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Dr. Jay Burstein Dr. Jay D. Burstein
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Our Disclaimer
Created: August 2000
JO & JB
Q & A with Dr. Jay : July - August 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:
84. Are
there any other terms for Hunner's ulcers?
85. Does Elmiron cause mastitis in the breast?
86. Is small bladder capacity normal?
87. I have recently noticed a damp panty problem. Can you
suggest anything?
88. IC in teenagers.
89. Why can I go long periods feeling
well and then have a flare again?
90. Would the Innova Incontinence system be helpful for
IC?
91. Is
there any problem with having a DMSO cocktail while on Elmiron?
92. Urinary markers for IC?
93. How long should DMSO be held?
94. Do you have to have the frequency to have IC?
95. Do most IC sufferers have a history
of bladder and/or kidney infections?
96. Female circumcision
97. Could a ureaplasma infection
have anything to do with my IC?
98. Can localized pain be a symptom of IC?
99. Is cysto-fulguration as a treatment
for urethral syndrome?
100. Can
I possibly have been misdiagnosed and really only have Chronic Cystitis?
84. Are there any other terms used for Hunner's ulcers? My doctor said the floor of the bladder was covered with postules or some similar term.
A: Hunner’s ulcer was first described in 1915 and was initially thought to be required for the diagnosis if IC. Today we find only 15% of IC patients have Hunner’s ulcers and there is a question as to whether or not those patients have a more severe or significant symptoms or progressive disease. Hunner’s ulcer appears as a plaque, a large crack or a fissure on the surface of the bladder that is identified after hydrodistention is done. The current thinking is that these ulcers do not predict treatment outcome or severity of the disease. The “pustules” you refer to may be what’s called cystitis cystica (benign bladder floor cysts) or psuedomembranous trigonitis (changes associated with estrogen effect on the lining of the bladder floor). In either case these are very common findings and are not associated with IC.
85. Does Elmiron cause mastitis in the breast?
A: Not to my knowledge and experience. Mastitis is not listed in the 2000 edition of the PDR as an adverse effect from the use of Elmiron.
86. Since I was a little girl, (I am 36 now), I have always urinated frequently, well, more frequently than most people. My mother took me to a doctor when I was little, and he said there wasn't anything wrong with me. I don't really feel there is something wrong, I have sort-of diagnosed myself with a small bladder. If I drink anything, very soon I will start making trips to the bathroom frequently. If I'm going on a road trip, I have to make sure I don't drink anything or even drink the milk in my cereal, so I won't have to stop and find a bathroom. Is this normal?
A: I have found some patients to have very small bladder capacities due literally to a “small” bladder. Apparently you have accommodated to this quite well and it is not affecting your lifestyle. So I would say that this is “normal” for you. If this does become a concern to you, then a bladder-retraining program would be an option.
87. I am 38 and have been diagnosed with IC for about 5 years, controlled well by Elavil 75mg at night. I have noticed a damp panty problem in the past year or so, and I tried Ditropan which caused me to wet my pants. Can you suggest anything? It appears to be a general overflow leakage of small amounts each day. Note, my job is labor intensive, much lifting, etc. Any suggestions are greatly appreciated!
A: You may have overflow incontinence, stress incontinence or over-active bladder. Regardless, urine leakage or incontinence needs to be evaluated by a urologist.
88. My 17 yr.old daughter was just diagnosed with IC & having never heard of it, I find the information available frightening, & mostly about women my own age. She leaves for college this Aug. & I am so worried about how she will handle dorm life & the pain. At this point she is afraid to investigate this disease so I am trying to find any positives for her. Please advise me as to how to deal with this in such a young girl. Thank you- Mrs. Mom
A: The positive aspect of IC is that it is treatable and the sooner a patient is educated and understands the natural history of the disease and the sooner a patient becomes active in the treatment of the disease, the better long term outcomes in symptomatic relief are obtained. The really “frightening” aspect of IC is that ignorance in the lay community and the medical community can result in significant delay in diagnosis and treatment resulting in progression of the disease and unnecessary suffering. I have found once treatment begins we can achieve significant symptomatic improvement and rarely see progression once therapy is started.
89: I have had IC for nearly eleven years with plenty of ups and downs. I have been able to go several months with minor symptoms and able to function well, then all of a sudden the IC comes back with the burning, frequent urination, cramping. I'm puzzled. Why can I go long periods feeling well and the it's back again? Am I doing something wrong or does this disease have a mind of it's own, waning and waxing on its own?
