EPIC study at U of Maryland

[MarthaF]

The following was in a recent newsletter from the U of MD:

FOR SOME, IC APPEARS
RAPIDLY
For Events Preceding Interstitial Cystitis (EPIC), we
recruited women whose IC had begun less than a year
earlier and who allowed us to review pertinent medical
records. For this chronic disease, we were surprised
to find that 80% of cases sought medical care
relatively quickly: 50% within a week and another 30%
within the first month after onset of their symptoms.
Those who sought medical care quickly, by a number
of measures, did not seem to have better access to
medical care. Rather, they seemed to have a more
severe disease with worse pain, more evidence of
urinary inflammation, and more likelihood of seeking
care in an emergency room.

This and the fact that more than half the women
presented with burning on urination suggested that in
some women, IC is initiated by a urinary tract infection.
Now that recruitment of EPIC is completed we are
seeking in all cases evidence for urinary tract infection
or other causes of inflammation at the time of IC onset.

Our articles describing these findings are:
Greenberg ,P., Tracy. J.K., Meyer, W.A., Yates, T.,
Diggs. C., and Warren, J.W. Short interval between
symptom onset and medical care as an indication of
rapid onset of IC/PBS. British Journal of Urology
International, 2007, June 2nd.

[kadi]

I had sudden & severe onset of IC. UTI culture came back negative, never had burning on urination. Of course that didn't stop my doctor from giving me antibiotics & brushing me off when I came back saying they didn't work...

[mich2604]

Very interesting findings.

Mine started with an infection too, that couldnt be cultured, even with high nitrites. At the same time i had bacterial vaginosis. I caught mine early too, but didnt help me much.

[ads]

Mine started with a bad UTI, which I waited to get treatment for because of rarely getting them and a high tolerance to pain. (I know we shouldn't dwell in the past, but many times wonder if I would have gone to the doctor sooner things would have been different and my body wouldn't have been damaged. I was too busy enjoying work and all of the wonderful things of a normal life. Oh, to only return back to those times!) I was eventually treated didn't get better, multiple rounds of antibiotics even though infection gone, then went to thrid uro put me on flomax, and was better after six to eight weeks of constant urgency and pain. Then less than a year later it all came back out of the blue and never left. I also wonder back then, if I would have had pelvic floor dysfunction diagnosed and PT, then it wouldn't have become chronic IC/PFD.

I am going to stop. It doesn't to any good to think about things, which can't be changed. :bonk:

ads

P.S. U of M has a great research effort going on for IC. My one appointment there with Dr. Toby Chai was extremely educational and has influenced my thinking about IC and decision made about my treatment protocol. They are good doctors. If any one has a chance to support their research or be treated by their doctors then go for it! Thank you for keeping us updated on thier research.

[GriffsMommy]

I've only had one documented UTI in my live and that was when I was in college. I didn't start having pelvic pain until years later. My first burning while peeing happened when I had endo growing into my bladder wall and was sitting in my bladder. I personally think that the removal of this endo was what caused my problems. It's still good to see that research is being done though. I wonder is this University of MD, at College Park because that's where I graduated from. It would be cool to think that my school is doing such good IC research.

[MarthaF]

Many of us have been told we do not have bacteria using the traditional culture, but a later broth culture does show it. So many may actually have bacteria when symptoms start but it isn't found. Some bacteria is slow growing or it is in low numbers so considered a contaminant.

New testing is being developed using PCR and DNA that is much more sensitive. New research, that we hope will be published soon, will show many IC patients have Enterococcus that has not been found on prior testing. Early researchers believed IC was bacterial but couldn't find pathogens. Now they should be able to. Even asking the lab to let the tradtional culture grow longer, or to report ALL bacteria might lead to more diagnoses of infection.

The EPIC finding is important. Maybe IC starts with a regular UTI caused by E. coli and this weakens the bladder so that a pathogen such as Enterococcus can take hold but is not found and treated with the right antibiotic. The two different kinds of UTI require different treatment since they are different types of bacteria. A sensitivity test is a must.

Martha

[ICNDonna]

Mine started very quickly following an abdominal hysterectomy with an incision from navel to pubic bone. I had only had one UTI in my life and it was years before the hyst.

Donna

[ABliske]

My symptoms got really bad along with having bacterial vaginosis. I first when to get a urine culture thinking it was an infection. Then, I went to an OB and was told I had bv and pelvic inflamatiory disease. I wasn't diagosed until much later.

[mom_in_ma]

I had a low-colony count infection that started all of this mess years ago. I suspect it had been there awhile and caused an autoimmune reaction in my body. My immune system has always been whacky! I also had a history of documented UTIs with sex from my early 20's onward. I'm sure it didn't help.

