Interstitial Cystitis (IC) refers to an uncomfortable and annoying inflammatory condition of the bladder. The classic symptoms include urinary frequency and pain above the pubic region. The interstitial cystitis patient has a small capacity, irritated bladder. Urgency and pain intensity can vary greatly from patient to patient. No one is certain of the cause.
The incidence of IC is much greater in females than in males. IC begins gradually and becomes progressively worse. Symptoms may go away for a period of time (remission), but usually return. As with urethral syndrome, many other more common urologic problems are diagnosed incorrectly before the proper diagnosis is made. Interstitial cystitis must be diagnosed with the use of the cystoscope, an instrument which can directly visualize the interior of the bladder. Often, women’s symptoms get worse during menstruation.
Like women, men have often experienced difficulties in obtaining an accurate diagnosis of IC, but for somewhat different reasons. The symptoms of IC in men closely resemble those of non-bacterial prostatitis or prostatodynia. Although, in recent years, awareness of IC has increased markedly in the urologic community, IC is often thought to be a “women ’s disease,” and urologists do not always consider performing diagnostic tests that would confirm IC in a male patient.
Even when IC is diagnosed, it is sometimes difficult for a man to accept that he has this condition and that almost everyone who has the disease is a woman. In a survey one urologist made of 50 male IC patients, he found that men had seen an average of 3.3 physicians before their diagnosis was made. This was disturbing because, while women will usually see a general practitioner or gynecologist before going to a urologist, men ordinarily see a urologist first.
While there are numerous treatments for IC there is no outright cure. Medical treatments for interstitial cystitis have included overstretching of the bladder with water, instillation of a dilute silver nitrate solution into the bladder, and steroid use. Currently, treatments for interstitial cystitis are aimed at relieving symptoms rather than achieving a cure. For patients with only mild symptoms, nonprescription aspirin or ibuprofen may be enough to relieve bladder discomfort.
For some people, the pain and other negative effects of the condition may be aggravated by a variety of foods. The list can be very long but some of the commonly mentioned ones include tomatoes, spices, chocolate, caffeinated and citrus beverages, high-acid foods and artificial sweeteners. In order to determine which (if any) of these foods may be aggravating your symptoms, you might try eliminating all of these foods for a week or two, and then reintroducing them one by one, at weekly intervals. You may then be able to tell which ones cause you problems.
The discovery that the bladder cells of IC patients contain a toxin called APF, or antiproliferative factor, may mean that a faster urine test could be able to diagnose the condition. According to scientists, APF appears to decrease levels of HB-EGF, a growth factor that helps to repair a damaged bladder lining. Not only could the toxin point to a possible cause of IC, but also the discovery suggests that bladder growth factor might be used in the treatment of IC. However, further testing is needed to prove the research.
The Social Security Administration has ruled that IC can be incapacitating enough to legally render someone disabled.
A good site to visit for conventional information on this topic is the Interstitial Cystitis Association.
Please see the book recommendations found under the treatment link to an Alkalizing Diet.
Signs, symptoms & indicators of Interstitial Cystitis
(Severe) vulvar pain
Vestibulitis may sometimes be part of bladder and/or urethral inflammation as seen in the interstitial cystitis or urethral syndrome. The lining of both vagina and bladder arise from the same tissue during fetal development and thus when one becomes inflamed, the inflammation may spread to the adjoined areas.
Painful deep penetration during sex
Sexual intercourse can cause pain in people with IC
Urinary urgency
Counter Indicators
Absence of urinary urgency
Conditions that suggest Interstitial Cystitis
Risk factors for Interstitial Cystitis
Mycoplasma Infection
Ureaplasma and Mycoplasma as a group of organisms are the least investigated and are probably the greatest cause of more chronic urinary and gynaecological problems than any other class of bacteria. They should be considered as a cause of I.C. in women and nonspecific urethritis in men.
History of interstitial cystitis
Bladder infections
Interstitial Cystitis can lead to
Interstitial Cystitis could instead be
Prostatitis
Some researchers have suggested that CPPS (chronic prostatitis/chronic pelvic pain syndrome) is a form of interstitial cystitis/painful bladder syndrome (IC/PBS). A large multicenter prospective randomized controlled study showed that Elmiron was slightly better than placebo in treating the symptoms of CPPS, however the primary endpoint did not reach statistical significance.
