Dr. Jay Burstein Dekalb Clinic 217 Franklin St. Dekalb, IL 60115 815-758-8672 Dr. Jay D. Burstein is a Board Certified Urologist specializing in painful voiding syndromes and incontinence.

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Created: February 2001
JO & JB

Q & A with Dr. Jay : February 2001

Please remember that Dr. Jay does NOT give personal medical advice via the web. Always review any information that you receive on-line with your personal medical care provider. Only your personal doctor can and should make medical recommendations to you.

In this issue:

127: Are bladder spasms associated with IC?
128: Vaginal thrush and IC. Is there a connection?
129: Are there any patterns of remission and recurrance.
130: Localized pain and IC
131: Is Uristat, an over the counter urinary pain relief tablet, good for mild flare ups of Interstitial Cystitis?
132: Is burning and dryness of the vagina a symptom of IC?
133: Is it safe to have hydrodistensions regularly
134: What, if any, are the differences between IC and trigonitis?
135: Could a person have IC when he or she was a young child.
136: When is it okay for a person with IC to consume alcohol in small amounts?
137: Polycistic Kidney Disease
138: Can vaginitis be connected to IC?
139:Can antispasmodics make frequency/urgency worse?
140: I've read that Atarax helps with IC but shouldn't my Allegra have the same effect?
141: Do you know of any non-soy hormone replacement for IC patients?
142: Is there a close relation between Trigonitis and IC?
143: Bladder & urethra shrinkage
144:Using narcotics to treat IC pain
145: Is DMSO appropriate for a patient who also has polycystic kidney disease?
146: Can a patient have IC even though they don't find pinpoint bleeding during hydrodistention?

Q127: Are bladder spasms associated with IC? I recently went to another Urologist b/c I felt the first one misdiagnosed me with IC. This Urologist did a test on the bladder that is visual on a computer and it shows how it empties and fills, during this test my bladder was spasming so bad we stopped twice. This doctor is confident that I am having severe bladder spasms and that was causing the pain I was having with urination. How long should I take this Detrol and what other problems can come from bladder spasms? Thanks for your help!

A: The test you had is called a cystometrogram and measures the ability of the bladder to hold a water load and its ability to stretch to accommodate that water volume. The spasms you had are called uninhibited bladder contractions and can occur in a variety of bladder disorders. Bladder spasms are a sign of an underly problem and you must further question your doctor as to its specific cause. A partial list includes interstitial cystitis, bladder stones, and severe chronic inflammation of the bladder lining. Detrol and other medications that help control bladder spasms are typically prescribed for long- term use.

Q128: I have had very mild symptoms of IC for the last 3 months since commencing L-arginine. However after a bout of vaginal thrush I have now had more severe symptoms (especially pain at the end of urination) for nearly 4 weeks without remission which is extremely unusual for me. The vaginal thrush was treated successfully with Canesten but I was wondering whether you can get thrush in the urethra/bladder and whether this could account for the sudden flare in IC symptoms. If this is the case what is the best treatment?

A: Thrush is an infection caused by the yeast Candida Albicans. It is very common and responds well to a variety of medical treatments. Yeast infection in the bladder is very rare and usually occurs secondary to chronically debilitating illness such as diabetes or to overuse of antibiotics that allows overgrowth of yeast. IC is very frustrating because we have no idea as to its underlying pathologic cause. But IC sufferers are well aware that any increase in stress, including vaginal infection, can predispose one to symptoms of flare. In your case it would be valuable to rule out an active bladder infection. Be sure to see your urologist for further care.

Q129: I would like to know about IC remissions. Are there any patterns of remission and recurrance. Does IC ever just disappear?

A: IC flare is highly unpredictable. I have discovered that treating IC early and aggressively tends to decrease the intensity of recurrent symptoms and increase the duration of remission, but the natural history of IC cannot be predicted.

