My IC Success Story
by Kay Hutchison Benton (c) 2000
Disclaimer: Kay does not proclaim to be a medical authority. Any treatment
options or medications should be discussed and monitored by your physician.
In 1991, after six years of hell, I was finally diagnosed with the bladder
disease Interstitial Cystitis (IC). I endured frequency, urgency, pain, and
fatigue, among other symptoms.
I had been through stressful times as a parent/child sandwiched between two
generations: my aging and dying parents, running two kids to and from different
colleges, and keeping up with our youngest during his busy high school years.
I had also been on a blood pressure medication, long-term that I later learned
could cause UTI's. Stress, incorrect medication and an unknown weakened immune
system brought me to recurrent bladder infections in 1985 with a sledgehammer
hemorrhagic UTI. I became sleep deprived over the next 6 years, as when once
awakened to urinate, I could not go back to sleep. During those sleepless
nights, I read everything I could obtain regarding the bladder, UTIs, kidney
infections, potassium defects, etc. Not too much was known about IC at that time
but there was information to be had and I got hold of whatever sources of
information I could uncover.
From 1985 on as urinary symptoms continued, my doctors would overnight culture
my urine and maybe it would show "bacteria" and maybe it wouldn't. The
urologists didn't know what I had even after four cystoscopies (wasn't I naive
then...); they would not give me a concrete diagnosis even though my operative
reports showed the pinpoint hemorrhages and I had all the IC symptoms. They also
did repeated and painful stretching or dilatation of the urethra to
"help" my urine flow easier. This procedure is known to IC patients as
the "rape" of the urethra. And, they made good money off me. (Note:
everyone who has a cysto or other surgical procedure should get their operative
reports from their doctors for their own record keeping)
They also prescribed every antibiotic in the book for the infections they
"found" until after six years, I could tolerate only one or two
antibiotics, and most other medications as well. I reacted to nearly all of them
as late 1990 came on. The urologists then wanted me to schedule DMSO
instillations but I couldn't quite get myself to let them put an industrial
solvent in my body! If you have bacteria in your bladder wall, it is thought
that these treatments and other instillations only push the bacteria further
back into the bladder wall.
In January of 1991, I learned of our local Northern Virginia (NVA) IC Support
Group and tentatively went to see what they were all about. Most of the regular
attendees were buzzing about their IC getting better because they were taking
long-term antibiotics and special nutritional supplements. That certainly
excited me but without a diagnosis, I knew no one would take me seriously nor
would they prescribe an antibiotic, long-term or otherwise. And, most important,
were there any other antibiotics that I COULD take and not react to? I found out
later there was a special one for me which would eventually help heal my
bladder: Augmentin (Amoxicillin with clavulanic acid, a potassium salt = an
augmentation and thus the name). Never once in six years was I given this
antibiotic because it's mostly for gram-positive organisms, and all my
infections, non-infections, yeast(?) were treated as gram-negative ones and thus
no Augmentin. It was the very antibiotic which was helping heal the bladders of
many in the local IC Support Group and ranks No. 1 in healing the bladders of IC
patients surveyed nationally a few years ago by the Cystitis Research Center and
In the spring of 1991, in desperation, I sought help for diagnostic purposes
from a leading medical center in the Washington, D.C. metropolitan area. The
head urologist flat out told me that I couldn't have both UTI's and IC! At the
time I first saw him, I was without infection but he said come back when I had
one. I knew that would take about two weeks and yes, then I did have E. Coli,
Proteus, or Klebsiella or one of those organisms when I returned, but he didn't
believe an infection and IC could occur simultaneously! He insisted immediately
on an "in-the-office" cysto. Boy, was I dumb! Don't ever agree to have
one of those as they are done without any medication for pain and are barbaric!
As I laid on his table while both he and a colleague peered into my bladder, he
finally popped his head up and said,"Why Mrs. Benton, you DO have IC! And
you have Hunner's ulcers as well!" Now, what was I to say with the tears
streaming down my cheeks: "I told you so!" No, I needed to work with
this man because he no sooner said the above when he then stated I needed to be
hospitalized ASAP to have another cysto under general anesthesia at which time
he would laser the ulcers as well.
