One problem of interstitial cystitis (IC) is bladder shrinkage. After 10 years of the disease my bladder capacity shrunk to 600cc which isn't much. I hate to give bad news, and I understand well your confusion. So I will give you some answers, be it in summarized form. This means there are articles out there about what I've learned but I'm just giving you leads to that research. For starters, being a "contested illness" like CFS, understanding of IC is still very primitive since they felt need to dispute its reality. However, research into it is gaining ground. The latest report is that several different types/subsets of IC have been found.
One subset is ulcerative IC which I have. One study found BK virus present and active in ulcerative IC patients. This virus is in most people's bladders but only IC patients and people on immunosuppressive drugs after kidney transplant have symptomic BK virus.
In another subset of IC, Epstein-Barr Virus was found in the bladder. Very interesting since EBV has been found in both CFS and fibromyalgia patients. However in CFS, EBV is found but not considered a cause of CFS. EBV was only found in some CFS patients, in other words.
A chemical only found IC patients urine called, "Antiproliferative Factor" was discovered a few years ago. This chemical is a siagloglycopeptide and this class of chemical was only found to be produced in the human body prior to this by certain cancers. Antiproliferative factor production traces back to gene p53, a gene which orders cell death. It's a gene heavily studied by cancer researchers since it's the gene which should order cancer cells to die. More recent studies about IC found that mitochondria in the bladder seem to instigate the order for cells in the bladder to die. Mitochodria are said to order this cell death as means to protect themselves. Antiproliferative factor is an official IC biomarker and some day may be the foundation for an IC test which can be conducted non-invasively. However, last I checked, the FDA had as yet to approve that test.
One set back with IC knowledge has been that there is only one test used to detect for bacteria in bladders and this test centers around finding e-coli bacteria. IC researchers have complained that the failure to culture long enough to detect other bacteria in human bladders may miss any other types of bacterial infection. Some researchers think bacteria and fungi shouldn't be ruled out in IC cases. Some IC patients get improvement upon taking certain antibiotics. Macrobid helped my IC and has helped other IC patients. Also, a special diet with non-acidic, non irritating foods causes some people's IC to go into remission. You have to approach your diet with IC like an allergy, in the sense you identify what foods aggravate it. However, there is a general list of foods IC patients should avoid if they seek to reduce pain, urgency and frequency. Coffee is the worst thing an IC patient can consume. I recommend avoiding coffee at all costs. We IC patients use coffee alternatives like Kava.
Felines get interstitial cystitis. Tony Buffington, a veterinary research at Ohio State University studies feline IC. He developed a blood test for human and feline interstitial cystitis using a novel approach of sending light into a blood sample to detect abnormalities this way. He succeeded. So something is in the blood of IC patients.
CFS, endometriosis, fibromyalgia, lupus and Sjogren's Disease are comorbid to IC. So research into these diseases is something I'd recommend. CFS has a unique cytokine signature, so does IC, though each aren't identical- there are similarities though. Cytokines are produced by mast cells and these are the main drivers of disease symptoms in both CFS and IC. Some doctors treat IC with antihistamines. These don't cure but help.
Recent research has found there is a urinary microbiome just like a gut microbiome. Researchers found a deficiency of lactobaccillus in the microbiome of IC patients. What this means I can't tell you.
Back 10 years ago some studies noticed abnormal ATP signalling in IC patients bladders. ATP is adenosine triphosphate and it relates to energy metabolism. I noticed some articles here about recent threads about
ATP and CFS.
See, if you really study this stuff, you will see exactly what you see in CFS. ATP in the bladder? Who'd have thought that? What does it all mean? It means something is really wrong, we don't understand much at all about the human body. Why is there so many similarities at work in IC patients, CFS patients, fibro patients? Good question. Again we don't know that much. I think we could find the cause of CFS and all related diseases if we really understood all the mechanisms involved. And who could imagine a human bladder is this complex?
It always feels to me the answer to these questions is there. We just have to be creative and open minded in terms of how we think of the problem. Or we get researchers who can think in these terms and work for us. So take heart, it's not all bad. In my case, heparin bladder installations worked the best. In the ulcerative type of IC patients became symptom free for 8 months after having antiviral medication instilled in their bladders. I had some success upping the dosage of oral antivirals. It's not hopeless, just problem no one bothered to understand, much like CFS. Best wishes!
I would also like to add that I think that maybe if IC really is part of this general disease profile in patients with CFS, fibro, etc. it is worth it for people who don't have it but have CFS, etc. to study it. It has similarities to all these diseases but since the biochemistry of it is limited to a particular region of the body, it is in some ways easier to study. Plus, understanding brain chemistry in diseases like CFS is much harder. You can't cut into a brain, culture tissue there and check for chemicals as easily as can be done in a bladder. Since in neuroimmune disease you're limited to testing spinal fluid, etc. you have limitations in terms of studying it.
Plus other symptoms too, lets say bladder is not functioning smoothly and automatically as it used to be. I have to think about it, constantly check the watch, check for bathrooms etc.