Interstitial Cystitis or Bladder Pain

Jennifer: In January I think I injured my back by moving a couch with a friend. In mid-January I was diagnosed with a bacterial urinary track infection. (I wonder if the two could be connected after reading *You Don’t Have to Live with Cystitis by Dr. Larrian Gillespie.) I have been watching my diet with some improvement, but my back hurts and I still do have urinary symptoms. I also have had gastrointestinal problems for many years. When I mentioned to my GI doctor months ago that I thought I might have Candidiasis Syndrome, he said there is no evidence to support that. He also asked if sugar made my symptoms worse. I said, “No, I don’t think so.” (This has since changed, I notice a big increase in bladder frequency and irritation with sugar consumption now). I did a little more research this weekend. I discovered some herbal remedies that are said to soothe the bladder — marshmallow leaf and slippery elm, cornsilk. These are demulcents. I am surprised I had not found anything on these before.

Tricia: I too had bladder problems, which I thought, was Interstitial Cystitis and underwent a cystoscopy etc. Once I diagnosed my candida problem and began treatment, my bladder problems have disappeared (almost two years now!!). I also had ulcerative colitis and for two years now I have had no stomach symptoms. I suffered for 10 years. Many people on this forum mention bladder problems and I do believe that candida plays a major role.

Luke: Although no one has found the exact cause of Interstitial Cystitis (intense bladder pain), it is pretty well agreed upon in the research community that IC has more than one cause. And the most popular causal theory for Interstitial Cystitis (IC) is what has been dubbed “leaky bladder“ a defective glucosaminoglycan (GAG)/epithelial lining. It is so similar to leaky gut. One proposed diagnostic test for IC is even a variation on the lactulose/rhamnose gastrointestinal permeability test. Interesting, huh? AND the one and only oral medication approved for use in the treatment of IC is Elmiron (pentosan polysulfate sodium), which is, you guessed it, a glucosaminoglycan or mucopolysaccaride.

My guess is that GAG-like substances such as glucosamine, chondroitin, aloe vera, and even spirulina potentially could help to “coat” leaky intestines. Perhaps even Elmiron would work who knows? I do know that patients taking Elmiron have to take it for months before they see improvement in their IC symptoms, but that is thought to be because very little of the substance actually gets to the bladder. The GI tract would be more accessible, I would think. There is even a company in Canada that markets a liquid form of chondroitin that is instilled into the bladder to help to coat the defective bladder lining in IC patients. Also, it does not seem clear that Elmiron actually repairs the lining of the bladder. Rather, it fills in the holes as long as you take it. But, I have seen evidence of IC patients remaining on Elmiron for a year or more and then cutting back or stopping it, and still remaining symptom-free.

Avandish: Liquid aloe is extremely acidic as a juice, but if this acidity is reduced by buffering with something, maybe it would be helpful. Also check the pH of raw aloe if you have it available. Maybe its pH is different. I have only tested the health food store bottled aloe from various companies.

Luke: Since I am used to working with interstitial cystitis (bladder pain) patients (including myself) who cannot tolerate acidic substances, I tend to recommend the following source for aloe. It is in capsule form, freeze dried, and apparently non-acidic. Most IC patients cannot tolerate the liquid acidic forms of aloe which are so readily available at most health food stores. This company has actually done research with their product and IC patients. Here is their contact information: *//www.DesertHarvest.com and phone 800-222-3901 . I have been meaning to try some of their product myself.

Polly: Infusions of MSM or DMSO are sometimes used to help bladder pain. One benefit is that the sulfur in these substances would help sulfate the GAGs and make them less leaky. Very large (40 g) oral doses of MSM has been shown to be helpful. However, make sure large oral doses of MSM are balanced with molybdenum, copper, and zinc, especially if this much MSM is used fairly regularly. You need to start with very low doses of MSM (250 mg) and gradually work up tolerance. You might make yourself quite sick if you don’t do this. If you are mercury poisoned, then large doses of MSM are not be a good idea. Small amounts may be tolerated though.

Bladder pain is sometimes caused by a pathogen that was not found in the routine cultures. Nick mentioned that when cultures are done for urinary infections, the culprit can be easily missed if the wrong type of culture medium is used. You need a culture medium that inhibits bacteria growth if you want to find a fungal infection. A selective fungal medium like Sabouraud agar may have to be employed. [13] Even then, there are many pathogens that are very difficult to culture.

Another possibility is that an infection elsewhere in the body is creating toxins that are damaging the bladder lining. For instance, just the TOXINS from the bacteria Clostridia Difficile have been shown to break down the tight junctions in the intestinal lining. [14] (The toxins can be identified in the urine by using the tests available at the Great Plains Laboratory. website //www.greatplainslaboratory.com and phone (913) 341-8949.

Bladder pain could also be due to the increased presence of mast cells in the bladder. If these break down, they release histamine and serotonin. This can cause inflammation and pain. One of our forum members said that he is having the most luck using treatments aimed at stabilizing the mast cells (preventing them from breaking down and releasing their contents inappropriately). He is using Elmiron, Atarax, and low dose Elavil. The drug Elmiron inhibits mast cell histamine secretion as well as supporting the GAG coating. Atarax is a certain type of antihistamine. Elavil is an antidepressant, but it also has some antihistamine and analgesic properties. These drugs are working better for him than antifungals. I’ve a few more suggestions. To stabilize the mast cells, use magnesium. Magnesium carbonate may even help raise the pH and help with the discomfort. Avoid food and inhalants that you are allergic to. Allergies to a substance will cause the mast cells to release their contents. I’d also avoid the seed oils since these unsaturated oils will cause cells to leak serotonin. [15] Glycine has some antispasmotic properties. It might be helpful for this reason. Glycine also counters many of the undesirable effects of serotonin. Diamine oxidase is a copper-containing enzyme that breaks down histamine. So make sure you have enough copper to keep the histamine levels under control.

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04-02-2013 (This post was last modified: 04-02-2013 02:21 PM by polly.)
Sometimes a low oxalate diet is quite helpful. If that helps you, there are forums that discuss this diet and related nutritional needs. For instance, calcium taken 20 minutes before a meal will help bind oxalates in your meal. More biotin is needed if you have high oxalates.

Possible nonbacterial agents to consider include:

Viral
Mycobacterial
Chlamydial
Fungal
Schistosomal

I came across an article about Small Intestine Bacterial Overgrowth (SIBO) that said there was a recognized overlap between IBS and interstitial cystitis and an overlap between SIBO and IBS. The authors went on to speculate on the reason that SIBO could contribute to interstitial cystitis. This is what they said.

Possible role of SIBO and IC pathophysiology

•Hydrogen sulfide–Contracts detrusor muscle–Activates extrinsic sensory nerves
•Mast cell deposition in bladder– Degranulation triggered by LPS – Involvement shown by elevated urine tryptase levels
• Substance P staining nerve fibers near mast cells in bladder and colon
• IL-6 elevated in urine

Their article on SIBO can currently be found at this link.
//www.gidoctor.net/client_files/fil…_Final.pdf

Principles of Integrative Gastroenterology

Systemic Signs of Underlying Digestive Dysfunction and Disease

Laura K. Turnbull, BA,MSNc

Gerard E. Mullin MD

Leonard B. Weinstock MD

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