Arrangements were made for June 3, 1991. We proceeded with what became a near
fatal cysto he said I had to do for further diagnostic purposes, complete a
biopsy and "make sure there's no cancer, etc." However, in my
pre-surgical blood work, no one but me noticed that my potassium was at 3.1
(N=3.5-5.5) and I didn't know enough to ask them about it being a possible
problem. I was concerned but since no one said anything, I didn't either. The
low potassium level should have been caught by the doctors because a low level
can lead to electrolyte imbalance which in turn affects the heart as well as
other bodily systems especially during surgery. Doctors do so many surgical
procedures in a day that eventually the lab reports may all begin to look alike,
even the blood work done before a routine surgical procedure as they look at the
reports with possible glazed-over eyes, especially early in the morning or later
in the day. I was just "another cysto" to them. Mine was the first
surgery of the day at 7:30 a.m. And...
What happened next? I "unexpectedly" reacted to the anesthesias used.
I was awake when they began with the first one (I had needed no pre-op
sedatives), and called out to them over and over that I couldn't breathe until I
became unconscious and oblivious to everything. I could feel every part of my
chest and upper respiratory track expanding and closing off my breathing and not
getting any air at all. The operative report later stated I had had a "very
difficult intubation" (where they put a tube down your throat and a machine
breathes for you during the surgery). Difficult indeed because I was suffering
from edema of the entire lower and upper respiratory systems! Everything was so
swollen, they couldn't get the tube down my throat; they had to use special
instruments and further medications before they could finally get it down. NOTE
that what they did or didn't do during that surgical procedure affects EVERY
part of my life today!
During this time, I became hypoxic ( due to lack of oxygen) and ended up with
brain damage/injury evidenced immediately by a severe headache after I awoke in
recovery. My BP went up as well later in the day, and they had to increase that
medication, but the doctors never discussed with me what had happened in the OR,
and at that time, just out of recovery, I didn't know even what to ask. Not only
that, but they discharged me the next day when I didn't know enough to say I
needed to stay. I just kept telling them about the bad headache. Oh, and no
doctor after the surgery ever spoke to my husband who was waiting for a report
exactly where he was told to be to learn how it all went. We wondered why THAT
didn't happen. They not only discharged me the next day with no instructions
from a nurse; I wasn't even on a surgical floor; I was in a single room alone in
a hospital I'd never been to before......
The smart-mouthed doctor who assisted with the surgery came by the next day and
RXd Percocet for my headache as nothing had abated the severe head pain, but I'd
be "just fine and to go home." He actually said "Bad things can
happen in a hospital and you want to get out of here ASAP!" (They certainly
didn't want me around for whenever my then near non-existent memory returned.)
My bladder was sore as to be expected, but I knew it would be OK. Percocet,
however, is a codeine derivative; highlighted on my chart was the fact that I am
highly allergic to codeine!
I, however, didn't know that Percocet was codeine, so I took one then at the
doctor's insistence and another a few hours later at home. My husband came to
get me but in hindsight, I never should have left. I couldn't even sit up during
the car ride home because the head pain was so severe, but this thought didn't
"come" to me until about three days later when most of the
anesthesia's were no longer fogging up my thinking. By the time we got home, an
hour's drive, the pain in my head had moved to all of my teeth, and then moved
into severe chest pain, which happens when I am given CODEINE!
Another mistake: we didn't call the hospital from whence we came because I could
only think I was having a tooth or digestive problem. When your brain isn't
working right....A whole lot of Milk of Magnesia finally eased the chest pain. I
was, at least, alive and thankful to be in my own bed and not in the hospital.
My thankfulness diminished as I continued to get worse instead of better; a few
days later I did think to call the anesthesiologist who said nothing really
happened during the procedure (did I expect him to tell the truth?), but maybe,
he said, I had had a little trouble with the first anesthesia, possibly propofel.
