The Mystifying Interstitial Cystitis-Bacteria/Even Fungus! Connection
We are honored and grateful to offer URelieved to people with Interstitial Cystitis to help manage this disorder and help relieve symptoms. Unfortunately, URelieved is no cure – it is designed by a woman with IC to give some relief of flares and accompanying symptoms. Out of the vast categories and subcategories of IC, we are also pretty certain that we will only be able to help specific IC categories with our product. The IC-Network brilliantly helps further understand IC by spelling out for us the five different sub-categories of IC: https://www.ic-network.com/interstitial-cystitis-subtypes-phenotypes/
#1 – IC: Hunner’s lesions
#2 – BPS: Bladder Wall Phenotype
#3 – BPS: Myofascial Pain Phenotype
#4 – BPS: Neuralgia Phenotype
#5 – Multiple Pain Disorders/ Functional Somatic Syndrome
Although we are not certain what types URelieved will help, it is probably likely that Type 2, the Bladder Wall Phenotype, will respond best. None of this is proven or set in stone, however, because every single IC case varies dramatically, even within each sub-category.
Bacteria and/or Fungus Connections to IC
IC is not a UTI, of course – we’ve gotten that from the get-go. No bacteria in your urine, so not a UTI. Nevertheless, it seems that bacteria – fungus even now – cannot be separated completely with some cases of IC. The fungus connection seems to be relatively new – as seen in this article: https://www.ic-network.com/mapp-research-network-study-finds-fungus-urine-might-linked-urinary-urgency-pain/
The article summarizes with the following: ‘ “These results suggest the intriguing possibility that particular microbial patterns maybe associated with specific symptoms, not necessarily diagnoses. This could lead to new diagnostic and treatment algorithms for patients struggling with lower urinary tract symptoms.” Clearly, there is a need for greater testing for fungi in urine screening. Bacteria may not be the root problem in some patients. It’s time to consider the role of fungus as well.’
To me, this paragraph is essentially saying that if you have lower urinary tract symptoms like frequency, urgency, etc. and there is no bacteria in the urine, you don’t necessarily have IC; you might have microbes of a fungal nature at the root of the problem. Of course there is also the assumption in many IC circles that low-level bacteria are causing IC – or IC symptoms and flares – that is, those tiny bacteria that cannot be detected by standard doctor lab tests.
This does lead one along the sneaking suspicion of bacteria/microbes at the root of at least some IC cases. This 2008 study from Urology journal, entitled, “Urinary tract infection and inflammation at onset of interstitial cystitis/painful bladder syndrome” gives even more reason to suspect bacteria: https://www.ncbi.nlm.nih.gov/pubmed/18538691
The study states, “Evidence of a UTI at the onset of IC/PBS was found in 18% to 36% of women… These retrospective data suggest that a proportion, probably a minority, of women at IC/PBS onset had evidence of UTI or inflammation. Our results indicate that UTI is present at the onset of IC/PBS in some women and might reveal clues to IC/PBS pathogenesis.”
Technically I guess 18-36% is considered a minority, at least in scientific language, but I would bet that most of the public wouldn’t necessarily consider this a massive minority; that is, we’re not talking 2-4%, for example. The point is that in up to 36% of women in this study, the UTI was the big bad harbinger of doom. Whether it stayed around as a sneaky and unwanted guest or made off with lasting damaging effects to the urinary system seems to be the question in these cases. If in up to 36% of cases women started with UTI’s that never completely went away or were never properly treated, but led to slow deteriorating effects on the bladder and urinary system which resulted in IC, to me this is nothing less than tragic.
Also, I cannot help but wonder at the vast types of bacteria - and their sources. Are these beginning UTI’s from the spirochetes bacteria from Lyme Disease, from Leaky Gut Syndrome, or from dirty hot tubs and bathtubs, sex, etc.? Do the increasingly bacterial resistant anti-biotics have anything to do with this – i.e. they are just not killing off the UTI bacteria like they should or used to? Just who and what are these pernicious bacteria, invading and hiding and causing complete misery for so long in so many?
Recently I was lucky enough to exchange information from a URelieved customer who generously gave me information on a lab called MicroGen which does extensive detailed testing on urine for Chronic UTI Infections. The process is that you request a kit and must have the cooperation with your urologist to proceed with the test. The website is https://microgendx.com/urology/
Reasons For My Recent IC-Bacteria Focus
I have zoned in on the bacteria factor this month because of a recent personal episode; for three weeks I was experiencing what I thought to be a very bad flare. However, neither my own product, URelieved, nor any OTC anti-histamines (I also take Benadryl for very bad flares) worked as they usually do. Obviously the light bulb came on with “Oh, I have a UTI”. I felt very foolish actually, because in most normal bladders people would automatically think UTI under these symptoms. Sadly, however, the delineation between having a UTI or a bad flare is sometimes worse than a calculus problem for people with IC. How do you tell if you are having a flare or a UTI? That is the exasperating position we are so often faced with!
I had not given much credence to D-Mannose before this episode – during the whole five years of having IC I had only tried it a few times, and certainly not consistently. In fact, I suspected it maybe irritated my bladder so I backed off of it a while ago. However, during this recent episode, I decided to take the D-Mannose ½ to 1 tsp, three times per day. I spaced it every four hours and also of course took URelieved as well as extra baking soda (I have heard that baking soda makes the D-Mannose work even better). Within 48 hours, the horrible constant urgency feeling was gone, and frequency was lessened – there was relief. Not perfection of course, but massive progress – the anxiety was down too, and less trips during the night.
Next I decided to live life on the edge and also try my new Copaiba Oil that I had purchased two months previously but had been too chicken to try. Interestingly, I found that one drop on the tongue or in a glass of water seemed to very quickly lessen my symptoms (not completely diminish them but significantly). I found this pretty incredible, but I was stumped. The Copaiba essential oil is said to act as anti-bacterial, ant-fungal (there’s the fungus thing again), anti-inflammatory, and as an analgesic. So which one(s) were at work here? I understand that the D-Mannose helped flush out some of the bacteria, but was the Copaiba just masking my symptoms much like Clove oil on a toothache, or was it acting to tamp down a flare, or was it helping to clear out bacteria or even fungus too?
And so all of the above led to this article with the zoning in on bacteria and IC and the many facets of the horrible two. It is my duty to disseminate IC information to as many people suffering with IC as possible, in hopes that possibly this could help others as it did me. You can purchase both the D-Mannose and Copaiba Oil on Amazon.com. Interestingly, another Copaiba Oil brand on Amazon states this: “In Europe, Copaiba is used as a remedy for chronic cystitis.” I think that this deserves investigating our friends across the pond and their findings on this!
Wishing all IC people continued relief and healing -