A: Unfortunately IC does have a mind of it’s own. What you are experiencing is the well known characteristic of IC called “flare”, and it is an extremely common aspect of the disease. It is very important for you to accept this as part of the natural history of IC and to control it you need to create a personalized “tool kit” as suggested in the IC Patient Handbook.
90. I have started to use a T.E.N.S. unit when I have IC pain and it does help. I have also heard of the Innova Incontinence Treatment system from Empi which is used for people with incontinence. It is supposed to strengthen the pelvic muscles. Would it be beneficial for someone with IC?
A: Pelvic floor exercises that strengthen the pelvic support muscles have been used effectively in some patients with urinary STRESS INCONTINENCE. For those who have pelvic floor dysfunction that results in pain because of muscle spasm, pelvic floor exercises should focus on the relaxation phase of muscle contraction. This would be most effective with the help of a trained physical therapist.
91. I have been on Elmiron since Jan. 5, 2000 but still experience a lot of pain when urinating. I had another DMSO cocktail about 4 weeks ago. Is there any problem with having a DMSO cocktail while on Elmiron?
A: Combination therapy is very effective in treating symptoms of IC. A typical approach may involve repairing the bladder lining defect with Elmiron, treating the increase in nerve stimulation with amitriptyline or other agents and third, treating any allergic component with atarax or vistaril.. Some patients respond very nicely to bladder instillations of DMSO and usually need weekly to monthly treatments on a long- term basis. We have found that once DMSO is discontinued, resistance to its effects may occur.
92. I have been reading so many articles about different tests for markers that are almost ready for "market". How can we find out about these studies to see if we can have our urine tested prior to hydrodistention. Some of us just cannot have surgery and this would at least give our physicians a good idea if we had IC or not.
A: There is no known marker for IC at this time. Anti-proliferative factor is a urinary protein that appears to be elevated in patients with IC but not in controls. It has promise as a marker and study results have been shown to be reproducible. Other investigational reports have shown potential for various markers but none at this time are commercially available.
Hydrodistention not only reveals the glomerulations that are the hallmark of this disease and can be used to confirm the diagnosis, but more significantly, many patients obtain symptomatic relief from the procedure. It is not a surgical procedure, but a diagnostic and therapeutic evaluation that requires an appropriate anesthetic. I have never had a patient that could not undergo this procedure because of anesthesia risk.
93. My IC was diagnosed by a cystoscopy and I am on Elmiron, following diet recommendations, and have received 2 of possibly 6 DMSO bladder instillations. Each time I get the instillation, I am told to hold it for 5 min. which is the absolute maximum time that I can, and there is MUCH pain. I have read somewhere on this website that it is supposed to be held 25 to 30 min. Can you clarify this? My doctor fortunately for me, is listed as one of the physicians knowledgeable in this field and use of DMSO.
A: You are under good care: DMSO is very rapidly absorbed through the bladder lining and 5 minutes retention time is certainly appropriate.
94. I have had severe bladder problems off and on since my first C-section in 1983. (I've had 2 c-sections since, in 1985 and 1986 as well). Before that I had many UTI's that seemed to respond to antibiotics. When I awoke after the first C-section, I was screaming in bladder/urethral agony. 90% of the time a UA would show no bacteria, but a little blood. It was a nightmare trying to convince them of my symptoms with no bacteria present. Since then I have gone through many urologists, have had 3 cystoscopies under full bladder distention and anesthesia....urethral dilation, DMSO treatments, silver nitrate and on and on. I will be fine for awhile, then it comes back for a month, then goes away for awhile, etc. It is ALWAYS present around my period. The Drs. I've seen have never given a definite diagnosis of IC. I think mainly because I don't have the frequency. I do "feel" like I have to go, but then it's only a few drops, and it burns and hurts BADLY!! In your opinion, do you have to have the frequency to have IC? They did see what they called "scarring" and "inflammation" during the cystos. Thank you.
A: Your symptoms are certainly consistent with IC. This is a “spectrum” disorder which means that any individuals’ specific symptoms will vary from mild to severe in quality, intensity and severity. IC is considered a pain-frequency syndrome. Some patients exhibit more frequency than pain, some experience a more significant degree of pain. In any case, each patient should be treated in an individual, systematic way that is based on mutual understanding between the physician and patient of the natural history of the disease and all available treatment options. In your case it is more important for you to receive appropriate treatment than to give a label to your symptoms.