Q130: My urologist suspects that I have IC. I've read about burning pain, but I get an intense, non-burning pain when I bear down to urinate and also when I blow my nose. The pain seems to come from deep inside on my lower right side of my abdomen. I haven't seen anyone else describe this type of pain with IC. Have you heard of this happening and is it common in IC patients?

A: Your description of pain is unusual for IC and may represent symptoms of other pelvic pathology. As an example, prior surgery could cause scarring, called adhesions, that could produce pain with straining. Also, an enlarged ovary or other pelvic organ inflammation could likewise cause these symptoms. It may well be that you have IC or pelvic floor dysfunction but it appears, in this case, that further evaluation is need to rule out any coexisting problems. Be sure to discuss this with your physician.

Q131: Is Uristat, an over the counter urinary pain relief tablet, good for mild flare ups of Interstitial Cystitis?

A: Uristat is a weaker formulation of the prescription drug Pyridium. Its chemical name is phenazopyridine and is a urinary anesthetic that can provide symptomatic relief of IC pain, burning and frequency but does not affect the underlying cause of the disease. It is most often used during the first two days of a urinary tract infection. Uristat contains 95 mg and is recommended by its manufacturer (Ortho) that two pills be taken after meals three times a day for no longer than two days. Pyridium is typically prescribed as a 200mg dose three times daily. Be prepared to see a yellow-orange color change to the urine as this medication is known as an azo dye and can also discolor contact lenses. Be sure to let your doctor know if you are taking these over the counter medications and read all labeling carefully.

Q132: I have been to two doctors in the last three months and had many tests done and all came back negative. Then this new docter did a test on me and said I have IC. My symptoms are not the same as IC. Although I do go to the bathroom alot, But the main problem is burning and dryness of the vagina, and much pain by my overies.Is this part of IC?

A: IC is a pain-frequency syndrome and it is apparent that IC should be considered as a possible cause of your complaints. A disease that is also associated with IC is called vulvodynia that is usually described as a burning or throbbing pain of the vaginal area.

Basically there are three ways to classify vulvodynia:
1) Caused by skin disease such as herpes, loss of estrogen effect, or yeast infection
2) Dysesthetic vulvodynia results in constant vaginal pain and usually occurs in postmenopausal women
3) Vulvar-vestibulitis syndrome usually occurs in young women and the vaginal area hurts only when touched.

These problems are usually treated by gynecologists. Since you also complain of pain in your ovaries, a full gynecologic evaluation should be obtained. You may be suffering from a combination of IC and vulvodynia.

Q133: Is it safe to have hydrodistensions regularly ?

A: For reasons unknown, hydrodistension somehow alters the nerve transmission in bladder pain fibers. Not only does hydrodistention confirm the diagnosis of IC with the appearance of glomerulations (pin-point bleeding), it may also be therapeutic and provide significant pain relief and remission for many patients. . This is a very safe procedure done with monitored spinal or general anesthesia and can be performed as clinically indicated. The frequency of treatments is variable and depends on an individual's distinct clinical course. If relief is not apparent then a repeat distension can be done. Please remember that there are some risks associated with general anesthesia. Talk with your doctor about any concerns that you have.

Q134: My urologist has diagnosed my condition as trigonitis. I can find little information on this disease and read that the symptoms are very similar to what I read about IC. What, if any, are the differences and what about treatment. My physician says there is no known cause nor treatment for trigonitis.

A: This is a review of question 125: Trigonitis is a non-specific reference to changes seen on a portion of the bladder floor called the trigone when evaluated with a cystoscope. It is a "generic" term commonly used by urologists and typically refers to squamous metaplasia.

The trigone is a triangular structure with boundaries between the two ureteral orifices (the openings that bring urine down from the kidney) and the bladder neck (the funnel portion of the bladder where it meets the urethra). Squamous metaplasia is also called "pseudomembranous trigonitis". It occurs when normal bladder lining cells (urothelium) are replaced with squamous (skin-derived) cells. It appears as a white, patchy, bumpy area on the trigone and bladder neck region: kind of like a thin white membrane.

