Interstitial cystitis (IC) is a painful bladder condition that, in the research, is usually described as being of ‘unknown etiology’  i.e. the true cause is unknown.
Several researchers have suggested that IC should be called ‘Painful Bladder Syndrome (PBS)’ or ‘Bladder Pain Syndrome (BPS)’ .
When we talk about a syndrome (such as IBS – Irritable Bowel Syndrome), we normally talk about an array of similar symptoms for which the causes are not known or for which several causes could exist.
If you’ve been following my blog, you will have seen several articles about different root causes of IC. This begs the question: is IC really just one disease? Or could it be several conditions, resulting in similar symptoms in the bladder?
Let’s have a look at some potential root causes:
Missed bacterial or fungal infections
Evidence suggests that the current gold standard testing for urinary tract infections misses around 67% of infections  – a pretty high number!
Interstitial cystitis is usually a diagnosis of exclusion, i.e. a possible infection has been ruled out via a negative urine culture test. However, with the test missing infections, how many cases of ‘IC’ could actually be urinary tract infections?
Moreover, there is a chance of fungal infections of the bladder that might not even get picked up by tests and would not respond to antibiotics (but rather antifungals).
Often a result of missed infections, hidden infections are even less likely to get picked up by testing. They are also less likely to respond to standard antibiotic treatment.
By being allowed to remain in the bladder after an acute infection, bacteria have the ability to ‘hide’ in the bladder in two ways:
- Intracellular Infections: The bacteria manage to infiltrate bladder cells and live there hidden from tests and antibiotics. When cells shed, the bacteria enter the bladder again to cause a ‘flare’ after which the cycle begins once again. This can cause inflammation in the bladder, making it look red.
- Biofilm Infections: The bacteria can also build biofilms a shelter under which they can hide and multiply.
Note that both could be present at the same time. Both are treatable!
Dysbiosis is a term used to describe an imbalance between good and bad microbes in the body. The right balance of microbes is important for our health.
The bladder is in fact not sterile, but houses its own community of microbes. Dysbiosis has been found to be present in IC and can go hand in hand with missed or hidden infections – when good bacteria are diminished, pathogens have it much easier to take hold.
Antibiotics (and especially broad-spectrum antibiotics commonly used for UTIs) kill all bacteria, good and bad. This doesn’t just affect the bladder but also the gut and may explain why many IC sufferers also have IBS.
Damage to the Bladder Wall (GAG-Layer)
The GAG-layer is a protective layer on the bladder wall and has been found to be damaged in many IC sufferers. Whether this is a result of something else (e.g. infections) or a direct cause is not clear.
I can imagine that nutritional deficiencies of the ‘building blocks’ needed to sustain this layer could play a role.
A ‘Leaky’ Bladder
A hyper-permeable gut (a.k.a a ‘leaky gut’) has been the buzz-word in the alternative health world for a while now but is making its way into mainstream medicine as well.
I have hypothesized that this could also be the case in the bladder, i.e. the barrier function of the bladder wall is diminished and particles that shouldn’t normally get through, manage to get into the bloodstream and to nerves, thus triggering symptoms.
This in turn could have different causes, for example toxins from the environment/diet or those excreted from pathogens in the bladder.
Kathleen’s story is a good example for this – she recovered from her ‘IC’ symptoms when she removed the weed-killer Roundup and everything else containing Glyphosate from her life.
This might sound far-fetched but has some logic to it: all the nerves connecting the bladder to the brain run through the spine. If there are problems with the spine, these nerves could be affected. This could lead to symptoms in the bladder. Therefore, if there are back problems and bladder problems present at the same time, this bladder-back connection should be investigated.
Chronic inflammation is a result of a mismatch between our immune system and the environment. Whilst inflammation in the bladder could be the result of any of the other root causes listed here, it could also be a result of things (e.g. infections) going on in other organs or stress and lifestyle factors.
Allergies, Mast Cell Activation Disorder or Autoimmunity
Allergies, Mast Cell Activation Disorder (MCAD) or autoimmune are linked to inflammation, caused by the immune system going haywire. Inflammation is a big part of all three.
Allergy symptoms result from mast cells and other immune cells excreting pro-inflammatory chemicals. Mast cells are often raised in IC and therefore an allergen entering the bladder could lead to a flare of symptoms.
Similarly, in Mast Cell Activation Disorder, mast cells become ‘hyperactive’ and release a lot of pro-inflammatory chemicals. MCAD may be a result of hidden infections (not necessarily in the bladder), allergies or heavy metals.
There has also been the question whether IC could have an autoimmune component, i.e. the body’s immune system attacks its own tissue (in this case the bladder tissue). IC is often present together with other autoimmune conditions. Lupus, may in itself cause IC (called Lupus Cystitis)  as it is an autoimmune condition where the body attacks its own tissues. Sjoergen’s can also result in ‘IC’ (due to ‘drying out’ of tissues most likely) .
While probably not a main cause for IC, high oestrogen levels can activate mast cells in the bladder, which are responsible for secreting pro-inflammatory chemicals that can be responsible for many of the symptoms experienced during an IC flare.
So there you have it: an array of root causes that could lead to the same symptoms. Sometimes more than one of these could be present and sometimes maybe only a single one.
Finding the root cause individually should guide treatment.
In light of the information we have I’d argue that indeed ‘Painful Bladder Syndrome’ or ‘Bladder Pain Syndrome’ would be better names to describe the bladder symptoms experienced in so called Interstitial Cystitis.
Trying to put a disease name to symptoms can be helpful but in this case I’d argue it’s not helping the sufferers receive the best treatment.
And at the end of the day helping people get better is more important than finding labels for symptoms.
What do you think could be at the root of your symptoms? Is there something I missed? Let me know in the comments!
Pin it for later:
- Huma Siddiqui et al Alterations of microbiota in urine from women with interstitial cystitis BMC Microbiology 2012 12:205 https://bmcmicrobiol.biomedcentral.com/articles/10.1186/1471-2180-12-205
- van de Merwe JP et al Diagnostic criteria, classification, and nomenclature for painful bladder syndrome/interstitial cystitis: an ESSIC proposal. Eur Urol. 2008 Jan;53(1):60-7. Epub 2007 Sep 20. https://www.ncbi.nlm.nih.gov/pubmed/17900797
- Price, Travis K. et al. “The Clinical Urine Culture: Enhanced Techniques Improve Detection of Clinically Relevant Microorganisms.” Ed. B. A. Forbes. Journal of Clinical Microbiology5 (2016): 1216–1222. PMC. Web. 15 Nov. 2017. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4844725/
- Shimizu A et al Lupus cystitis: a case report and review of the literature. Lupus. 2009 Jun;18(7):655-8. doi: 10.1177/0961203308099634. https://www.ncbi.nlm.nih.gov/pubmed/19433468
- Liang, D., Lu, J. & Guo, A. Sjögren’s syndrome accompanied with interstitial cystitis: a case report and review of the literature Clin Rheumatol (2014) 33: 1189. https://doi.org/10.1007/s10067-013-2480-3
EdithMarch 5, 2018
That’s really interesting about jogging – I am not a jogger, but find I have a massive flare-up of my IC symptom after an hour on the ride-on lawnmower – have been taking note and it definitely worsens the pain etc. And the Glyphosate – had not thought of that either. Thanks. Edie