Interstitial Cystitis: What You Need to Know
Interstitial cystitis is a chronic and debilitating disease of the urinary tract and bladder that affects approximately one million people. It may not be just one singular illness but one incorporating many different illnesses. There is an inflamed and irritated bladder wall that leads to many bladder symptoms. The bladder wall of an IC patient will have stiffening and scarring of the bladder, less bladder capacity as a result of the scarring, small pinpoint bleeding on the bladder (glomerulations) and ulcers in the bladder lining (Hunner’s ulcers). 5-10% of IC sufferers will have Hunner’s ulcers, the rest have a non-Hunner’s type. So much isn’t known about the illness, even though it has been around for a while now.
This article deals with what IC is, what it isn’t, the signs and the symptoms. A general guideline for interstitial cystitis is from the NIDDK, and although it has come under fire and scrutiny as it doesn’t incorporate all of the prevailing symptoms and has some things included as an exclusion that some people with IC do indeed have, it is meant as a oversee of the illness and not a conclusive.
NIDDK Research Definition of Interstitial Cystitis
Inclusion Criteria
1. Cystoscopy – glomerulations and/or classic Hunner’s ulcer
2. Symptoms – bladder pain and/or bladder urgency
Exclusion Criteria
1. Bladder capacity greater than 350cc on awake cystometry
2. Absence of an intense urge to void with the bladder filled to 100cc during cystometry using a fill rate of 30-100cc/min
3. Demonstration of phasic involuntary bladder contractions on cystometry using the fill rate described in number 2
4. Duration of symptoms less than 9 months
5. Absence of nocturia
6. Symptoms relieved by antimicrobials, urinary antiseptics, anticholinergics, or antispasmodics
7. Frequency of urination while awake of less than eight times a day
8. Diagnosis of bacterial cystitis or prostatitis within a 3-month period
9. Bladder or ureteral calculi
10. Active genital herpes
11. Uterine, cervical, vaginal, or urethral cancer
12. Urethral diverticulum
13. Cyclophosphamide or any type of chemical cystitis
14. Tuberculous cystitis
15. Radiation cystitis
16. Benign or malignant bladder tumors
17. Vaginitis
18. Age less than 18 years
This is a research definition only (for inclusion of patients in clinical trials) and is not necessarily applicable to diagnoses made in clinical practice. The major difference in the less stringent ICDB inclusion criteria for the diagnosis of IC is that cystoscopy (and its related diagnostic criteria) is an optional criterion for entry into the ICDB study. The rigid urodynamic exclusion criteria in the NIDDK definition do not exclude patients from an ICDB IC diagnosis. IC, interstitial cystitis; ICDB, Interstitial Cystitis Database; NIDDK, National Institute of Diabetes and Digestive and Kidney Diseases
90% of all interstitial cystitis patients are women, ranging in age from 20-50 years old. However, that does leave a small percentage of men that will have the illness. Men with a diagnosis of prostatitis or prostatodynia may really have interstitial cystitis. Of those with IC, men and women; 15 % are Jewish, 25% are under 30, and over 50% will have a remission of symptoms that will range from 1-80 months. The median age of onset is 40-43, although I personally know IC patients that are as young as 17 and as old as 62 when their symptoms first began.
The causes of interstitial cystitis are unknown, but there are many theories. There is no single definable presentation and the symptoms will usually begin mild and will grow severe; reaching a plateau at the 5 year mark. It is where the most flares and the most remissions will occur. Some current theories as to what causes IC are:
1) IC is an autoimmune response to infection or unknown bacteria
2) Substances in the urine are irritating the bladder wall in people with IC
3) Neurological problems in bladder wall
4) Mast cell activation
5) GAG (Glycosaminoglycan) layer deficiency
6) Lymphatic disease
A few things are known about its causes though. It seems not to be caused by heredity or by any environmental toxins. Many report that they started having symptoms after a surgery. Studies will have to be done to determine if surgery plays a part in the cause of IC.
The symptoms and signs of interstitial cystitis are varied and not every IC patient will have all of them. It is a difficult illness to pinpoint and this is meant only as a guideline to some of the symptoms that the interstitial cystitis patient may have.
1) Pelvic and perineal pain and pressure
2) Urinary frequency: over 8 times/day; average is 16 times/day; can be up to 60 times/day
3) Nocturia (excess urination at night)
4) Urinary urgency: urge not relieved by voiding
5) Over 9 months of symptoms
6) Dyspareunia (painful sex)
7) Hematuria (blood in urine)
8) Symptoms worsen during menstruation
9) Diminished bladder capacity
10)Penis and scrotum pain and pressure
11 )Dysuria (pain on urination)
12) UTI (Urinary tract infection) symptoms that do not improve upon antibiotic treatment
50% of IC patients will have pain while riding in a car or with any prolonged sitting function; 63% are unable to work full time. Perhaps the most staggering statistic of IC is that interstitial cystitis patients are 3-4 times more likely to commit suicide than those who do not have the illness and that they rank below kidney dialysis patients in quality of life.
IC is an illness with many misdiagnoses. Typically you will see patients that will list their current conditions and you will see not just IC, but endometriosis, chronic fatigue syndrome, etc. There is a sister group of five illness where the symptoms and signs will overlap. Those 5 sister illness are in chapter Six: Related Conditions and are Irritable Bowel Syndrome, Chronic Fatigue Syndrome, Lupus, Endometriosis, and Fibromyalgia. Other illnesses that IC can be misdiagnosed as are as follows:
1) UTI, bacterial cystitis
2) Vulvodynia
3) OAB (Over active bladder)
4) Prostatodynia
5 )Nonbacterial Prostatitis
6) Urethritis, inflammation or infection of the urethra