I never knew until early 1999 when I finally convinced an allergist to test my
blood for the anesthesia's used in that surgery that I definitely should never
again be given four out of the seven anesthesias they used. And one should never
need seven anesthesias for a simple cystoscopy....
For the next three months, I did my best to stay alive, taking massive doses of
IV vitamin/mineral drips 3-4 times a week. I continued to have severe headaches,
was extremely weak, could not function at all, and had spells that were like
mini-strokes but really weren't, i.e. "micro-strokes."
My nutritionist at that time thought we could beat whatever had happened as well
as the IC by extensive nutritional assistance. By August, nevertheless, I
developed a severe upper respiratory infection and had to be put on a high-dose
antibiotic, but the bladder continued to be a problem. Finally, with the advice
of our then IC support group leader, Ruth Kriz, I turned to Dr. Paul Fugazzotto,
the microbiologist who had developed a broth culture for IC patients that
identified "gram-positive" bacteria such as enterococcus and
staphylococcus in their urine specimens. I sent for his kit, which, by the way,
was $25 then just as it is now! Enterococcus was his finding and he said the
best antibiotic I could take for that would be Augmentin. At last....
I began to feel better within several weeks on the 250mg three times a day
regimen. I couldn't believe it! I actually could go out and do things! Then a
slight backslide, and I figured I needed a higher dose as my weight was above
150lb., the cutoff for taking 500mg three times a day. My weight had climbed
30lbs. the year before when on Elavil; of course no one told me this might
happen when taking an antidepressant to ease IC symptoms. I called the
urologist's office I was now working with, spoke to his nurse and just asked for
a higher dose RX which I readily got. I had gone to him because he had told our
support group of his interest in IC, and I went to him first with my diagnostic
operative report in hand and simply told him I didn't want to do any DMSO or any
other treatment. I was ready to do long-term antibiotics. And so my healing
And unlike all of my previous "treatments" for infections when no one
told me I would have to be careful taking any antibiotics, and especially
long-term antibiotics, I knew through my local IC Support Group that I needed to
take precautions to replace the good bowel flora along with the bad flora
destroyed indiscriminately by antibiotics. This problem is solved by taking
(HPD's Poly-Dophilus) one hour before or after each antibiotic dosage.
Otherwise, the antibiotic and the P-D cancel the good each does. To prevent
yeast common to those who take long-term antibiotics, I took the RX Nystatin
(500,000 IU each) at 6 tabs/day divided among the three doses of Augmentin. This
antibiotic does its best if taken every 8 hours so there is a constant amount of
antibiotic always in the bladder.
Today we have natural (no chemicals) anti-yeast supplements such as ProSeed and
CanPlex by HPD. Much later I learned from a very smart doctor that I could go
ahead and take the 3-4 P-D first thing in the morning on an empty stomach (say
before I would shower, dress and eat and then take the first antibiotic for the
day) and forget taking anymore of the P-D during the day. This helped me
tremendously as I just couldn't remember to take the P-D an hour before or an
hour after the antibiotic, try as I might. I also left the last urologist I've
ever seen (who gave me the original Augmentin RX's) when one time I asked him
about yeast precautions and he just laughed and said there's no reason to be
concerned about yeast! Insist on yeast protection or walk out; though there's no
proof, my feeling is that vulvodynia comes about not just because of difficulty
with certain foods but because antibiotics have been taken repeatedly without
any yeast or acidophilus protection. Yeast can give you the same symptoms as IC
itself! I found another doctor who didn't think that way, thank goodness! And he
wasn't even a urologist but a preventative medicine physician who knew what
opportunistic yeast could do to a person's body. I am eternally grateful to him
and his care.
