Interstitial Cystitis is a chronic pelvic pain
disease directly involving and affecting the bladder. Interstitial
Cystitis is regularly referred to as IC for short, and throughout
this paper, both terms will be used. Common symptoms of
Interstitial Cystitis include frequency, urgency, and pain.
Frequency is defined as having the urge to urinate many times during
the day and night. This can be the only symptom in a patient that
leads to the diagnosing of IC. Urgency is the immediate urge and
need to urinate. If a person can not go to the bathroom right away,
urgency often causes pain, as a result of the bladder going into
spasms. Although a relatively small organ in the body, the bladder
can cause severe and distressful pain throughout the entire body.
When the bladder causes pain in other organs or regions of the body,
it is labeled as “referred pain”. Many IC patients experience
referred pain up and down the back, in the kidneys, and down their
legs, especially in the right leg and right knee. Pain in IC
patients typically centralizes itself in the lower abdominal,
urethral, or vaginal areas.#1
Interstitial Cystitis overlaps several other
diseases with its symptoms. These diseases include: Irritable Bowel
Syndrome, Vulvar Vestibulitis, and Fibromyalgia. All of these
diseases include irritation and inflammation of the genital area,
severe abdominal and back pain, urgency, and frequency. To
complicate matters further, IC is not yet very widely known about or
dealt with frequently in the medical community, so many are still
not completely aware of the disease, its symptoms, and how to treat
a patient who comes seeking help or answers for his or her IC
problems. If any person is experiencing painful urination,
frequency, urgency, and discomfort of any level when going to the
bathroom or in between trips to the bathroom, he or she should make
an appointment immediately with a urologist. Once a urologist
examines and evaluates the new patient and their symptoms, a urine
culture will be taken and tested to check for any infection, blood
in the urine, or any other abnormal conditions. A patient
experiencing pain in the genital region can certainly be suffering
from a number of other diseases that are checked out and either
eliminated or tested for, depending on what the doctor finds. These
other possible diseases and conditions include Bladder Cancer,
Endometriosis, Tuberculosis, vaginal infections, kidney problems, or
sexually transmitted diseases.
Interstitial Cystitis does not occur because of
an infection in the bladder or the urine. Instead, IC is caused by
the bladder failing to produce its inner lining and exposing its
nerve cells to the urine passing through. If an infection is not
present in the patient’s urine, a cystoscopy is usually performed
with hydrodistention. This procedure is done under general
anesthesia and allows the doctor to look inside the bladder with a
scope and camera to effectively make a general assessment on the
current condition of the bladder, helping in treatment and
medication options. A cystoscopy is also used to locate any ulcers,
which cause bleeding and constant pain to the patient. The primary
source and cause of IC is still undetermined.
Records showing strong evidence of Interstitial
Cystitis dates back to 1870 with written documentation from Lawson
Tait describing two cases of young women with bursting bladder
ulcers and both experienced pain, dysuria, and urinary frequency.#2
In 1914, Guy Hunner discovered what is now named after him,
“Hunner’s Ulcers”, and Hunner was a strong activist in pushing
surgical excision of the ulcers as a best treatment option and
relief provider.#3 Hunner’s ulcers are the worst kind of bladder
ulceration that an IC patient can have and the pain caused by them
is tremendous and often unbearable. Inflammation and painful
irritation are caused by Hunner’s ulcers acting up and bleeding.
Despite this disease being documented and treated
since the late 19th century, there is still no cure. Each patient
has different coping methods and strategies and every IC patient is
completely different. Because the urine directly encounters the raw
open nerves of the bladder, IC patients tend to watch their diet
very closely, cutting down on acidic food such as pickles, spicy
foods, and tomatoes, along with many other food items that cause bad
reactions in the bladder. Along with amendments to one’s diet, IC
patients find ice packs to be a great comfort and temporary pain
reliever. Heating pads also help relieve pain and discomfort from
referred pain in the back and in the kidneys. Doctors also suggest
bicarbonate sitz baths where the bath water is lukewarm and mixed
with baking soda. This mixture is said to relax the muscles,
cleanse the area, and calm the bladder. A regular sleep schedule
and low stress level is always highly suggested by doctors to IC
patients which is almost humorous to most who must work and live
full-time lives on top of treating a chronic disease.
Medications for this disease are limited, but
Elmiron (pentosan polysulfate sodium) is the primary drug for
Interstitial Cystitis. Almost all IC patients take Elmiron orally
on a daily basis and using the drug in bladder instillations is
becoming more popular and useful. The drug is inserted directly
into the bladder through a catheter and is hypothesized to coat the
bladder walls, creating a temporary bladder lining. This treatment
helps protect the bladder wall nerves from acidic urine, the
bladder’s frequent visitor. Other drugs that have proved to provide
relief have included antidepressants such as Elavil and Zoloft, and
antispasmodics, bladder analgesics, antihistamines (Allegra), and
muscle relaxants.#4
Beyond oral medications, bladder instillations
using DMSO have provided many patients with relief for a short
while. DMSO, an industrial solvent, is inserted into the bladder
through a catheter, retained by the patient for a determined amount
of time by the doctor, and then the patient is drained, hopefully
feeling relief for a day or two. Bladder distentions can also be
performed by a doctor in which the bladder is stretched when filled
with water under general anesthesia.#5
Clinical trials and national studies are finally
being started on this devastating disease and most of the action is
taking place at University of Maryland and at John Hopkins in
Baltimore. And this year, Interstitial Cystitis has finally made
the NIH’s national agenda. This is very exciting and promising to
IC patients. There are many support groups and associations which
provide advice, guidance, and hope for IC patients. The
Interstitial Cystitis Association (ICA) was founded in 1984 by Dr.
