2. How is IC diagnosed?

At this point in time, the patient's history and clinical findings (urinary urgency, frequency and pain in the absence of infection), along with cystoscopy with hydrodistention under general or regional anesthesia, are the "gold standard" for the diagnosis of IC. To make a proper diagnosis of IC your urologist will:

1. Take urine cultures to determine if there is a bacterial infection present.

2. Rule out other diseases and/or conditions that have symptoms resembling IC. These diseases may include bladder cancer, kidney problems, tuberculosis, vaginal infections, sexually transmitted diseases, radiation cystitis and neurological disorders. Endometriosis and vulvodynia also need to be ruled out. However, they may exist concomitantly with IC.

3. Perform a cystoscopy with hydrodistention under general or regional anesthesia if no infection is present and no other disorder is discovered. Cystoscopy during a routine office visit may not reveal the characteristic abnormalities of IC. It is necessary to distend the bladder under general or regional anesthesia in order to see the pinpoint hemorrhages on the bladder wall that are the hallmark of this disease. However, ten percent of patients do not have pinpoint hemorrhages or ulcers on the bladder wall, although they have all of the symptoms of IC. A biopsy of the bladder wall may be necessary at this time to rule out other diseases such as bladder cancer and to assist in the diagnosis of IC.

No other diagnostic tests for IC are considered as reliable as cystoscopy with hydrodistention under general or regional anesthesia. However, researchers are currently developing pain-free, less invasive, and more accurate diagnostic tests. Two new potential urinary markers, GP51 and an antiproliferative factor (APF), are currently under investigation as possible diagnostic tests. These tests, which involve a urine sample only, would help patients receive a diagnosis of IC more quickly and easily.

3. How common is IC, and who does it affect?

Originally, IC was thought to be a rare disease affecting mostly post-menopausal women. Now it is clear that IC can affect any age group, and men and children as well. A recent study found that the prevalence of interstitial cystitis in the United States is over 700,000, which is 50 percent greater than previously reported and 3-fold greater than that reported in Europe (Curhan, et al). More than 90% of those affected are women. However, preliminary studies of men with nonbacterial prostatitis indicate that they actually may have IC.

Helpful References

* Erickson, DR. Interstitial cystitis: Update on etiologies and therapeutic options. Journal of Women's Health & Gender-Based Medicine. Volume 8, number 6, 1999. A summary of Dr. Erickson's review is located on the ICA’s Web site.

* Interstitial Cystitis: An Update of Current Information (Urology Supplement 5A, May 1997) Curhan GC, Speizer FE, Hunter DJ, Curham SG, and Stampfer MJ. J Urol 161:549-552, 1999.

Berger RE, Miller JE, Rothman I, Krieger JN, Muller CH. (1998) Bladder petachiae after cystoscopy and hydrodistension in men diagnosed with prostate pain. J Urol 159:83-85

Miller JE, Rothman I, Bavendam TG, Berger RE. (1995) Prostatodynia and interstitial cystitis: one and the same? Urol 45: 587-590

4. Is there a connection between IC and UTIs (urinary tract infections)?

Urine cultures of IC patients are typically negative, meaning that bacteria cannot be found. Some theorize that IC may be triggered by an initial bacterial infection, or that bacteria are somehow connected with the disease. Some IC patients have a history of recurrent UTIs prior to developing IC. However, many IC patients have no history of UTIs. No evidence of bacteria or viruses in the urine cultures or bladder biopsies of IC patients has been found.

A comprehensive study using various antibiotics to treat IC was conducted recently. This study was funded by the ICA's Pilot Research Program, and was conducted by Dr. John Warren, an infectious disease specialist at the University of Maryland, and member of the ICA’s Medical Advisory Board. The study indicated that antibiotics do not appear to be a viable treatment for IC. [Warren JW, Horne LM, Hebel JR, Marvel RP, Keay SK, Chai TC. Pilot study of sequential oral antibiotics for the treatment of interstitial cystitis. J Urol. 2000 Jun;163(6):1685-8.]

IC patients can experience a UTI in addition to suffering from IC. This will require treatment with antibiotics. Patients who do experience occasional UTIs may need further urological evaluation to seek a cause. Since UTIs can have such a negative impact on the symptoms of IC, it is important to treat the UTI as soon as it is found. To prevent UTIs, techniques such as antibiotic prophylaxis (taking low doses of a given antibiotic to prevent infection), and hormone replacement therapy (in post-menopausal women) can sometimes be helpful.

Helpful References

Warren JW. Interstitial cystitis as an infectious disease. Urol Clin North Am 1994; 21:31.

Haarala M, Jalava J, Laato M, Kilholma P, Nurmi M, Alanen A. Absence of bacterial DNA in the bladder of patients with interstitial cystitis. J Urol 1996;156:1843.

* New York City Regional IC Forum, 1999.

Dr. Robert Moldwin on IC and Pelvic Floor Dysfunction, 1999

* Bacteria & IC Workshop Transcript, by John Warren, MD and Susan Keay, MD

* Domingue GJ, Ghoniem GM. Occult infection in interstitial cystitis. In: Sant, GR, ed. Interstitial cystitis. Philadelphia: Lippincott-Raven, 1997:77.

5. Is IC progressive?

In the majority of IC patients, IC is not a progressive disease. There is little evidence to suggest that IC symptoms and characteristics of IC pain tend to worsen with time. It is thought that the earlier a diagnosis of IC is made, the better the chance of treatment response. For many IC patients, symptoms tend to wax and wane, and some IC patients experience remissions for extended periods of time. In a small percentage of patients, IC can worsen rapidly, causing the bladder to decrease in size, reducing its ability to hold a normal volume of urine.