The trigone is derived (embryologically) from the same origin as the vagina and therefore responds to changes in estrogen levels. The changes in the trigone as described above are actually due to low levels of estrogen and do not represent a pathologic or disease state. This is typically found in postmenopausal women but can also be found in younger women with fluctuating levels of estrogen and in men treated with hormones for prostate cancer. Autopsy studies have shown squamous metaplasia to occur in the bladder of nearly half of women and fewer than 10% of men. This then represents a normal finding and is not associated with inflammation and does not produce any symptoms.

Why so many patients are told they have "trigonitis" is a question I cannot answer. However, if symptoms persist, a distinct, pathologic diagnosis is mandatory by obtaining further studies, such as hydro distention to rule out IC, or even seeking a second opinion.

Q135: Could a person have IC when he or she was a young child. I can remember having problems with my bladder even when I was young girl. It wasn't until recently that I was finally diagnosed with IC.

A: IC is typically a disease of adulthood but there have been many well-documented cases occurring in childhood.

Q136: When is it okay for a person with IC to consume alcohol in small amounts?

A: It depends on how severely one reacts to alcohol ingestion. If you are in remission you may want to try a small amount to see if it can be tolerated knowing full well that a major flare could occur if you are sensitive to its effects.

Q137: I have been having abdominal pain for a couple of months now. A sonogram and subsequent CT scan has indicated cysts on my left kidney. According to my doctor, cysts would not normally be a problem; however, in this case, they are pushing on my uriors [I may have misunderstood the word]. I am to see a urologist soon, but in the meantime, could you provide me with some information regarding this condition, possible treatment and possible negative effects. I am a 39 year old male in good health and physically fit. Thank you.

A: Not enough information to go on. Be sure to ask your new urologist for a full explanation.

Q138: I have been diagnosed with IC after 9 months pain in my pelvic area. I had potassium injected into my bladder and had a 3 reaction. I am now on 3 types of meds. I also have gardneralla. Could this vagintis have something do with IC or vice or versa. Should I go to ob/gyn or stay with the same primary Doctor?

A: You happen to have two different problems at the same time and they are not really associated with each other. However, many patients with IC can have a flare that may be produced by stress factors that may include a vaginal infection. In fact, many IC patients have described bladder infection as an initiating event in the development of their disease.

Q139: I have recently been diagnosed with IC. My main symptom is urgency/frequency. My doctor has prescribed Detrol and Levbid on two separate occasions and they made the urgency/frequency much worse. Is this common?

A: This is an unusual response to these medications and may reflect bladder problems other than IC such as poor bladder emptying and dysfunctional voiding. Follow through with your urologist.

Q140: I take Allegra for allergies. I've read that Atarax helps with IC but shouldn't my Allegra have the same effect? Don't all antihistamines do basically the same thing?

A: Many patients with IC have increased numbers of mast cells in lining of the bladder (urothelium). Mast cells contain histamine, a substance that causes inflammation when released from these cells. Antihistamines are useful in IC because they prevent the release of histamine.

Allegra and Claritin are newer antihistamines that are more specific to the histamine receptor and have less sedation than the older formulations such as Atarax and Vistaril. (hydroxyzine). Another medication, Zyrtec, is a metabolite of hydroxyzine and has significantly less sedation. Theoretically, any antihistamine may be effective for IC but clinical studies for these newer agents are lacking. It may be that the side effects of the central nervous system, (fatigue and drowsiness), somehow modulate pain reception and thus be responsible for the symptomatic relief so often obtained with these agents. This is especially apparent when antihistamines are used in combination with amytriptyline (Elavil).

Q141: I have a friend who has had the classic symptoms of IC, frequency, urgency, pain, blood, etc., After hydrodistension recently, the doctor said she does not have IC. Is it possible for the test to be false, and IC show up later in the early stages?
Do you know of any non-soy hormone replacement for IC patients?