I now also knew, from the Support Group, to be extremely careful not to
ingest things that were known to irritate the bladder such as caffeine,
chocolate, Nutrisweet, spicy foods, alcohol, aged cheeses, and carbonated
beverages. I drank bottled water only; spring or distilled, it didn't matter
according to my nutritionist. I eventually switched to drinking Brita-filtered
water which was certainly cheaper than buying bottled water and worked just as
well. Today we have a special HPD water bottle which automatically filters water
up to 400 fillings. If you sip most of the day from it, your initial filter will
last you 9-12 months and then an inexpensive refill can be purchased. I still
sip water every day as we all need good hydration.
I avoided any products which contained yeast for over a year. I read every
label; did you know that even crackers have yeast in them? Flat crackers need
yeast? Unbelievable! I bought frozen yeast-free bread from a health food store
if I just felt I HAD to have some bread. Today there is a wonderful protein/no
yeast bread in the refrigerated section of many health food stores called
Ezekiel 4:9. Yes, it's bread that was made during biblical times and thus its
name. I also made my own from-scratch yeast-free muffins which I allowed myself
to eat one each morning. If put in a ziplock bag, they stay fresh, but don't
expect them to taste light and fluffy as the store bought ones do; those have
yeast; that's why they are light and fluffy! I washed my underwear in special
detergent such as used for baby garments; I ate as stated above none of the
basic "no-no" foods but found I had no trouble with any other foods,
including fruits and fruit juices. Remember, we each are unique in our IC! YOU
have to find out for yourself what foods, if any, are a problem for you through
trial and error; there are good diets but again you have to tailor them to meet
YOUR particular needs. You may not have to deprive yourself as much as you've
been led to believe...it's your very own body, not someone else's.
My husband and I abstained from intimate relations for months at a time thinking
that could be part of the problem; I still got infections (before going on the
Augmentin that is) so that wasn't it. Later on as I was being treated with the
Augmentin, it was suggested that we have my husband's semen also broth cultured
by Dr. Fugazzotto just to be sure we weren't passing the bacteria back and forth
and sure enough, my husband's culture came back also positive for enterococcus.
He needed only a short few months of Cipro, however, and he was cleared. Because
he had been asymptomatic, we had no idea we were sharing the same bugs!
Other things I tried were hydrogen peroxide therapy which helps some IC patients
but I was unable to continue it due to an unusual reaction; also took, infused
and had injected vitamins/minerals and began taking HPD's special nutritional
supplements including the Pyc-C, Poly-Dophilus, and N-Acetyl-Cysteine. All of
these efforts seemed to help bring my ravaged bladder (and nearly useless body)
under control. This was not an easy path nor was it a straight path to wellness;
if anybody tells you there is an easy path in overcoming IC, they are lying.
I worked part-time until my body gave completely out in December 1992. At that
time, I was down to four hours/week when I could even work that much;
thankfully, I had a very understanding employer at that time. I long ago had to
quit my writing/editing position with an education association and was
attempting to do whatever I could to help my husband put three children through
college. Our last child graduated in December 1993 so I didn't quite make it.
There were many twists and turns and ups and downs as IC is known as a disease
of flares and remissions. But I continued to get better with the IC until at
last I was able to wean off the antibiotics altogether over a two+ year time
period. I never encountered antibiotic resistance, but layers of bacteria
continued to come from the bladder wall; at one time I had 7 bacteria show up on
a broth culture about a year into treatment. Did I panic? Well, I was certainly
surprised, but I was having so few symptoms by this time, my doctor and I
decided to "stay the course" and we changed nothing. The follow-up
cultures showed just 5, then 3, and then none! Augmentin never let me
down--ever. It took me nearly 2-1/2 years to overcome IC but I was quite
cautious; I stayed on the antibiotics longer probably than most would need to;
they were my "security blanket" especially when I had weaned myself
down to just one 125mg dose a day over the 2nd year time frame. I wouldn't even
use the word "cured" until many people convinced me I should and I
still usually say "my bladder is healed" and that is sufficient.
Not now because of IC but because of what happened during the diagnostic cysto
in 1991, I have other medical problems I grapple with daily. However, my overall
health, energy and sense of well-being have returned and stay as long as I am
careful not to overdo (which is I find, the most difficult thing to do when you
feel good) and continue to take lots of supplements to maintain/ enhance my
health. I know that I never will be without extensive supplements as I never
again will take a chance with further endangering my health status.