[Claredale]

Mine was freq/urg, since I didn't have an infection, but since I couldn't empty, my doctor used a cathater to see how much urine I was holding. I never had a UTI until several years into my IC and I have only had a couple in about 20 years. I still wouldn't describe my pain as burning in my urethea. It is more of pain in my bladder when I pee. It feels like I have shards of glass coming out, so it takes me forever to empty since my bladder goes into spasms so much. This is a problem that I only have at night.

If I had every had a UTI before my IC symptoms started, I didn't now it.. I didn't notice any problems until I noticed the freq/urg when we were traveling and I had to keep stopping at least every 30 minutes and that was pushing it.

[Spacechimp]

Mine started suddenly as well. I never had a bladder infection in my life, then at age 40, literally overnight, I had severe pain in my bladder and urethra. I went to the doctor immediately thinking "This must be a bladder infection because I have the same symptoms that my friends have been talking about when they get bladder infections."

They told me I didn't have an infection but I am sure that's how it started. I am currently doing the broth cultures and they have found 4 different types of strep/staph.

[MarthaF]

I have posted this before but they are working on an new, high tech test for UTI bacteria at the UCLA. It has been under development since 2005 that I know of. It is announced at the American Urological Association meetings but evidently it is not ready for clinical use.
http://jcm.asm.org/cgi/content/abstract/44/2/561

It seems obvious that there is a realization that the current testing is not adequate. If so, many with early UT symptoms were probably tested and no bacteria were found. After this happened enough they were put in the class of "IC", which is considered "no bacterial infection". A microbiologist at a large urology practice told me they find Enterococci in low levels often but just dismiss them as a "contaminant".

It is possible that trauma such as surgery or catheterization can injure the bladder wall and bacteria in the bladder not causing a problem can then invade. Also hormonal changes and birth control methods can affect the tissues and flora that protect us from infection. As one uro posted here a few years ago it is easy for bacteria for enter the bladder due to anatomy and a short urethra. They may not bother some but do others.

We have to start thinking out of the box and push for more research on how infections can start. Some bacteria invade the tissues and some form biofilms or "pods" (See Dr. Hultgren's work at the Washington Univ at St. Louis). There is much research to be done and we need the many top researchers in the IC field to look into bacteria as a factor. They get most of the money from the NIH and after millions of dollars have not found a cause. One study done by the U of MD showed 48% improved on antibiotics but they did not think that was significant. They did not know what bacteria might be present but tried many antibiotics anyway. This finding should have been a clue.

A majority of UTI sufferers are women and a majority of IC sufferers are women. Probabaly about the same percentages. Anatomy is undoubtedly a major factor.

Martha F

[lan]

Hi Ladies - My symptoms also came on suddenly and severely like a UTI while I was on vacation. Unfortunately, the doctor that I saw on vacation did not test my urine (just put me on antibiotics) so I will never know if I actually had an infection. Although, I did do the home test prior to visiting the doctor and it showed positive for WBC and neg for nitrate. Anyway, after several courses of antibiotics did not cure my symptoms, I was diagnosed with IC.

[Anthrop42]

I'm sure my IC was a result of UTIs also. I always had honeymoon cystitis with every new boyfriend but I would take antibiotics & never get another until the next relationship. Then I met my current fiance at 41, had a bad UTI on a trip & a doctor at a clinic gave me the usual 3 days of Cipro. Barely worked. The infection came back and kept coming back repeatedly. After about 4 months, the symptoms never went away.

Aline

[mela414]

I had lots of bladder problems as a child and was constantly on antibiotics. I also had cystoscopies and urodynamics done. Eventually, lots of urethral dilations. I was constantly at the drs office. Eventually things subsided for a bit but then started up again when I became sexually active. That's when the real bladder infections set in! AS the infections went away with antibiotics so would the symptoms and I would have periods of being "normal". In my mid 30's things changed. I had a really bad infection, suspicion of endometriosis and a bunch of other things happening at the same time. My pain became constant and I started to notice that food and beverages were now bothering me too. oh well.............. :(

[Chatypaty]

I have been going to the Univ of Md now for over a year... I started with IC following bladder repair and a hysterectomy.. for over 6 months I was in terrible pain .. my surgeon recommended me to see a URO .. at the Univ of Md.. he put me on amitriptiline and Detrol LA... well I did pretty good .. for a while.. I would feel like I was getting an infection .. would run to the lab.. no infection would show up.. they gave me macrabid and cipro to use as needed and I think the longest I would go feeling fine would be 6-8 wks..Well for the past 3wks it has been getting worse.. now I saw my gyn on the 25th of last month .. he gave me another prescription to use as needed.. but told to go to the lab if I could before starting the antibiotics.. which is hard to do with a job and being in pain.. Now its really bad .. the past few days I have been running to the bathroom constantly and pain in the lower part of my body .. so I am back to where I started at this point.. I called my URo and am waiting for a call back shortly .. I know I used to see a diet on here when all this started up but cant find it now.. someone sent me an email address to send for it? can anyone help me .. thanks chatypaty