Vicki Ratner, a sufferer of the disease. The national association
provides patients with updates about IC, breakthroughs with IC in
the medical community, self-help tools, and primarily, support for
all IC patients. Hopefully with the NIH focusing on Interstitial
Cystitis this year, more progress can be made to locating the
primary cause and finding a cure.
Terri: “MY IC Story”
Each of us with IC has a “story;” our version of how
our pelvic pain limits our lives. I have arrived at the blessed
symptom-free remission state that began with finally trusting that my
pain free day would make it for a week, then to a month, and for me, now
almost two years. The turn toward conquering my pelvic pain came when I
realized that I had to take control. Our mutual dilemma is how do you
find the tools?
The Start
I am a single woman with two children, a girl twelve
and a boy ten, a full time job, and a house that makes its repair
demands. My life, like yours, takes time and energy. To be diagnosed
with interstitial cystitis (IC) was the crazy combination of relief to
have a reason for my pelvic war of pain and the devastation of having
the words “chronic” and incurable” sink in.
It has been close to two years and I am finally where
I need to be. I was tired of the pelvic pain. I could no longer stand to
go to sleep in pain, and wake up in pain. My health history was a
persistent fight with kidney stones. Kidney stone removal meant surgery
every two to three months for almost a year and a half. Once the stones
were gone I still had pelvic pain.
In search of a reason for my continuing pelvic misery
I went to an internist, an endocrinologist and then to my gynecologist
who mentioned IC. This led to the Dr. Davis, urologist, and a
cystoscopy in the hospital to take a good look inside my bladder. The
exam confirmed the diagnosis of IC. The question was how do I go from
the diagnosis to control?
Diet Connection
The first step was to look to my diet. The chemical
mix we put in our mouths every day of our lives makes a great
difference. I went to the book store and bought cook books, and read
all the dietary literature I could find. I eliminated every food and
drink product from my diet that had a chance of causing an inflammation
reaction. I taught my self to eat all over again.
My favorite IC cook book is “A Taste of the Good
Life” by Bev Laumman. Her cook book is my IC bible. The diet helped a
lot, although I still had flare-ups.
My next step was to discover the triggers for the IC
flares. I became a reader of labels. If a label says “all natural” I
do not believe it. If there are additives listed that I can not
pronounce I do not buy the product.
As an example of problem additives, MSG (monosodium
glutamate) shows up in food in many forms. MSG is a tenderizer and
flavor enhancer and it produces misery in a sensitive bladder lining.
Not only is MSG in grocery sold products but fast food outlets and
restaurants use many prepared foods that have it blended into their
foods. I ask questions and everyone I encountered has given me a list of
their foods that contain MSG. I have come to the conclusion MSG is a
“poison” for me.
Stress
Stress, tension, anxiety, strain, all words that make
the IC poison. This truth is so much tougher to handle than any diet.
The long list of books that are written about learning to deal with
stress shows how much a part of our lives it is.
I have eliminated some of the stress factors in my
life and that light at the end of the pelvic pain tunnel became brighter
because the stress factor was reduced.
My basic advice about dealing with stress: it maybe a
family situation, it maybe a person, it maybe a job, it maybe finances,
it may be having picked the wrong color for your bedroom, the stress
list is endless. Start by taking a slow, deep breath and know that you
can release your self from so much of inner turmoil. I found out I can
not help everyone. That realization released me from a cycle of stress.
Education
Love ones, friends, close work mates, should be
educated as to what IC is.
The term interstitial cystitis is more than a mouth
full. Jo told me that the name is now being broadened to IC/pelvic pain
syndrome or PPS. I hope that this change will make having a conversation
with physicians more directed and less confusing.
My education about IC/PPS self help began about a
year ago. I started giving myself bladder instillations of Elmiron® once
a week and doing my own rescues.
The first time I catheterized myself had to be the
funniest thing I have ever done. I laughed at myself and could only
think to myself if Dr. Davis and Jo Davis were flies on the wall they
would fall off laughing. I have finally become a pro at doing my
treatments and must say I feel they have helped a lot! Being able to do
my own rescues is great. I take control quickly and save myself days of
misery.
I fought the IC/PPS battle for a long time. I am
happy to say that this past year has been the best. Do I have my days
of pain clouds gathering? Yes, but I have realized I can take control.
If I can do it anyone can. Don’t let IC/PPS control you. You have to be
the one who controls it. It is hard but once you get there you will see
that life becomes easier. The life you use to have comes back. Don’t
give up. Help is out there. Take control! Terri
#1
www.ichelp.com/whatisic/AnIntroductionToIC.html
#2 Sant, Grannu. Interstitial Cystitis. Lippincott -Raven, New
York. c. 1997.
#3 Sant, Grannu. Interstitial Cystitis. Lippincott -Raven, New
York. c. 1997.
#4
www.ichelp.com/whatisic/AnIntroductionToIC.html
#5
www.ichelp.com/whatisic/AnIntroductionToIC.html