A: There is no specific test to diagnose IC. This is a spectrum disorder that requires a high index of suspicion on the part of the doctor in order to make an appropriate diagnosis that is based on symptoms AND signs of clinical findings. The finding of pinpoint bleeding (glomerulation) is not required to make a clinical diagnosis of IC. You are correct: this may represent an early case. Treatment should not be withheld.

Q142: I was diagnosed with Trigonitis in August, 2000. I have been on Trimethoprin on and off since then for this and it will go away and then come back - is there a close relation between Trigonitis and IC? I'm not sure I necessarily understand what trigonitis is, let alone IC.

A: There is no association between trigonitis, a visual description given by a urologist during cystoscopy and IC which is a clinical syndrome consisting of pain and frequency. For discussion on trigonitis refer to questions 125 & 134.

Q143: I have severe IC. I have had 3 dilation surgeries. I also have many other health problems including fibromyalgia. My doctor has found that my bladder is shrinking at a fast pase. He doesn't know why and we have tried all the treatments available. Nothing has worked, My urethra is shrinking as well. It has been 2 years. Have you ever seen the fast shrinking before or have any idea's beside transplant.

A: IC is unpredictable and is apparently severe in your case. As far as bladder capacity is concerned you may want to try bladder re-training (check the IC Network Handbook). If all else fails and pain is unrelenting, requiring increasing doses of narcotics then surgery may be an option. It has been reported in the literature that less than 10% of IC patients need surgery and my guess is that less than 1% is more accurate. At this time suggested surgical procedures include removing the entire bladder and using bowel as a bladder replacement. Small bowel is used as a loop that leads to the skin and an external collection bag is then used. Large bowel can be made into a low-pressure reservoir that leads to the skin with a small nipple that can be catheterized several times a day. Surgery for IC is not always effective and needs to be an option of absolute last resort.

Q144: There seems to be 2 separate schools of thought with dealing with IC pain.

1) The chronic pain (which can cause both depression and nerve damage) is more dangerous to IC patients than the side effects of the opioids.

2) The side effects of the opioids (i.e. damage to kidney, liver and chemical dependence) are more dangerous to IC patients than the chronic pain and the patient should just learn to live with the pain.

I am extremely discouraged at this because there doesn't seem to be a bridge between these thoughts. What are patients, like myself, to do if we don't feel like we need to take the medication 7/24 but cannot stand the pain everyday. I am a patient who needs about one to three lortab5 a day on average. The doctor who is working with me now is starting to get antsy about prescribing the narcotics and might not them for much longer. My urologist believes that I should learn to live with the pain. I have been to 2 separate pain clinics that had me on so much medication (due to tolerance) that I couldn't function. It seems to be either I stay in bed due to the pain from the IC or stay in the bed due to the effects the pain medications (oxycontin, percocet, neurontin). It's frustrating to try to figure this out by myself. Can you help?

A: A difficult situation and I don't have a medical record to review. You complain about pain but I have no idea about your evaluation and other treatments you have tried. Have you tried multiple hydro distensions? How about DMSO? Here are some thoughts anyway.
1) Any other co-existing problems ?: endometriosis, pelvic floor dysfunction etc.?
2) Use of alternative approaches such as acupuncture , myofascial release , TENS,
3) Review the ICN Handbook and review all prior treatments and evaluations because if and only if your only option is narcotic dependence, then surgery may be an option.

Q145: In your opinion, do you feel that it is safe for a polycystic kidney patient to receive DMSO treatments for IC? I have heard that it is necessary to have your kidney and liver function tests done 6 months following DMSO treatments. What are your thoughts on this recommendation?

A: These recommendations are from the manufacturer. Be sure to discuss use of DMSO with your nephrologist.

Q146: Is it possible to have interstitial cystitis, without having pinpoint bleeding in the bladder lining? It seems I have all the classic symptoms except for this. My Urologist is treating me with DMSO treatments, and they are helping somewhat, but he has never stated that I do have interstitial cystitis.

A: Refer to question 141