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: March 2000
JO & JB
Revised: Nov 22., 2000
Jill O.

Q & A with Dr. Jay : May-June 2000

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:

60: Do all IC'ers have Pelvic Floor Dysfunction?
61. Can anti-inflammatories help treat IC, such as those used for arthritis?
62. How to increase voiding time?
63. What is the link between UTI's and IC?
64: Do men with IC usually have a discharge with urination?
65: Would waking up 2-3 times a night effect my memory?
66. What research is being done involving hormones and IC?
67: Is sugar a trigger for IC flares?
68: Can a 14 year old have IC?
69: Is hematuria a normal symptom of interstitial cystitis?
70. Can biofeedback help with urinary retention?
71. Can IC be connected to anoxia as a result of surgery?
72. Radiating Pain in IC and how to treat it?
73. Elmiron and wrist lubrication?
74. What is the difference in hemorrhagic cystitis & I.C.?
75. I was prescribed Elmiron but am reluctant to take it because I have been unable to find a satisfactory blood pressure medication. Do you have any suggestions?
76. Stringy White Matter or Tissue in Urine. Is it normal?
77. Is acidophilous helpful for IC patients?
78. Do individuals with IC have a higher than average incidence of autoimmune diseases, and if so, which ones?
79. Is there a specific drug treatment protocol for IC?
80. I have all the symptoms of IC, except I can sleep through the night without urinating. Because of this, my doctor does not think I have IC. Have you heard of this???
81. Antidepressants & irregular heart beats
82. Can the long term use of diet pills cause IC?
83. Are there symptoms of bloating with IC?

60. I was wondering....what comes first. Pelvic floor dysfunction or IC? I realize now, looking back, that I had symptoms 5 years prior to onset of IC in 8/98. Symptoms of each seem to overlap in some areas. Do all IC'ers have PFD? Is there any research being done on this? Thanks!

A: This is a "chicken before the egg " question. Pelvic floor disorders will rarely if ever lead to IC though some research is now suggesting that underlying muscle issues can contribute to bladder epithelial breakdown. IC, on the other hand, can cause spasm of the pelvic floor muscles. What is important clinically is that the pelvic floor must be evaluated independently of the bladder as these two problems will often coexist. There is on-going research in this area. At the recent American Urological Association meeting several articles regarding trigger points and myofascial release were presented.

61. In many illnesses, inflammation plays a vital role; arthritis, cystitis, irritable bowel, Crohns disease, etc. Many drugs have been invented to target these inflammation points in the body - my question: If all these ailments target inflammation and the body turning on itself to damage and inflame tissue, why can't some of the drugs for arthritis and the new TZD drugs that inhibit immune response that triggers intestinal inflammation help with interstitial cystitis? TZD (Thiazolidinediones) - Prevention Magazine, Feb. 2000

A: It appears that you are referring to "auto-immune" diseases. These are illnesses in which an individuals immune system actually attacks normal tissues. Anti-inflammatory drugs currently available are really "non-specific" and reduce inflammation all over the body. They are not specific for any disease. IC has not proved to be an immune disorder, however many mild cases can be managed with anti-inflammatory agents such as Celebrex or Motrin.

62. Are there any simple measures to take that can help with longer periods between voiding. At night, especially. Doesn't seem to be related to the fluid intake---still voiding every 1-2hrs leading to exhaustion.

A: Nothing is "simple" with IC. The most conservative way to increase bladder capacity is to do "bladder retraining" : a method of holding back the urge to void until a larger capacity is obtained. This is also called "bladder holding protocol." Essentially, the slowly increases the time between voids to gently increase bladder capacity. This is not done for patients who experience intense pain, however.

Reducing fluid intake concentrates urine which becomes more irritating to the bladder lining and can actually lead to more symptoms. Perhaps the easiest way to get improvement is to have your doctor prescribe medication such as oxybutinin or other anti-spasmodic.

63. What is the link between UTI's and IC? I am still getting UTI's after being diagnosed with IC. Are the antibiotics being perscribed making the IC worse?

A: UTI (urinary tract infection) is an active infection of the bladder usually caused by bacteria. IC is a symptom complex of urinary frequency and pain of unknown etiology (we do not know what causes it.) A patient with IC can certainly develop an acute urinary tract infection and the infection should respond to antibiotics. Many people can have recurrent urinary tract infections which can respond to several medical protocols, but again these occur independently of IC. There is ongoing debate that bacterial infection actually causes IC but to date this theory remains highly speculative .