As mentioned above, the path was not easy nor straight, but once my IC symptoms
were gone and my bladder healed, I shared my passion for IC by facilitating the
NVA IC Support Group for two years (we separated from the ICA in 1994 or
so--they placed too many restraints on the group, and you can't do that with
such a creative bunch as we had). If it hadn't been for this support group, I
wouldn't have known where to get the help I needed nor, I'm convinced, gotten
better. We moved (late September 1996) to a more rural area of Virginia; I miss
my support group contacts there though we stay in touch.
During my "IC" years I attended the support group as I was able and
continued to learn everything I could about IC. And because my IC did get better
and I had continued to read and collect everything written or known about IC, I
became a person to whom many in our group turned to for answers to their
questions. In addition, I began to receive calls from IC patients all over the
country who were desperate for help. Not a medical person by training,
nevertheless, my longtime medical experiences gave me a "medical
education" that humbly enables and empowers me to be of help to others. I
call it my DWL (Dealing with Life) degree!
In January of 1995, after my healing from IC and return of better brain
function, I pondered what all I had been through and how I could best help
others NOT have to go through what I had. I couldn't write a book at that time,
and besides I wanted to help IC patients more immediately. Thus began the
not-for-profit Interstitial Cystitis Information Center (ICIC) out of my home. I
had volumes of material that I knew could be useful to other IC patients who had
none. Word of mouth and a mention or two on the Internet opened the door, so to
speak, to our home to the many who need immediate and relevant info on IC.
Although I have hundreds of IC articles, keeping that list updated became
impossible, so I now keep a listing of "Top Picks/Top Ten" articles
available on the website which I try to change periodically. The costs for these
articles are as low as they can be to cover researching, obtaining, reproducing,
and preparing the info for mailing to those who request any one or all of them.
At almost the exact same time we opened the ICIC, I was approached by Hank Liers,
Ph.D., President of Health Products Distributors, (former nuclear physicist),to
become a distributor for him so that I could even better help IC patients (NO
pyramid scheme). Most of the products are Pathway developed by Hank and his
partner, a pharmacologist, mainly for medical personnel, but we carry other high
quality name products as well. I felt I was being led to do both the ICIC and
HPD (with my husband as partner and helpmate) because they so beautifully
complement each other. Hank has worked diligently to develop natural supplements
which are especially good for sensitive individuals and some products
specifically designed for IC bladders such as the Pyc-C (pick-see). He developed
an "IC Supplement Program" which has helped untold numbers of IC
patients. We have recently added IC Program II because of newer product
developments; this program is also having even better success with IC patients.
In July of 1994, I was awarded Social Security Disability (not much money as I
only worked part-time while raising three children and began working only after
the 3rd one went to kindergarten) but it helps with continued medical expenses.
It was awarded mostly for numerous other complex medical problems that developed
over the years after the disastrous cysto in 1991. (You can, however, today get
disability based on IC.) Within ten days of that cysto, I was diagnosed with the
first of what was seemingly Trans Ischemic Attacks (TIAs) or mini-strokes. In
reality, they were mini-stroke-like episodes or "micro-strokes" as
mentioned above. With these attacks (as I came to call them), I would have
extreme weakness, left-sided paresis, and whole body toxicity which in turn led
to short-term memory loss, metabolic and myalgic encephalopathy, brain fog,
trouble searching for words, extreme fatigue unrelated to exertion, and later
pain throughout my entire body.
For a long time, I considered my day a success if I could just get dinner on the
table for my family at night and maybe a load or two of laundry done. It was
amazing how unimportant other "things" became that one thought had to
be done. The only writing I could do were scribbles in my journal because just
thinking was a problem most days (remember I was a professional writer/editor
BEFORE). Recent testing has shown I lost 30 IQ points because of the brain
injury sustained in 1991. Before then, my IQ ranked in the 99th percentile. It
is thought that the brain can be resuscitated over time, and we are working hard
to accomplish that every day.
