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Interstitial Cystitis

Interstitial cystitis, also known as Bladder Pain Syndrome (BPS) or Painful Bladder Syndrome (PBS), is a name that is given, amongst others to describe the frequency, urgency, pressure and/or bladder pain that some people experience on an ongoing basis for many years. It can be ulcerative and non-ulcerative, depending on the presence or absence of ulcerations in the bladder lining. Ulcerations in the bladder wall are known as Hunner's ulcers.

"Interstitial cystitis (IC), also known as bladder pain syndrome (BPS), painful bladder syndrome (PBS) or hypersensitive bladder syndrome (HBS), is a condition that results in "an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes." 2009 new American IC/BPS Guidelines .

What are the symptoms of interstitial cystitis?

The symptoms of interstitial cystitis vary greatly from one person to another but whether ulcerative or non ulcerative they have some similarities to the symptoms of a urinary tract infection. They include:

  • Decreased bladder capacity.
  • An urgent need to urinate frequently day and night...
  • Feelings of pressure, pain, and tenderness around the bladder, pelvis, and perineum (the area between the anus and vagina or anus and scrotum.
  • Painful sexual intercourse.
  • Discomfort or pain in the penis and scrotum.

Theories about the cause of interstitial cystitis are many and varied and even include a form of autoimmune disorder, or that an unidentified organism may be producing the damage to the bladder, causing the accompanying symptoms.

When a person presents with chronic cystitis and the bladder is examined, little wounds will be observed; these are called Petechial hemorrhages and it is then that the ulcerative or non-ulcerative condition is diagnosed.

Symptoms vary greatly from person to person, but all include an urgent need to urinate (urgency), a frequent need to urinate (frequency) and, for some, pressure and/or pelvic pain. People with severe cases of IC/PBS as opposed to cystitis may urinate as many as 60 times a day, including frequent nighttime urination (nocturia).

The University of Maryland (led by Susan Keay) isolated a substance found almost exclusively in the urine of people with interstitial cystitis. They have named the substance the antiproliferative factor (APF), because it appears to block the normal growth of the cells that line the inside wall of the bladder. This explains why it may take longer for an IC sufferer to heal as opposed to a regular cystitis sufferer.

Interstitial Cystitis and labelling

A huge number of bladder problems, ranging from painless but frequent urination through to severely crippling and debilitating bladder pain that gets worse as the bladder gets full, are labelled under the general heading of 'interstitial cystitis'.

"It's a non malignant, non infective condition which may be associated with changes that are apparent when you look at the bladder, but sometimes the bladder may appear absolutely normal, [although] the patient may be crippled with discomfort."

Dr Helen O'Connell, consultant urologist - Royal Melbourne Hospital.

Other possible causes of the symptoms found in Interstitial Cystitis include physical abnormalities such as prolapse of the bladder, vaginal infections, urinary tract infections or disorders, endometriosis, bladder cancer, sexually transmitted diseases, and kidney stones. Tests may be necessary to rule out these causes.

When blockages, physical abnormalities, and symptom-causing diseases are ruled out, the absence of infection, when combined with pain or frequent urination, is the over-riding factor that can lead to a diagnosis of interstitial cystitis.

Triggers for Interstitial Cystitis (IC)

Some people believe that certain foods such as tomatoes, spices, alcohol, chocolate, caffeinated and citrus beverages and high-acid foods may add to bladder irritation and inflammation. Others notice that their symptoms get worse after eating or drinking products containing artificial sweeteners. If you believe that your interstitial cystitis is related to your diet, try keeping a diary of food and symptoms. Or try cutting out all of the above, and gradually introducing them to see what the trigger is.

Unfortunately, the triggers are not always detectable. Interstitial cystitis can affect otherwise healthy individuals for no apparent reason. However, it is likely that diet and lifestyle plays a part, and it has recently been accepted that previous antibiotic use for one or more bladder infection may kill E. Coli but leave fragments of the bacteria bio-molecularly attached to lining of bladder and urinary tract. This can cause long-term irritation of the bladder, making it painful to fill the bladder completely, leading to frequent urination, gradual shrinking of the bladder, and the beginning of a cycle that can be very difficult to break.

The U.S. microbiologist Dr. Paul Fugazzotto, believes that interstitial cystitis is caused by gram-positive bacteria, usually enterococcus, but others believe that gram negative bacteria can also be involved. Our own experience is only with Interstitial Cystitis related to E.Coli and Salmonella.

