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Dr. Jay Burstein Dr. Jay D. Burstein
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Created: May 30, 2001
JO & JB
Q & A with Dr. Jay : May 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:
147:
Cystectomy versus aggressive pain management.
148: Do recurring urinary symptoms suggest IC?
149: Do
cystoscopies without hydrodistention look normal for IC patients?
150: Mannose and IC. Is it there any research?
151: Could
strep throat lead to IC?
152: Children
and IC
153:
Urethral Syndrome, IC.
154: Can
Synthroad irritate IC?
155: Does
having IC affect fertility?
156: Is
there a connection between Graves Disease and IC?
157:
Can a new sexual partner cause IC?
158: Children and IC.
159: Diagnosing IC
160: Is
IC and endometriosis related?
147. I have a severe case of IC and I have been told by one urologist that I need to have my bladder removed. I went for a second opinion, and the urologist said that although my surgery report stated that my bladder can hold only 150 cc and I void 30 to 35 times a day, that I should not have my bladder removed, as my pain comes from the base of the bladder and therefore my pain will not go away. I have taken Elmiron (up to 6 tablets per day), but my current urologist took me off of them since it was not helping. I was tested for an interstim implant last May and I could not even get the stimilator up to number 1 without having pain. My urologist is now suggesting that I go to the pain clinic and see if I could have the pain clinic prescribe a patch that has the drug Fentanyl in it. He thinks that along with this patch and still be on all of the medications that I am presently taking, that this would help level my pain. I want to know if you have had any IC patients who have had relief from pain.
A: Hang in there! Surgery to remove your bladder should be treatment of last resort. Try all other options and combinations of treatments, including: bladder coatings, antihistamines - such as hydroxyzine, antidepressants to help with pain management & perhaps even pelvic floor work if needed. Continue your relationship with the pain clinic! Newer approaches to pain management have provided significant relief for many of my patients. One resource that you should take advantage of is "The IC Survival Guide" written by Robert Moldwin, MD. It has an excellent discussion of all treatment options available for IC, as well as a section on pain management. Your doctor may have this. It's also available for sale through the ICN.
148. I am 21 years old and for 5 months now I have had persistent urinary discomfort. I am a frequent user of over the counter medications such as URISTAT and AZO. For example, I will get the painful urge to urinate and will be relieved with the URISTAT and the whole thing is gone and sometimes I can go weeks without seeing it again. At times, I will just get it for a couple days in a row. What is this? Should I see a doctor?
A: Azo And Uristat contain phenazopyridine which acts as a topical analgesic on the lining of the bladder. In technical terms it is an AZO DYE and will color the urine an orange- reddish tint. Long-term use is NOT recommended by the manufacturers and can result in yellowish discoloration of the skin and white part of the eye. (Contact lenses can also become discolored). Listed adverse reactions include headache, rash itching, Gastro-intestinal disturbance and anemia. Care must be taken when using this class of medication because these products only relieve pain, they do not treat the cause of disease. If your symptoms continue to persist, be sure to see a doctor. You may be suffering from recurrent infection.
149.
Would a general cystoscopy, not under anesthesia, look normal to a urologist,
or would there be any indication of IC even then?
A: In order to produce glomerulations, the "tell-tale" sign of IC, the bladder has to be distended past normal capacity. This overdistention causes severe pain and requires the use of general or spinal anesthesia. You are correct. If IC were present the bladder would appear normal during cystoscopy without anesthesia.
150.
I've recently heard that mannose might be helpful in treating IC. Can
you
help me find any research to that effect? Thank you.
A: Mannose is a sugar obtained from various plant sources. It may be useful in some cases of urinary tract infection caused by the bacteria E. Coli because it prevents a subtype of this bacterium from sticking to the bladder wall. To my knowledge, it is not effective in relieving symptoms of IC.
151. Could untreated strep throat lead to IC?
A: There has not been any documentation of streptococcus as a cause of IC.
152. My daughter is only 12 yrs. old. She is on her 7th uti since Nov. - She has been in frequent pain off and on and is a little better being on detrol and macrodantin for uti. She has had bacteria - e-coli, enteroccocus and now staph in her urine culture (at different times). She continues to get this pain and an infection despite being on preventative bactrim or macrodantin. We are very confused. She has had an ultrasound and a cystoscopy done. She has a thickened bladder wall and debris in her bladder. She also leaks all over her bed every night. She has terrible bladder pain and/or vulva pain sometimes. I was wondering if you could offer any idea as to what is going on with her.
A: Your daughter apparently suffers from recurrent urinary tract infections likely made worse from dysfunctional voiding. This is a common problem in some children and needs to be evaluated by a pediatric urologist. Needless to say she may also have associated pathologu such as IC or vulvitis. Be sure to have her seen by a pediatric urology specialist.
153.
For the past year I have had pelvic pain. I was diagnosed with endometriosis
and took lupron with no improvement. I was also evaluated for ic, which
was negative because the doc saw no signs of the pinpoint hemorrhages
or ulcers the pain feels like it is in my urethral area. Should I see
another urologist?