I had to give up voracious reading, counted cross-stitch (I could no longer keep
the count!); jigsaw puzzles, singing in my church choir or otherwise, even
listening to music--my injured brain seemed to need quietness. I spent a lot of
time meditating on just what was happening to me; I watched the world go by my
backyard window as I lay unable to do much of anything but rest, rest, rest.
Other diagnoses came: Reiter's Syndrome (RS), Chronic Fatigue Immune Dysfunction
Syndrome (CFIDS) a.k.a. Myalgic Encephalopathy, Fibromyalgia (FM), hypokalemia
(low potassium), sleep apnea (a by-product often of CFIDS but which I have since
overcome); osteoporosis (also now just osteopenia), and today, mycoplasma
fermentans (oro-pharangeal area) and jaw cavitations/osteonecrosis/traumatic
bone cyst in the lower left jaw area with multiple oral surgeries (remember
again the final cysto and "very difficult intubation"(?)--my teeth/jaw
were damaged). Recently I underwent 30 hyperbaric oxygen treatments (HBO - no,
not the movies) to help get more healing oxygen to the diseased jawbone areas.
The jury is still out as to whether healing has occured with these treatments.
Also, remember the low potassium before the 1991 cysto? Finally I learned that I
lose potassium regularly and was recently diagnosed with primary
hyperaldosteronism , for which I must take a special daily medication called
Spironolactone, as well as a potassium supplement.
While searching for better health, I have seen well over 100 doctors and one
nurse practitioner. Sadly, of all whom I've been to, I can only say that maybe
10 cared about me, the whole individual, the patient. I would ask every doctor
if he or she wanted to be a medical detective in helping me figure out my
complex problems; most only cared about what fit into their medical textbooks
(which I never did of course) and their patient time allotments. Never waste
your time on a doctor who isn't willing to work for and with you because you
won't get anywhere and a year from now, you'll be in exactly the same place you
were then or worse! Ask for and get a verbal "partnership" agreement
with whomever you place your trust. With IC, everyone knows that isn't going to
be an easy task, but if you don't even have someone in your corner to help you,
how are you going to ever get better?
We sought help from the Mayo Clinic (useless), the Cleveland Clinic (helpful in
ruling out the TIAs), but it was Dr. Paul Cheney, specialist in CFIDS, of The
Cheney Clinic now on Bald Head Island, NC, who finally put "me" and my
medical history as a whole person together in December 1993. The first time I
saw him, he spent 4-1/2 hours with me and was astounded at what I'd been told or
not told. He was also instrumental in helping me obtain SS Disability based on
my IC, CFIDS, FM, and Reiter's Syndrome.
That I can sit this day and write this article about my success story with IC is
a tribute to Dr. Cheney's CFIDS' programs of treatment, as well as outstanding
help with ongoing medical problems by my longtime caregiver, Dr. Norman W. Levin
of Aldie, VA. He still compassionately works with me to integrate my healthcare
needs. When I developed a rash on my body several years ago (comes and goes but
is not Lupus), he referred me to a definite "medical detective"
dermatologist, Dr. Patricia Duprey, in Danville, VA, who continues to help me
weekly by fax, phone or regularly scheduled blood work and visits to her office.
Believe me, she is MORE than a dermatologist; she has devoted hours upon hours
of her time working tirelessly to figure out me and my not-so-usual body and is
always ready to tackle whatever is at hand when I see her on regularly-scheduled
office visits every month to six weeks. She simply cares and enjoys a "good
challenge." I certainly fit that category...Now into the jaw cavitations/osteomyelitis/
osteonecrosis/mycoplasma fermentans arena, another outstanding and kind-hearted
doctor of medical dentistry, as well as a doctor of integrative medicine,Dr.
