Interstitial cystitis

JHarper33(AT)aol.com
Tue, 23 Jun 1998 17:20:52 EDT

I'm (still) unpacking boxes from our move and today found some old magazines
that, oddly enough, a friend brought to me when I was first in the hospital
with TM. Flipping through one, I came across an article on interstitial
cystitis, a chronic bladder inflammation. It's often mistaken for a UTI; its
symptoms are frequent, urgent need to urinate and pelvic pain and pressure. As
of the date of this article (Aug. '95) they didn't know what caused it, but
theories were an unknown organism (bacteria doesn't show up in the urine but
bacterial DNA fragments are found in bladder tissue); leaks in the inner
bladder lining that allow "toxins and irritants in urine to seep through the
lining and injure the underlying bladder wall" or set off allergic reactions
(allergy-indicating "mast cells" are found in urine of IC patients) ;
something irritating nerve endings which then secrete "substances that provoke
pain and more inflammation"; or, an auto-immune disease. Some female hormones
also come into play, but 10% of the sufferers are male.

After ruling out other potential causes, diagnosis is made by looking inside
the bladder for inflammation or pinpoint bleeding. Unfortunately, you have to
have this test done while under general anesthesia, unless they've modified it
since this article.

Possible treatments, as of this writing, included Elavil to relieve pain; a
bladder "wash" with an anti-inflammatory called dimethyl sulfoxide (DMSO)
weekly or biweekly for 6-8 weeks; sodium pentosanpolysulfate, which they think
creates a coating in the bladder lining; or surgery for more severe cases.
Selp-help measures: bladder training to increase the amount of time between
urination (it's thought that frequent urination shrinks the bladder, which
leads to more frequency and urgency); avoiding certain foods and drinks which
set off or worsen symptoms, such as chocolate :( , alcohol, tomatoes,
oranges, caffeine, artficial sweeteners, and carbonated beverages.

There is an address to send a self-addresses stamped envelope for more info.;
I don't know if it is still current, but here it is: The Interstitial Cystitis
Association, P.O. Box 1553, Madison Square Station, New York, NY 10159.

I found this VERY interesting as urinary frequency and urgency are big
problems for me. I don't have severe pain, but do sometimes have pressure or
kind of a cramping. I've been planning to get to a dr. again anyway to see
about urinary problems as soon as we get new insurance set up; I think I'll
bring this article along, and maybe not mention it right off the bat, but if
other tests or treatments don't show anything or help.

Thought I'd pass the info. along as frequent urination is a frequent topic
here. The whole article is in the Aug. '95 issue of Good Housekeeping,
entitled "The Women's Disease Doctors Misdiagnose." If anyone is interested, I
could try to scan the article and send a copy of it (is it okay to do that
with copyrighted print magazine articles?)

And my husband wonders why I have a hard time throwing things away. See, these
things really do come in handy in later years. ;)

Barbara H.