64. I am a 27 year old male and have been diagnosed with IC for 5 years. Only in the last three months have I began to have large amounts of discharge while urinating. Is this a normal phase in the course of IC?

A: IC is not normally associated with discharge. I assume you are referring to the prostate secretions and if this is so, you need to see your physician for evaluation.

65. I have had I.C. for approx 5 years now. In the past year it seems it is getting worse. I am up 2-3 times every night going to the washroom. Would waking up 2-3 times in the night affect my memory? and would it make me tired?

A: Sleep deprivation can certainly affect performance and memory. It sounds like you're experiencing an IC flare (period of increased symptoms). Talk with your urologist about your sleep difficulties and explore some treatment options. An anticholinergic medication such as oxybutinin might help reduce your bladder symptoms. Elavil (an antidepressant) and Vistaril (hydroxyzine) may also help you sleep through the night. Also, some patients forget and slip back into negative foods like coffee or sodas which can cause symptoms to worsen at night. Don't forget to follow the IC diet and avoid your triggers. It's also worth checking with your primary care physician about whether you are suffering from a sleep disorder, such as sleep apnea.

66. Since most women with IC have a relief of symptoms around menstruation, what reseach has been done to examine this connection and perhaps to utilize hormones in treating symptoms????

A: Many women experience an exacerbation of symptoms during ovulation and just prior to menses. Yet, there has been little research about specific hormonal changes and their effects on IC. One doctor who discusses this is Dr. Elizabeth Vliet in her book "Screaming to be heard: Hormonal Connections That Women Suspect and Doctors Ignore." She has a strong chapter about IC and bladder diseases in her book. In post menopausal women, she believes that some types of hormone replacement therapy that have excessive fillers and colorings (such as Premarin) can be irritating and cause additional symptoms. She recommends a pure form of estrogen to avoid those irritants. I'm not aware of any research supporting the use of hormones as a specific treatment for IC.

67. How common is sugar, of any kind, as a trigger for IC complications? I find if I have any sugar, even fruit sugar, that I have a flare up. Could that be from a sugar sensitivity/allergy?

A: Sugar substitutes are notorious for causing IC flair. I am not familiar with any problem from sugar in natural form. Common table sugar is an extract from sugar cane and contains two sugars joined together: glucose and fructose. Fruit sugar typically occurs singly and is composed mainly of glucose. It may be that the acid content of fruit is causing your problem. Also check with a health food source for "non-processed", raw sugar. The refining process of most available commercial products may also cause a problem.

68. I'm 14 years old. Is it possible for me to have IC? I have been to many doctors and they all say it is in my head but I know its not.

A: IC can occur literally at any age and should not be overlooked in younger, pediatric patients. I agree: "It is not in your head!!" See a doctor that specializes in IC.

69. Is hematuria a normal symptom of interstitial cystitis? Since I was diagnosed over a year and a half ago my urine tests always show urine (the last 5 times). The doctor doesn't not seem concerned but for the last 4 months my blood pressure has been high and I am starting to get concerned.

A: Visible hematuria (blood in the urine) is not a normal symptom of IC though physicians may occasionally see microscopic blood in urine samples. Hematuria can be associated with infection and/or hunner's ulcers. It could be the that small glomerulations found in IC patients may release microscopic amounts of blood as well. If you ever see visible blood in your urine, contact your doctor immediately. That should ALWAYS be checked by a medical professional. Significant microscopic hematuria (more than 5 cells per high power field) needs to be evaluated. It is not a specific finding but urinary tract cancer can present with microscopic OR gross blood in the urine.

70. My doctor has recommended biofeedback for my total urinary retention. I can understand where biofeedback could work for patients with pain and with frequency/urgency but is there any proven fact that it can help with retention?

A: Yes there is. Some people tighten up the voluntary bladder control muscles during urination instead of relaxing them. Biofeedback can be used to "re-educate" proper bladder neck relaxation to promote better bladder emptying.