95. Do most IC sufferers have a history of bladder and/or kidney infections? Also, my urologist says if I had IC I would likely have blood or something showing up in my urine. Do you agree? had a cystoscopy (was not under anesthesia) in 1996 with a diagnoses of chronic cystitis and urethritis, however I have never had a bladder or kidney infection. I am almost certain I have IC from my history of symptoms (frequency, urgency and more recently pelvic pain and mild burning.) My urologist suggests having another cystoscopy would not likely show any more than the first one I had and thinks I may be having "severe bladder spasms" and has prescribed Ditropan XL. I don't want to just mask the symptoms, I want to stop this process in it's tracks!! Where would you suggest I go from here?
A: With the history of your symptoms, IC must be seriously considered. Persistent symptoms such as yours may have a variety of causes and cystoscopy under anesthesia would certainly be an option. It appears that you could benefit from another opinion. The first step in treating any disease or symptom complex is to establish a firm diagnosis. It is apparent that this has not yet been accomplished.
96. This is a sensitive question about female anatomy. I remember reading somewhere about female circumcision. Some of the excess skin on the labia lips is removed to promote cleanliness and also to increase sexual pleasure. I have a lot of this "excess skin" and wonder if it could be contributing to my chronic bladder infections. (I have IC as well)
A: Unlike male circumcision, there is no known medical benefit for a woman to undergo this procedure. Female circumcision as practiced in some cultures results in brutal excision and mutilation of the skin around the clitoris and sometimes the clitoris itself. Even if this could be performed with antiseptic conditions under anesthesia, it would result in damage to the sensory mechanism and render the person unable to achieve orgasm. I am not aware of excess labial skin causing any problems. To my knowledge it does not promote infection or decrease sexual pleasure.
97. I have been diagnosed with I.C. per cystoscopy/hydro. During the procedure, my urolologist noted that I had bleeding predominantly at the bladder neck. Could a ureaplasma infection have anything to do with my IC? I ask this because I tested positive for a ureaplasma urealyctium (sp) infection in my urethra a while back. I have yet to be retested and am wondering whether I should bother or not. I should mention that I took Doxycycline for the ureaplasma. Thanks in advance.
A: While we do not know specifically of any distinct, reproducible cause of IC, there is anecdotal evidence that trauma to the bladder may initiate the symptoms associated with IC. There is no documentation that ureaplasma causes IC, but the inflammation from the infection may be contributing factor. It is possible that you have a recurrent infection and may want to ask your M.D. for a repeat culture.
98. I have been recently diagnosed with IC but still have a question concerning symptoms. I experience a very localized pain in my left lower abdomen. It almost feels as though it is in my ovary area. Does this sound at all like a symptom or experience of someone with IC?
A: The symptoms of IC are varied and non-specific. That is why it is very important to rule out any other causes. IC is considered a “diagnosis of exclusion” requiring all other diseases that may cause symptoms to be specifically considered and ruled out before making a diagnosis of I. If the pain in your left lower abdomen persists, you should get an opinion as to its cause. It may certainly be ovarian in nature and should definitely be evaluated by a physician.
99. Would you recommend cysto-fulguration as a treatment for urethral syndrome? I had a cystoscopic exam in the urologist's office.
A: Urethral syndrome is very difficult to define and has been a “waste-basket” diagnosis used by urologists for years. Symptoms usually used to describe urethral syndrome are similar to those of IC-frequency and pain of varying degrees. Could urethral syndrome be a “mild” form of IC? This has been proposed in the past. Regardless of giving a symptom complex a name, you have apparently significant symptoms and it is likely that IC should be considered. The best way to make the diagnosis is by a careful history and physical exam to rule out any other causes, AND a cystoscopy under anesthesia so a hydrodistension can be performed. It is pretty well accepted that IC is diagnosed when tiny pinpoint bleeding spots (glomerulations) are seen . Be sure that your doctor is familiar with IC before starting any treatments.
100. When I was seeing my urologist in N.J. he had me diagnosed with chronic cystitis and I would take a maintenance dosage of Macrodantin. This worked wonderfully. Then I moved to DE and started seeing a urologist here. He diagnosed me with IC and I am taking Elmiron, Detrol, and Atarax. I have felt worse in the past year since on this then I ever have before. Can I possibly have been misdiagnosed and really only have Chronic Cystitis? I had a cysto and hydro done by my current uro. That is how he diagnosed me.
A: The purpose of making any diagnosis is to make a patient “better”. You may have IC as a correct diagnosis, but it appears that you are not “better” at this time. I cannot give a proper evaluation with the limited information I have but two things come to mind in this situation. 1) You’re IC is getting more symptomatic or, more realistically, 2) you may be having side effects to medications. Be sure to review your current list of medications and their side effects with your doctor.