What is interstitial cystitis?
For many years Interstitial Cystitis (IC) was thought
to be a chronic bacterial infection. The theory was
that the bacteria would be present under the epithelium,
and become resistant to normal antibiotic treatment.
Since the bladder is part of the urinary tract system
IC was managed in the past by urologists, but they
seemed to have treated this disease as a stepchild,
and ignored it to a great degree.
We now know that IC is part of an immune
system dysfunction that allows the protective coating
of the bladder to be denuded in small areas. The protective
coating (glycosaminoglycanmucus-mucin layer) allows
the urine to sit in the bladder for hours without
causing any symptoms. When this layer is missing,
the underlying cells can become irritated.
Symptoms
The symptoms of IC can vary greatly. The most common
symptoms are blood in the urine (hematuria), pain
with intercourse (dyspareunia), pelvic pain, pain
with urination (dysuria), and back pain. Many women
with IC urinate frequently during the day and night
(nocturia). In a few patients, the symptoms can be
so severe that travel outside of their home is impossible.
They urinate as often as every five minutes.
An analogy to why IC causes pain is to look at a
baby in diapers. When the baby urinates it often smiles,
but think of a baby with diaper rash. When the baby
urinates it doesn’t smile. In fact it cries.
This is because urine is an irritant. Urine contains
many byproducts of waste, especially potassium. Potassium
is most likely the cause of irritation in the bladder.
Symptoms seem to increase when allergy seasons occur,
or when the patient eats foods rich in potassium.
Who gets interstitial cystitis?
It is unknown how many undiagnosed cases of interstitial
cystitis may be present in the gynaecologic pelvic
pain population [2], but newer data shows the prevalence
may be as high as 25% of women [3]. Some studies have
shown a link with endometriosis [1], and IC has been
labeled as “The Evil Twin”. 80-90% of
women with endometriosis have been identified with
IC. This may help explain why some patients treated
for endometriosis have not had relief from pain after
surgical and medical therapies.
Diagnosis
Diagnosis can be difficult, since some symptoms can
be so mild that patients may not realise they have
IC. When a woman suspects she may have IC, she should
go to a specialist that deals with pelvic pain and
endometriosis. Just as urologists have ignored IC,
so have most gynaecologists.
Two ways to diagnose IC are:
1. By cystoscopy (a camera in the bladder)
2. By PST (potassium sensitivity test)
A cystoscopy is performed in the hospital as an outpatient
procedure. The patient is asleep, and the bladder
is overdistended with fluid while the camera is in
place. As the bladder is drained, small bleeding areas
will occur on the surface of the bladder. A biopsy
can be performed at this time that may help in the
diagnosis of IC. When blood is in the urine, this
procedure helps confirm that a more serious problem
doesn’t exist.
The PST is performed in the office while the patient
is awake. A very small catheter is placed in the bladder,
and a small amount of water is placed in the bladder.
Even with IC this should not cause any pain. The water
is drained from the bladder, and a new solution containing
potassium is placed in the bladder. A normal bladder
will not respond to this solution, but a patient with
IC will experience pain or discomfort. If pain is
felt, a rescue solution is immediately placed in the
bladder to numb the bladder.
Treatments
There are, and always have been, many ways to try
and treat IC. Early methods were permanent oral antibiotics
and DMSO (dimethyl sulfoxide). A few patients responded
to those treatments, but success was not overwhelming.
In mild cases, some patients respond to Detrol and
Ditropan.
The treatment that seems to have the greatest response
is called Elmiron (related to Heparin, a blood thinner).
This medication allows the coating of the bladder
to regenerate. The patient may not see a response
for three to six months, and the medication is relatively
expensive. An antihistamine is also given to help
diminish the release of histamine, especially during
pollen season. The medicines may need to be taken
forever, but when they work relief can be dramatic.
A helpful diet is one that is low in potassium. Foods
high in potassium include: tomatoes, pineapple, chocolate,
and Jalapeno peppers. If symptoms persist, then pain
clinics and surgical options are available, but these
are last step approaches.
Self help groups
Endometriosis patients have self
help groups that can provide information and research,
and the same is true for IC patients, where the Interstitial
Cystitis Association's website provides lots of
useful information.
Hopefully, as more patients and physicians become
aware of IC, more studies will be done to help diagnose
and treat the IC patients.
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REFERENCES:
1. Chung MK, Chung RP, Gordon D. Interstitial cystitis
and endometriosis in patients
with chronic pelvic pain: The “Evil Twins”
Syndrome. JSLS 2005 Jan-Mar;9(1):25-9.
2. Parsons CL, et al. Gynecologic presentation of
interstitial cystitis as detected by
intravesical potassium sensitivity. Obstet Gynecol
2001;98(1):127-32.
3. Parsons CL, Tatsis V. Prevalence of interstitial
cystitis in young women. Urology
2004 Nov;64(5):866-70