Possibilities

  • D-Mannose can help to detach bacterial fragments if they are present.
  • Dietary changes may help. For example, alkalising urine  through food choices.
  • Antibiotics seem to bring some relief to some sufferers.
  • Bladder training to stretch the bladder. Try holding it in as long as you can.
  • Stress reduction, and low-impact exercise are said to reduce symptoms.

Over the last eight years, D Mannose has given relief to literally thousands of IC sufferers and with daily use over a few months they have reported that their symptoms no longer trouble them.

Dr. Fugazzotto IC Research

I am an IC patient who has worked with Dr. Fugazzotto and who has sponsored research into his work and findings. He worked in his home lab after retiring and spent his time culturing for patients who sent him specimens. It was his belief that typical lab culturing was not adequate to find many species of bacteria. So he used a broth culture which had been used for years but fell out of use when new methods were developed. There is still one lab, United Medical Lab, near Washington DC that will perform broth culturing for patients. Many patients are diagnosed with interstitial cystitis when no bacteria are found, and yet using a broth culture he was usually able to isolate a pathogen. He believed the main culprit to be Enterococcus, a form of Streptococcus.

I am sure I have passed this information on to you in the past. I just recently read your section on E. coli infections and the possibility that the bacteria form biofilms which enables them to hide from treatment or host defences. I wanted to forward to you an article about Dr. Scott Hultgren of Washington University in St. Louis, MO. He is the best-known UTI researcher in the US and you have probably heard of him. I subscribe to an online newsletter and they had an article about his findings of biofilms in the case of E. coli: www.biofilmsonline.com

He has not published any more data about his findings of other types of bacterial biofilms in the bladder. But I read an article by Japanese researchers several years ago that described their finding of enterococcal biofilms in urinary tract patients: escholarship.lib.okayama-u.ac.jp

They have not made a connection between Enterococcus or any other species of bacteria and IC but many of us believe that we harbour other types of bacteria that can also form biofilms. It is my understanding that all, or almost all, kinds of bacteria are capable of forming biofilms. The NIH claims that 80% or more of infections are biofilm-related. Therefore, it is very probable that UTIs involve biofilms and I would carry it one step further and say that it is probable that IC is also caused by uncultured bacteria hiding in biofilms in IC patients. According to the Japanese, biofilms can be polymicrobial.

In our research into Dr. Fugazzotto's findings we confirmed that Enterococcus was found more commonly in IC-diagnosed patients.

This was presented at both the American and Canadian Societies of Microbiologists meetings. We have not been able to publish this paper as yet, and as you know medical research takes a long time to make it to the physicians in clinical practice. As biofilms become more well-known the medical community may make the connection. Current culturing is not adequate and if it were they would find more species of bacteria in all patients symptomatic patients would not be put in the IC category and could be treated for any type of bacteria found. The remaining issue is that those bacteria still in biofilms are not treated since the antibiotics cannot penetrate the films. We know many are working on substances that can break up a biofilm. One being used by some practitioners is EDTA. There are a few others but this is a huge challenge right now.

I wanted to pass this information on to you since I know you are trying to help treat the many sufferers of UTIs. I think Dr. Hultgren will eventually put all of the information and research together although so far he has not revealed anything further than the finding of E. coli biofilms. He has a large research facility that recently opened and I understand that he is going to do a study of IC patients and possible infections.

If you read through this article you will see that he mentions interstitial cystitis as one of the infectious diseases being studied. This is the first time I have seen a prominent researcher refer to IC as an infection although he has not published any research to show how he determined this connection.

I am passing on the above for your information. If you have any comments about my speculations I would appreciate hearing from you. It is very difficult for us to make any headway with the medical establishment but there are many of us who believe in the IC-bacterial-biofilm connection. We have an MD in Texas who does biofilm research and is treating diabetic wounds in which he finds biofilms and has offered that his lab will do a study if we can provide biopsies from IC patients. He has a method of detecting biofilms in biopsy material but we have not been able to find doctors who are willing to provide the biopsies. I am sure we will eventually. He was not familiar with IC but he told us that any time you find chronic symptoms and inflammation there is a good chance there is a biofilm infection.

I am very impressed with your work and thorough explanation of E. coli infections. I just thought I would let you know what other information some of us have gathered involving IC as an infection also.

Sincerely yours,

M. Foster, Patient Advocate and Research Sponsor

For further information please visit E-coli related bladder infections in the info section.

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Anna's story

Anna’s Story

Sweet Cures’ Anna talks about her years long battle with cystitis and how she finally overcame it.

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