71. After a vaginal/lap hysterectomy involving a lot of adhesions and venous congestion, my IC bladder overfilled to 2100 cc or so due to the foley catheter not working. It filled to 750 and 850 again that day-one day after surgery. Though I still have pain and burning and MUST stay on the IC diet to stand it, I can't feel my urge to void at all sometimes, especially when my urine is alkaline. I had this before surgery also, but less so. What follow up should I do to make sure the bladder is functioning normally, that things weren't damaged? And could my IC be due to anoxia from poor circulation from the pelvic congestion that the surgeon found? (I'd had endo and to previous surgeries.) I think adhesions are reforming. If this procedure of cutting adhesions around my colon and bladder must be done again, how can I protect my bladder during and after the surgery? Or is 2100 not a serious overfill?

A: Timed voiding may be an option here: void every two hours while awake whether or not the urge is present. Venous pelvic congestion syndrome is a well-known problem for some patients that cause pelvic pain due to distention and varicosities of the major pelvic veins. It may clinically mimic the symptoms of IC, but to our knowledge does not contribute to or cause IC. 2100cc is a large bladder capacity, but in my experience it is difficult to rupture or damage a bladder because of a blocked catheter and remember that over-distention (by hydro-distention) actually relieves many people of their IC symptoms.

72. I have severe IC petechial spots on hydrodistention but a large bladder capacity. I often don't feel the urge to void until my bladder is 300-400-700 cc. If my urine is acidic and/OR the volume is high, I often get radiating pain down my hands and less often down my legs. When the radiating pain resolves (often soon after voiding) pain often remains in my joints of my wrist, hands, ankles, and between the bones in my forearms and calves. Sometimes it also radiates elswhere and affects other joints. Why is this?? How full should one allow a bladder to get? At night, how can one be sure not to overfill under these conditions. How can one work with this bladder and what kind of help do I need to improve or prevent worsening this? I can empty on my own often but what is a safe residual? (A small acidic volume can radiate intensely, also.)

A: Lots of questions here but let me make a significant observation. The problem with IC is not having too large a bladder capacity, but actually limiting the functional capacity of the bladder by too frequent voiding due to the symptoms of severe frequency, urgency and pain. One of the approaches in treating IC is bladder retraining during which the bladder capacity is slowly increased. This will, over time, decrease the relative frequency of voids and in most cases decrease pain. Having the urge to void at 300 or 400cc is a very normal and I would not be concerned at these volumes.

Radiating pain is not unusual for IC patients but it's not associated directly with joints. It may be that you are developing some arthritis or fibromyalgia. Schedule an appointment with your physician and/or a rheumatologist to discuss your concerns about your joint pain.

73. I have been taking Elmiron since it has been approved by the FDA. Recently I have developed pain with movement in my wrists. I had one Doctor tell me it is old age (I am 42 years old) and another Doctor said it is due to the loss of lubrication in the wrist joint after he looked Elmiron up in one of his journals. Is there evidence of this to your knowledge? The Doctor is terminally ill and not practicing any longer or I would question him further. At one point of time my Urologist had me taking 7 a day. I am currently taking 4.

A. I have reread the package insert of Elmiron and find no report of joint pain as a side effect. See my answer above. With your clinical picture, the advice of a rheumatologist could be considered.

74. What is the difference in hemorrhagic cystitis & I.C.?

A: Hemorrhagic cystits is TYPICALLY associated with severe ACUTE urinary tract infection. However there are numerous causes one of which is cyclophosphamide which is a chemotherapeutic agent used to treat some forms of cancer. Also advanced cancer of the kidney or bladder can cause gross blood in the urine which may be mistaken for hemorrhagic cystitis but actually is caused by bleeding from decaying tumor cells.

75. I have just been told I have IC. I was prescribed Elmiron but am reluctant to take it because I have been unable to find a satisfactory blood pressure medication. Do you have any suggestions? I sometimes wonder if the Inderol I am taking is making my frequent urination worst.

A: I do not know of inderol (a "beta blocker" used to control high blood pressure) causing urinary frequency. It is not a diuretic. Discuss your concerns about taking medication with your physician. You may be needlessly avoiding what could be an effective treatment for you. On the otherhand, if you've had problems with medications before, it may make sense to start slowly.

76. Many of us here at ICN have recently dicsussed the presence of flakes of skin, debris, white stringy matter in our urine, In most cases we have been dismaissed and told it is from the vaginal area. Sorry, but I KNOW where it is coming from. Discussion ranges from sloughing off of the bladder lining, possible yeast in the bladder lining, etc...we would REALLY like your opinion...Thanks

A: Small amounts of the bladder lining will be sloughed into the urine, just as we loose small amounts of skin to flaking. The stringy white matter you refer to may likely be mucous, a normal secretion. These are normal occurrences. In severe yeast infections large clumps of yeast forms may be seen in urine.