Recommendations for Interstitial Cystitis
Arginine
Arginine, three grams per day in divided doses on an ongoing basis, can reduce symptoms. In some people with herpes, the arginine may need to be offset with lysine. The body also uses arginine to make nitric oxide, which helps to relax smooth muscles like those found in blood vessels and the bladder. Based on this known mechanism, arginine has been proposed as a treatment for various conditions that may be caused by limited blood flow. Some researchers theorize that arginine’s effects on nitric oxide synthesis might help relax the bladder, making it a useful treatment for IC.
People with interstitial cystitis have low tissue levels of nitric oxide. L-arginine, a protein building block, raises tissue levels of nitric oxide and relaxes bladder muscle spasms to help control the pain of interstitial cystitis. [Journal of Urology 158: 3 Part 1 (SEP 1997):703-708. 1.5 gm. L-arginine orally daily for 6 months. ]
Heparin
Heparin is a compound that has both anti-inflammatory and surface protective actions. While this drug can be given either by injection or by bladder instillation, the method of choice for the treatment of interstitial cystitis (IC) is bladder instillation. Heparin can mimic the activity of the bladder’s mucous lining, temporarily “repairing” the GAG layer, which may be defective in IC. It can be used as a primary treatment method, or as a “maintenance medication” to supplement other types of treatment.
A heparin solution of 10,000 units diluted with saline solution is instilled intravesically daily, and held in the bladder for 20 to 30 minutes. Patients can be taught to self-catheterize and do the treatments at home. After 3-4 months the frequency of instillations is reduced to 3-4 times per week. If there is no improvement in symptoms after 3 months, the dosage is increased to 20,000 units. It takes 3-6 months to begin to see improvement, but therapy should continue for at least 12 months and can be continued indefinitely.
Sublingual heparin (1000 units daily) has helped some people, at this dose there is no chance of anticoagulant consequences.
Artificial Sweetener Avoidance
Sugar substitutes like aspartame and saccharin may cause bladder irritation. The most difficult soda to tolerate appears to be diet cola, which is a quadruple whammy of carbonation, caffeine, aspartame and cocoa derivatives, four known bladder irritants.
Alkalizing Agents/Diet
Solving the Interstitial Cystitis Puzzle : My Story of Discovery and Recovery by Amrit Willis, RN, BSN focuses on alkalizing the diet. This diet also deals with chronic candida infection and food allergies which can be contributing to the problem of IC. Here is a comment by the author:
“In my search for my recovery from interstitial cystitis, I discovered several books that address health issues with respect to the pH of the body. I was aware that in the IC community it is common knowledge that persons with IC are intolerant of acidic foods and beverages. It is also known in the IC community that alkalizing elements can reduce the symptoms of interstitial cystitis. In my research, I uncovered that an alkali-forming diet can neutralize the acid load in one’s body and thereby assist in restoring one’s health. I wrote this book as a resource for persons suffering from interstitial cystitis because it seems so many of us have been unable to see the forest from the trees. It has been suggested that IC is a syndrome with a variety of origins, and I found this to be true. When one consumes an acid-forming diet, as most Americans do, drink acidic beverages, inhale contaminated acidic air, and live fast-paced stressful lives, one is going to develop a severe acid load in the body that must be neutralized. In order to bring about a balance and neutralize and escort out the acids stored in cells of the body, I discovered this could be done simply and naturally with a change in diet and lifestyle. I wish you a speedy recovery and hope that this book will bring a fresh new vision to understanding interstitial cystitis. I hope this book will also invoke more studies with respect to the pH factor and IC.”
Another book written by a urologist, Larrian Guillespie, MD called You Don’t Have to Live With Cystitis (1985) details a fundamentally dietary approach to interstitial cystitis. She discusses alkalizing the diet, and avoiding aspartates.
