[ICNDonna]

There are many theories out there about what cause/s of IC. I believe I probably had the disease in a dormant state until the symptoms were brought out by a major abdominal surgery (an abdominal hysterectomy with an incision from naval to pubic bone), which I now refer to as the abominable surgery. I don't think mine is related to infection/bacteria.

I hope one day soon a cause can be pinpointed --- and a cure to shortly follow.

Donna

[carday]

Re: IC after recurrent UTI's

I just had a culture and found that my never-ending UTI was caused by staph saprophyticus. I used to be a whiz at treating UTI's if they were caused by e-coli or candida, but staph is a really hard bug to kick. Everyone says just to take antibiotics, and I am. But the problem is this bug can grow everywhere on your body and is super-persistent. I think the IC community or UTI-community should really figure out which natural preventative treatments really work with each specific bug. Especially since one theory is that IC might be caused by an undetected infection. Everyone says just to take cranberry pills and possibly take cystex for UTI's. That works if it's e-coli. But if it's staph, I found that you can't wash it out as easily. It seems to really cling onto the bladder walls. I found that long soaks in hottubs or baths, heating pads, baking soda, garlic, and topical tea-tree oil kept symptoms at bay. Also, acid food, caffeine, sugar, and alcohol completely exacerbated my symptoms, much more so than with a normal UTI. I read that paprika is effective against it. Possibly oil of oregano??? I think it's almost irresponsible of the medical community just to suggest antibiotics every time, as methicillin-resistant saprophyticus has already developed according to a Japanese study. How hard is it for them to put staph sapro in a petri dish and test out various things on it?? So now, I'm taking antibiotics and plan to change my body wash to either a tea tree body wash or eucalyptus body wash to prevent reinfection. It's helpful to read people's testimonials for dealing with antibiotic-resistent bacteria and get a good idea of how to treat your particular issue. This link was inspirational for me:

http://mrsachronicles.blogspot.com/