Chronic Bladder Pain Syndrome

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Frequently Asked Questions

 

 


 

Is IC-BPS caused by bacteria or an infection?

In a nutshell, it seems (probably) not. The argument against this idea is as follows: There is no proof that bacteria is the cause. Ideally, we would like to see a single pathogen associated with ICBPS, but we don’t. Various attempts have been made to find a bacterial cause but the results have been confusing to say the least. One issue might be that urine is not sterile in all people. So some tests will give a positive response for some bacteria. When modern techniques are used such as Next-Gen sequencing, some positive results come up, but there is no gold standard (i.e. it’s hard to prove that these results are true by methods such as culture).

Some patients and doctors maintain that antibiotics are useful in some cases but because there is no definitive diagnostic test for ICBPS, or a way of classifying ICBPS into bacterial or non bacterial subtypes, the patients treated in antibiotic trials are a complete mixture of various aetiologies. Some seem to respond to antibiotics. What happened? Did they have a bacteria? Did they get better spontaneously? Why did people in the control group respond?

Overall opinion: I think that there may be a subgroup of antibiotic responders but we can’t say who they are at this moment. Also, since there are no strong leads, then there is no need to favour one treatment over another. Also, no drug means no patent and NO MONEY. So drug trials will remain small and uncontrolled until we understand the disease better. Outside of blinded prospective trials, patients might still want to try a course of antibiotics. Clearly, this is an unsatisfactory situation.

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Will it be an issue that I am not based in Australia?

No, it’s not unusual for patients to fly from across the country (and the world) for a consultation.

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Do you know if any of your research will be conducted in the United States?

Currently, we will not be conducting any research in the U.S., however if it is possible for you to travel to Perth, Australia we would be more than happy to include you in our future trial.

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What is the status of your research project at the present time (Feb 2016)? Are you accepting volunteers?

At present, we are raising funds to purchase some expensive equipment to help us collect the data we need. As soon as we obtain this system we will be collecting data from patients with IC/BPS and participants without, so we can compare the findings and draw possible conclusions.If you wish to contribute your case history to our data base, please, register on the Forum and post your story or experience. It is best to keep your details anonymous. Antonina can review your letter before you post it up, if you would like.

We are exploring the idea of the viral and bacterial triggers for IC/BPS and we will be discussing this on the forum in due course.

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