77. I was diagnosed with IC last year and have been put on Urised and Pyridium at different intervals. I was told taking a dietary supplement of Acidophilus might help in keeping the good bacteria in the bladder helping out in the long run with the bladder symptoms. Is this beneficial? At the health food store, they recommended Pro-Biotic Acidophilus, 1000 mg. each, twice a day. The cost is $14.99 for a 60-day supply.

A: In the absence of infection there is normally NO bacteria in the bladder. Acidophilus might help maintain normal gut flora bacteria as well as prevent opportunistic yeast infections from developing, particularly if you've taken, or are taking, antibiotics. Yeast can be an issue for some IC patients due to the number of antibiotics taken over time.

78. Do individuals with IC have a higher than average incidence of autoimmune diseases, and if so, which ones? What about their blood relatives? Thanks.

A: I'm not aware of any research supporting IC as an autoimmune disease though it is a frequent point of discussion among patients. We just don't know.

79. Is there a specific drug treatment protocol for IC? I would like my doctor to put me on Elmiron, but he thinks the first drug we should try is intravescular DMSO. I prefer not to go that way because of discomfort involved. Background: I am a 43 year old mail; I've had a bladder neck resection, as well as a TURP. For years I was thought to have prostate problems; my physician now thinks the problem is really IC. Anti-Spasmodics don't seem to help.

A: Before the approval of Elmiron as an oral treatment for IC (mid 1990's), physicians usually suggested DMSO as a first treatment strategy. Why? DMSO was the very first medication approved for IC. It is, however, a bladder instillation requiring catheterization. Some physicians now prefer to try oral therapies first, including Elmiron, hydroxyzine or an antidepressent. The choice of treatment should be yours. One thing worth noting. It may take as long as 6 months for you to know if Elmiron is helpful. With DMSO, you may see results after just a few weeks of treatment.

80. I have all the symptoms of IC, except I can sleep through the night without urinating. Because of this, my doctor does not think I have IC. Have you heard of this???(being able to sleep through the night with IC?

A: IC is a "spectrum" disease with symptoms ranging from mild to severe. For research purposes the NIDDK criteria require nighttime voiding for IC diagnosis. From a clinical point of view, the NIDDK criteria are far too restrictive and any patient with symptoms suggestive of IC should be thoroughly evaluated until the disease is ruled out.

81. I was diagnosed with IC in December of 1999. After severe bladder, back, vaginal and abdominal pain I was prescribed Tofranil 25 mg. twice daily, as well as Urised prn and Urispas prn (for spasms)and Hydroxyl 25 mg. At bedtime. This has pretty much kept my symptoms to the point where it is tolerable without having to take narcotic pain meds. My problem is I have mitral valve prolapse with chronic tachycardia. The Tofranil contributes to this greatly but when I cut back on the dosage even by one pill per day I can feel the effects of it with increased pain and burning. I take Tenormin for the tachycardia but taking the Tofranil still shoots my pulse rate up between doses of the beta blocker, usually within two hours of my next scheduled dosage of the Tenormin. I get good results for the IC with Tofranil but it pushes my pulse rate up. Any suggestions? Your help would be greatly appreciated.

A: Anti-depressants are commonly used for symptomatic pain relief. The supposed mechanism of action is a "down-regulation" of sensory pain nerve fibers. If the tri-cyclic group, such as imipramine (Tofranil) is causing side effects, discuss the use of other agents such as Zoloft or Prozac with your doctor. There are a wide variety of other antidepressants that you could try.

82. Can you tell me if long term usage of diet pills (phenteramine) (off and on for periods of time) would have any effect on causing IC? Also, does using them occasionally cause any aggravation of symptoms or regression of healing?

A: I am not familiar with long term side effects of diet suppressing medication.

83. Are there any symptoms of bloating with IC. I have been diagnosed and have constant bloating in my stomach. Could IC be the cause?

IC patients have shared with me that they experience the "ic-belly".. a frequent bloating or swelling of the abdomen to the point that it can look like pregnancy. Why this happens? I don't know.. but it is apparently quite common among IC patients.