Confident Choices® Hope, Help, and
Healing for Interstitial Cystitis Patients
What Is Interstitial Cystitis?
Interstitial cystitis, or IC, is a
chronic pelvic pain syndrome originating in the bladder. Other
names for IC include painful
bladder syndrome (PBS), bladder pain syndrome (BPS, used primarily in Europe), and
hypersensitive bladder syndrome
(HBS, used primarily in Asia). Men may also be diagnosed with
chronic prostatitis (CP),
which shares similar symptom characteristics with IC.
Patients with IC
experience urinary pain, frequency, urgency, and nighttime urination
that cannot be attributed to other causes. Although symptoms of
interstitial cystitis can be confused with a urinary tract infection,
urine from an IC patient does not show any bacteria when cultured.
Sometimes I describe IC to people as the difference between a cold and
allergies. A person may sneeze with both, but a cold is caused by a germ
and allergies are not.
IC have a damaged bladder lining. Both the glycosaminoglycans (GAG) layer (the
protective mucous coating on the surface of the bladder), and the
urothelial layer (the skin-like barrier that transmits the messages of
pain and urgency to the brain) can be damaged in a bladder causing IC
symptoms. Glomerulations, or petechial hemorrhages, are often observed
when a patient undergoes a cystoscopy under anesthesia, however, there
is some concern that this damage could actually be caused by the
procedure itself. Mastocytosis (almost like having hives in the bladder)
is also a common finding. About seven to nine percent of patients
actually have ulcerations in the bladder lining.
For diagnostic purposes, IC pain generally worsens as the bladder fills
with urine and is relieved upon emptying the bladder. The pain
may or may not be perceived as coming from the bladder. Many patients
report that their pain is urethral, with varying degrees of pelvic pain.
Other patients report back pain, shooting pain down the legs, and pain
that is positional—for example, sitting in one place too long can
trigger symptoms. In addition, both men and women report pain with
intercourse. Men with IC often experience penile pain at the moment of
ejaculation, whereas women might experience pelvic pain up to 24 hours
after intercourse. Women’s symptoms may also increase premenstrually and
at ovulation. IC pain can be visceral, which means that the pain signals travel to the same area
of the brain where emotions are generated, so IC patients may appear to
be highly emotional. In addition, IC pain can be neuropathic. Simply
put, the person is in pain for so long that the nerves become damaged
and begin to send more intense pain signals over time.
The other two cardinal symptoms are frequent urination and an unexpected
urge to get to the bathroom immediately. Patients have reported
having to use the bathroom up to 60 times a day. Sleep disruption from
these symptoms is often a major cause of distress for patients.
it is valuable to know those clinical descriptions of the disease, no
definition of IC is complete without the vivid descriptions IC patients
use to explain how they feel. Often patients will describe the pain as
if they have “razor blades or battery acid” in their bladders. Patients
may be frustrated about the fact that they are fine one moment and
doubled over in excruciating pain the next. Or, they will express defeat
and resignation saying, “I may as well put a
mattress in the bathroom; I go so often at night.”
IC patients often have other coexisting
conditions including irritable bowel syndrome, fibromyalgia, chronic
fatigue syndrome, vulvodynia, and various allergies, all suggesting a
connection with the immune system may be involved in some way. Patients
may also experience a variety of mood or mental health disorders related
to their disease. People living with chronic pain often experience a
tremendous amount of stress, suffering emotionally as well as
physically. Their social lives may be disrupted because of their
symptoms, and their intimate relations strained. The disability of many
with IC is very real; nearly
half of all IC patients in 1987 could not hold full-time jobs.
Relationships can be strained, and many patients become depressed.
The good news is that a
well-designed and individualized treatment plan can moderate symptoms
for most IC patients. Oral medications, intravesical
instillations (medications put into the bladder via a catheter),
physical therapy, and a variety of self-help methods are the most common
treatments. One of the most conservative treatments, dietary
modification, is helpful for over 90% of IC patients—a claim that no
other treatment can make to date. In fact, many patients can regain an
acceptable quality of life by simply eliminating the most abrasive
foods—coffee, tea, chocolate, alcohol, citrus fruits and juices, chili
spices, tomato products, and soy products. The most important thing to
remember is that there is always hope for healing, and many patients
find a way to coexist with their fragile bladders, living normal, active