Many people also find that certain foods increase their symptoms. The most frequently cited offenders are coffee, chocolate, ethanol, carbonated drinks, citrus fruits and tomatoes. Although there are broad guidelines that most IC patients can follow, discovering which particular foods may cause you problems requires perseverance. Many IC patients report that restricting their diet is an effective form of treatment and believe that it is worth the effort. Some IC patients report that they have the least trouble with rice, potatoes, pasta, vegetables, meat and chicken.
Alcohol Avoidance
Avoiding alcoholic beverages may help reduce symptom frequency. Many have reported that there has been a direct relationship between alcohol consumption and flare ups of interstitial cystitis.
Caffeine/Coffee Avoidance
Keeping a voiding diary and record of suspected foods which have been consumed can be helpful. The list of possible offenders includes alcohol, caffeine, chocolate, citrus, tomatoes and spicy foods. Any or all of these should be eliminated to see if IC symptoms will be reduced.
Conventional Drugs / Information
One good reference for the various drugs used in this condition is from the Interstial Cystitis Association.
Antibiotics
The following is excerpted from an interview with B.J. Reid Czarapata, CRNP, CUNP, President, Urology Wellness Center.
I truly believe in the bacterial theory as a contributor to the IC condition. I do not particularly believe that IC is a urinary tract infection. The cultures are negative because not all bacteria grow well on an agar culture medium. (Agar is a solid growth medium used for some culturing techniques). It stands to reason that bacteria that grow in urine may prefer a fluid medium. So, we have taken from Dr. Fugazzotto’s work, where he grows bacteria in a soy broth medium.
Dr. Fugazzotto (who is now deceased) found that two main bacteria are found in interstitial cystitis patients. These were an Enterococcus and a Micrococcus. He found that when these people were treated with culture specific antibiotics that they got better. I wish to point out that these bacteria are gram positive bacteria. Most physicians will treat a UTI with antibiotics for gram negative bacteria, such as Bactrim
Dr. Fugazzotto had done a significant amount of work. He has published some of it. We have an independent lab in the metropolitan Washington DC area that uses Dr. Fugazzotto’s methods. We have gotten the same results. Most of the patients have a Micrococcus or Enterococcus infection. When we treat these with specific antibiotics, our patients are getting better.
I do wish to add that if we only treat with antibiotics patients get better but not all the way better and they frequently relapse when the antibiotics are stopped. However, if we treat with antibiotics in conjunction with the other treatments that we use, such as diet, biofeedback, pelvic floor rehabilitation, trigger points, exercises and treatment of yeast, etc., then the people seem to get 90 to 95% better.
When I use the antibiotics, I always use a yeast medication with it. An oral yeast medication. My preference is for Nystatin oral powder or oral tablets. Over the 7 years I’ve been in private practice and the approx. 400 patients I have treated, I have seen no resistances and only maybe 5-8 patients with some complications.
If the biopsies show positive for Mycoplasma or Ureaplasma, high dose doxycycline should be used. All the patients I have ever counselled with so-called Interstitial Cystitis have been found to have a species of these two organisms, Mycoplasma or Ureaplasma, upon correct urine sampling and vaginal swabbing. [Angela Kilmartin, authour of The Patient’s Encyclopedia of Urinary Tract Infection, Sexual Cystitis and Interstitial Cystitis]
People who have tried this antibiotic have reported that they have been helped by high dose doxycycline (100mg 6 times a day for 6-10 days), but others concluded that they were not helped.
Tobacco Avoidance
In people who have already been diagnosed with interstitial cystitis, symptoms may be less likely to flare up if the patient stops smoking cigarettes.
MSM (Methyl Sulfonyl Methane)
Stacy J. Childs, MD, of the University of Alabama, Tuscaloosa, recently described 6 patients with interstitial cystitis who benefited from MSM.
Reading List
There is a book (paperback or ebook) by Angela Kilmartin entitled The Patient’s Encyclopedia of Urinary Tract Infection, Sexual Cystitis and Interstitial Cystitis. Her website details what she believes to be the cause of this and other bladder condtions, which is an infection with Mycoureaplasma. Difficult to test for, this organism also only responds to one antibiotic.
