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Urology  (Expert Forum)
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intersticial cystitis
Questions in the Urology forum are answered by Dr. Stephen Liroff, affiliated with the Henry Ford Hospital. Topics covered include benign prostate disease, penis curvature, cystisis, kidney stones, pediatric urology, prostate, sexual dysfunction, urinary tract infections (UTI), and urological cancers.

intersticial cystitis

by delores__0, Jan 07, 1999 12:00AM
  3 months ago my 65 year old aunt was diagnosed with IC, exrays showed no problems. The ureathea was streched but this did not help. Not bacteria was found in any cultures. They have tried urised, floxen,. They perforned the pressure test where water was inserted into the bladder and everything was negative.  She then had 7 treatments where DNSO and some other drug was inteseted by cathera into the bladder and held for one hour.  This was painful  with a lot of pressure and no improvement.  She is no on Elmiron for the past two weeks and has only seen a very minor improvement.  Are there any specialists that you can recommend in the Atlanta,GA area?  What are the next steps ?  She is very depressed and cannot not leave the house very often because she feels that she has to void all the time.  We would appreciate any hellp. Thanks
======================================================
Dear Delores,
I sympathize with your condition and plan to provide you with information such that you can understand that you are not alone.  You have a condition known as interstitial cystitis(IC).  This is a chronic inflammation of the bladder wall and unfortunately there is not a known cause or cure.  It differs from common cystitis in that the later is caused by a bacterial infection which can be treated by bacterial antibiotic therapy, which you state you don’t have..  Your urologist was correct by performing a cystoscopy to rule out cancer or anatomic abnormalities which could also be a cause for your irritative symptoms.  Urodynamics was done to make sure your bladder functions properly and that it is not unstable.  It is also important to note that IC is not a psychosomatic disorder nor is it caused by stress but as you state, it can be quite depressing.
IC can affect people of any age,race or sex.  It is, however, most commonly found in women.  A 1987 epidemiological study estimated that 450,000 people may be affected by the disease.  The symptoms include:
-Frequency-Day and/or night urination(up to 60 times a day in severe cases.)  In early or very mild cases,frequency is sometimes the only symptom.
-Urgency-The sensation of having to urinate immediately may also be accompanied by pain,pressure or spasms.
-Pain-Can be in the abdominal,urethral,or vaginal area.  Pain is also frequently associated with sexual intercourse.
-Other Disorders-Sometimes patients also report experiencing symptoms such as muscle and joint pain,migraines,allergic reactions,colon and stomach problems as well as the more common symptoms of IC described above.
Diagnosis is very difficult and must follow several steps:
1)Urine cultures must be negative
2)Rule out other associated disease
3)cystoscopy-routine cystoscopy in the clinic may not be sufficient to make a diagnosis of IC. It is usually necessary to distend the bladder under general anesthesia, which it sounds like was done, in or to see pinpoint hemorrhages on the bladder wall a hallmark of this disease.  It may even be necessary for a biopsy to be take at that time as well.
Treatments
1)Bladder distention
2)Oral medication-anti-inflammatory drugs,antispasmotics,antihistamines and muscle relaxants.
3)DMSO(Dimethlyl Sulfoxide)-bladder instillation
4)Elmiron-(Sodium Pentosanpolysulfate)
5)Anti-depressants
6)Diet
7)Tens Unit
8)Silver Nitrate
9)Clorpactin WCS-90
10)Self Help- biofeedback
11)Surgery
Recommendations:
I agree with your first urologist’s work-up thus far.  I know your frustrated, but a cure is not available at this time.  Most Urologist advise avoiding alcohol, spicy foods, chocolate, caffeine, citrus fruits and juices, tomatoes and carbonated drinks just to name a few.
In Atlanta, I would call the Urology department at Emery University or Grady hospital.  They could refer you to a Urologist that specializes in IC.
I will also enclose an address of the IC association. You may want to contact them for more information.  ICA, P.O. Box 1553, Madison Square Station, New York, NY 10159  (212) 979-6057.
Note that Elmiron takes months before relief is expected.
This information is provided for general medical education purposes only.  Please consult your physician for further diagnostic treatments and options pertaining to your specific medical condition.  More individualized care is available at the Henry Ford Hospital and its satellites (1-800-653-6568).
Sincerely
HFHS M.D.-AK
*keyword:Interstitial Cystitis





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