A: Remember that "IC" is a spectrum disease. Pinpoint hemorrhage is a typical finding but does not need to be present for the diagnosis of IC to be made. Your discomfort is concentrated in the urethral area and may considered "urethral syndrome". I view the spectrum of bladder and urethral symptoms as a continuum and would certainly treat you as if you had IC .All the treatment options available should be considered to provide you relief regardless of how your disorder is classified or what label a particular doctor wants to give it.
154.
I have read that synthroid might aggravate and cause pain for IC'ers.
Is this
possible and, if so, what is a safe and effective substitute. I am especially
interested in a non-animal derived medication, if possible.
A: Synthroid is synthetic levothyroxine and is identical to that produced by the human thyroid gland. It is not made from animal (non-human) sources. It does contain "filler" material which may present a concern for IC patients. Although the quantity is very small, any amount may potentially cause difficulty. Listed ingredients include: acacia, cornstarch, talc, confectioners sugar, lactose, magnesium stearate and providone. Several different food colorings (FD&C red, yellow or blue) are also added to identify different tablet strengths. There is no substitute that I know of. (Why do they add all that stuff anyway)?
155. Does having IC affect fertility? I was diagnosed about 6 months ago with IC and my husband and I are trying to conceive.
A: IC does not affect fertility. Keep up the good work!
156. I have Grave's Disease and have recently been diagnosed with IC. My urologist says there might be a connection between the two. What are your findings on the two being related?
A: Hyper (too much)-thyroidism is another name for Graves disease. This is not an associated disease with IC. Commonly related to IC are: fibromyalgia, allergy, vulvodynia, migraine headache, asthma and irritable bowel syndrome.
157. I have seen posts of women
who have gotten IC as a result of a new sex partner. Is it possible that
a new partner can cause IC? Is there any data that backs this thought
up? Just trying to understand what causes IC. Thanks!!
A: To our knowledge at this time, IC is not sexually transmitted.
158.
My daughter is 5 years old and saw a pediatric urologist last week. This
week she had a renal sonogram and a VCUG test and next week I'll be seeing
him to discuss the results of these tests. My daughter has been complaining
for several months with greater or lesser severtiy that it feels like
she needs to go potty but can't go. She urinates and then right after
finishing is in distress that it still feels like she needs to go. Her
consistent complaint to me is "My vagina is bothering me." In
the past week, she has started complaining that her tummy hurts. She's
had diarrhea a few times over the past few months, off and on, nothing
severe that stays with her so I assumed it was nothing related. Most complaints
are at night and I suspect that's because she's distracted during the
day with activities and it takes her mind away from how she feels. She
has had about four or five tests for bladder infection over the past 6
months that have come back negative. What information can you provide
about IC in children? And is this something
we should pursue further to see if my daughter has it?
A: Complaints such as your daughter's are common in the pediatric age group and must be seriously considered. After all anatomic abnormalities are ruled out (this is being done with all the tests you mentioned), other causes need to be considered. Dysfunctional voiding and pelvic floor disorders are two causes usually referred to in the literature. IC is RARE in this age group but non-the less needs to be significantly considered if no other cause can be found. IC in pediatric and adolescent children HAS been well documented in peer review journals and should be sought as a cause of severe urinary frequency and bladder pain.
159. I have been recently diagnosed as having I.C. I did not know I was even having a problem until a yearly pelvic exam turned up a painful bladder upon palpation. I had been having pelvic discomfort, but thought it was due to the ovarian cysts I usually have. I do not have frequency, urgency, only the pain. I under went a Parson's test and it was negative. The other day I had a cystoscopy with hydrodistention. My Dr. was able to instill almost 1000cc of NS before I told him to stop. All the fluid was emptied, then he instilled more NS, to view the bladder lining. The glomerulations did show up at this time. There were also little clusters of the tiny hemorrhages. I am having a hard time accepting this, taking all the medicine (Elmiron & Hydroxyzine) along with the diet changes, since I wasn't even aware of any problems. I am assuming I can have this diagnosis, but want to be sure I can without having any other symptoms other than pelvic pain. Any words of wisdom? Thank you.
A: IC is considered a "pain-frequency syndrome" and its symptoms present on a "spectrum" of severity. Some patients have more frequency than pain while others, such as you, experience mostly pain. One reason IC is so difficult to diagnose is because the way it presents: There are no typical, consistent findings and symptoms are variable. It appears you have an appropriate diagnosis and are approaching treatment in a proper fashion.
160. Can having both interstitial cystitis and endometriosis be linked in any way or are they two independent conditions.
A: These are not related conditions and occur independently of each other. Have IC patients had endometriosis? Yes, some have but many have not. It may be that endometrial tissue (which is often painful) has adhered near the bladder and could be causing painful symptoms. If a physician suspects endometriosis, a routine laparoscopy can be performed to examine the pelvic organs and remove offending tissue.