Ozone / Oxidative Therapy
When used in conjunction with major autohemotherapy and a neural therapy technique known as the Frankenhauser injection, bladder insufflations of ozone have been very helpful. Interstitial cystitis should be approached with caution as overly aggressive treatment my irritate the bladder mucosa, often causing the patient extreme pain. This means that the dose should start out being low with a frequency of every 2-3 days decreasing to every 1-4 weeks. These cases frequently require 6-12 months of therapy before complete resolution is achieved.
“For the last couple of years, I have conducted a small clinical study using ozone bladder instillation to treat women who suffer from recalcitrant interstitial cystitis/chronic pelvic pain — pain that did not respond to traditional treatments. The results of this study are quite encouraging, and I would like to share them with my readers, just as I have with my colleagues at the International Pelvic Pain Society annual meeting in Orlando, Florida.
The idea of using ozone to treat IC/CPP came to me after reading about European doctors successfully using this treatment modality for patients with radiation cystitis. In the United States, Dr. Frank Shallenberger has also been using ozone for over a decade to treat Interstitial cystitis — with good success and minimal side effects. Dr. Shallenberger is a co-investigator in the ongoing study I presented in Orlando.”Dr. Emilia A. Ripoll, M.D..
DMSO Topically
A common and useful treatment for interstitial cystitis is the instillation of DMSO into the bladder. This is a medical procedure, not one to be done at home.
A DMSO cocktail consisting of 50cc of 50% DMSO plus 5,000 to 10,000IU of heparin, 10,000mg of triamcinolone acetonide or the equivalent, and 44mEq of bicarbonate was installed in 6 to 8 weekly therapies. Of the patients treated, 55% had either an excellent or a fair response. The average length of response was 10 months. If the patients had a good initial response they were placed on a monthly maintenance for 8 to 12 additional months. This occured in approximately 25% of patients. After this mixture was placed in the bladder, the catheter was removed and the patient asked to hold the medication for 15 to 40 minutes and then void. The DMSO or the DMSO cocktail is safe, effective and generally free of local or systemic side effects.
RIMSO-50 (DMSO) is being sold as indicated for the symptomatic relief of patients with interstitial cystitis. At over $50.00 for 50ml, this particular preparation seems overpriced. Never-the-less, here is some information about it.
Instillation of 50 mL of RIMSO-50 directly into the bladder may be accomplished by catheter or aseptic syringe and allowed to remain for 15 minutes. Application of an analgesic lubricant gel such as lidocaine jelly to the urethra is suggested prior to insertion of the catheter to avoid spasm, but is generally not needed in women. The medication is expelled by spontaneous voiding. It is recommended that the treatment be repeated every two weeks until maximum symptomatic relief is obtained. Thereafter, time intervals between therapy may be increased appropriately.
Key
| Weak or unproven link |
| Strong or generally accepted link |
| Proven definite or direct link |
| Strongly counter-indicative |
| May do some good |
| Likely to help |
| Highly recommended |
Glossary
Interstitial Cystitis
A chronic bladder problem involving a bladder wall that is inflamed and irritated. Symptoms include an urgent need to urinate, both daytime and nighttime; pressure, pain and tenderness around the bladder, pelvis and perineum (the area between the anus and vagina or the anus and scrotum) which may increase as the bladder fills and decrease as it empties during urination; a bladder that won't hold as much urine as it did before; pain during sexual intercourse; in men, discomfort or pain in the penis or scrotum. In many women, the symptoms get worse before their menstrual period. Stress may also make the symptoms worse, but it does not cause them.
Cystitis
Inflammation of the urinary bladder.
Steroid
Any of a large number of hormonal substances with a similar basic chemical structure containing a 17-carbon 14-ring system and including the sterols and various hormones and glycosides.
Chronic
Usually Chronic illness: Illness extending over a long period of time.
Bacteria
Microscopic germs. Some bacteria are "harmful" and can cause disease, while other "friendly" bacteria protect the body from harmful invading organisms.
Placebo
A pharmacologically inactive substance. Often used to compare clinical responses against the effects of pharmacologically active substances in experiments.