Blanche Grube, of Scranton, PA, is continuing her best at efforts to rid me of
the cavitations. She hasn't given up in helping me either. I am indeed grateful
to her as well. Our next step is to have hyperbaric oxygen therapy treatments in
VA (20 or more in all) for the osteomyelitis (refractory). Time will tell if
these will end the jaw problems.
Before Drs. Cheney, Levin, Duprey, and Grube, another doctor, Sohini Patel,
literally saved my life several times over with her nutritional treatments and
loving care. And of course, Dr. Fugazzotto, who first found the enterococcus
bacteria in my bladder, and BJ Czarapata, CUNP, who also cared. Several clinical
psychologists who listened so helpfully and knew I wasn't crazy, and wonderful
chiropractors, massage/physical therapists who still try to keep the kinks out
of my body: I know they care and they continue to be of great help to me.
I write all this so that whoever reads it may know there are indeed GOOD doctors
in this world and that for themselves as individuals/patients, they must NEVER
stop looking for them. And even with all the GOOD doctors they may work to
eventually find, to remember that true healing must come from within; for even
our BEST doctors are ONLY the instruments through and by which we are enabled to
once again achieve health.
The ICIC/HPD is my mission in life for as long as that may be or that I feel I
can be of help. However, I never know for certain when I can work on the
computer/internet, etc. All I can say during these past 7+ years is that my IC
IS gone and that indeed is wonderful. I believe I would not have lived as a sane
person or even lived at all if I had had to contend with IC along with all the
other medical problems that developed after the "diagnostic" 1991
cysto. On the other hand, the work involved with the ICIC/HPD has given me
additional inspiration for living: the importance of helping others. When you do
this, you miraculously forget your own problems.
I have a passion for IC patients; I empathize with their pain and unhappiness at
what this disease does to ruin their lives. I love the people with whom I talk,
correspond or email. I get more than I ever give from these individuals who only
want to get better and enjoy normal lives again.
As Larry Dossey, M.D., in Recovering the Soul says: "Nobody cares how much
you know unless they know how much you care."
NOTES: Recently, the numbers of IC patients has been "upgraded" from
450,000 to 700,000, a number I feel is still totally unrealistic. There are, in
my opinion, millions who have this disease but haven't been diagnosed or have
been improperly diagnosed. A recent urology journal stated there were 17,000,000
women with "overactive" bladder, the most recent catchword popular
with urologists. Probably most have IC but don't know it.
IC is thought possibly to be infectious, autoimmune, hormonal and/or
neurological in origin. For some, diet is an important aspect, as is stress,
lifestyles, etc. In actuality, all of the above may account for important parts
in any individual's IC. There doesn't seem to be one cause or one cure that
works for everyone.
It is, however, important to note that IC is not a new disease at all. In 1907,
a doctor named Hunner, identified hemorrhagic pinpoints in the bladder wall seen
under cystoscopic hydrodistention as ulcers; thus the term "Hunner's
ulcers" applies to about 10 percent of those found to have classic IC such
as myself. During a cysto performed under general anesthesia (can also be done
under an epidural which can be far less dangerous), the bladder is filled with
water, then drained and examined to see if there are raw and bleeding areas or
ulcers. This of course used to be the first diagnostic test done for IC; a
simple broth culture can now be done and a cysto later if still deemed necessary
by the PATIENT and DOCTOR together. Hunner believed then in 1907 that IC was
caused by an infection. Why have we gone so far backward?
Kay's story can also be found on her website at http://www.moonstar.com/~icickay/
February 22nd 2003- Today the IC community grieves for our beloved Kay Benton
who passed away last night. Kay struggled with a multitude of medical problems
for many years including IC. She spent much of her life fighting bravely, and
through all her pain and suffering she never stopped working to help others. She
is a person who made a positive difference in people's lives. A rare gem who
cared about others.
We offer our sympathy and prayers to her family, friends, and most of all her
husband Duane. The man who remained by Kay's side through it all. We should all
be so lucky to be blessed with such a loyal companion in life.
Kay's work remains at the IC Information Center at http://www.moonstar.com/~icickay/
She will be greatly missed!!!