Helpful References

Koziol JA. Epidemiology of interstitial cystitis. Urol Clin Nor Am 1994. 7- 20

The Natural History of Interstitial Cystitis: Results of Longitudinal Patient Follow-Up in the National Interstitial Cystitis Data Base (ICDB) Study. KJ Propert; C Brensinger and JR Landis; Philadelphia, PA; AJ Schaeffer, Chicago, IL; J Kusek and L Nyberg, Bethesda, MD; and the ICDB Study Group (1999 AUA Abstract Presentation).

6. What are the best treatments for IC?

Because IC symptoms vary from patient to patient, there is no single "best" treatment that will work for everyone. IC patients respond to various treatments differently. It sometimes takes a period of "trial and error" before just the right treatment or combination of treatments is found.

Self help techniques, such as diet modification, stress reduction, heat or cold packs, and low-impact exercises may be all that is necessary for improvement of IC symptoms in some patients, while others may need to combine these self-help measures with oral medications or intravesical medication (placed directly into the bladder). For more information on self-help techniques, please refer to the IC & Self-Help Brochure and the IC & Diet Brochure under the Treatment Options section of the ICA’s Web site.

Oral medications used to treat IC include Elmiron, tricyclic antidepressants such as amitriptyline and imipramine (used for their anti-pain properties), hydroxyzine, antispasmodics, muscle relaxants and pain medications.

Intravesical treatments are often tried if less conservative treatment approaches fail. Dimethyl sulfoxide (DMSO), can be instilled into the bladder alone or in combination with other agents, such as steroids or heparin. Some IC patients utilize self-catheterization with agents such as Marcaine (a local anesthetic) or heparin. Bacillus Calmette-Guerin (BCG) is an experimental intravesical therapy for IC, and is currently undergoing clinical trials. It is not yet approved by the FDA for the treatment of IC.

Other IC treatments include laser surgery for patients with Hunner's ulcers, and opioid medications for unremitting pain. Recently, sacral nerve stimulation implants, originally used to treat urinary incontinence, frequency and urgency, are under investigation for possible use in the treatment and management of IC.

Surgery is only considered when all other treatment methods have failed, and is appropriate for fewer than five percent of the IC population. Surgery is most successful with IC patients who have a very reduced bladder capacity and pain localized to their bladders only. Although some IC patients have done well with surgery, there is a risk of serious complications. Many IC patients who undergo bladder surgery to treat their IC find that they still experience symptoms of pain, and urinary urgency and frequency despite surgical intervention.

For a comprehensive list of treatment possibilities, please refer to the ICA Treatment Guidelines. You may also find the ICA Treatment & Medications Guide to be a useful resource.

It's extremely important to recognize that medications may take time to work. The best treatment strategies use a combination of therapies, and require close cooperation between the IC patient and his/her medical team.

Helpful References

Erickson, DR. Interstitial cystitis: Update on etiologies and therapeutic options. Journal of Women's Health & Gender-Based Medicine. Volume 8, number 6, 1999.

* Ratner, V, Slade, D, and Chalker, R. A Collaborative Approach to managing interstitial cystitis. Urology supplement 5A, 49:10, May 1997.

* ICA Fact Sheet Series

* Articles located under the Treatments section of the ICA's Resource Materials Guide

7. Is IC related to other diseases?

IC may be associated with certain chronic disease and pain syndromes (Alagiri, et al). Reasons for this connection remain unclear. Allergies, irritable bowel syndrome, fibromyalgia and sensitive skin were the most common conditions found in the IC population studied. However, it is thought that these associations occur in a subset of IC patients. Therefore, not all IC patients will exhibit these other conditions. The Alagiri study and other studies have also found diseases such as systemic lupus erythematosus, endometriosis and migraine to be more prevalent in the IC patient population. More research is needed in this most important area.

Helpful References

* Alagiri M, Chottiner S, Ratner V, Slade D, and Hanno PM. Interstitial cystitis: Unexplained associations with other chronic diseases and pain syndromes. Urol 49 (Supplement 5A): 52-57, 1997. This journal is available through the ICA's Resource Materials Guide.

Seeing the Forest Through the Trees: For Many IC Patients, IC is Not Just a Bladder Disease. Lucretia Perilli, ICA Medical Information Specialist. ICA Update, Vol. 15, No. 1, 2000.

* Articles listed under the Other Diseases section of the ICA's Resource Materials Guide.

Articles listed under the Related Diseases section of this Web site.

IC & Other Diseases Fact Sheet

8. Is IC hereditary?

There does appear to be a genetic or familial pattern in IC. The first study to evaluate this connection was recently conducted at the University of Maryland, under the direction of John Warren, MD, and funded by the Fishbein Family Interstitial Cystitis Research Foundation. The findings from Dr. Warren's landmark research study have been published [Warren J, Jackson T, Meyers D, Xu J. Fishbein/interstitial cystitis association (ICA) survey of interstitial cystitis among family members of ICA members: preliminary analysis. Urology. 2001 Jun;57(6 Suppl 1):126-127; Warren J, Jackson T, Meyers D, Xu J. Concordance of interstitial cystitis (IC) in identical twins: preliminary data.Urology. 2001 Jun;57(6 Suppl 1):126; Warren JW, Keay SK, Meyers D, Xu J. Concordance of interstitial cystitis in monozygotic and dizygotic twin pairs. Urology. 2001 Jun;57(6 Suppl 1):22-25]. Their findings indicate that there is a genetic component to IC. Dr. Warren and his team of researchers are continuing their investigation into this very important area. The ICA has heard from IC patients who have other blood-relatives with IC (including twins). This has generated much interest in the subject of IC and heredity within the research community.

9. How does IC affect sexual function?

Many IC patients (men and women) have problems with pain --- before, during and after sexual intercourse. This is partially due to the bladder's very close proximity to the sexual organs. Some IC patients experience pain with arousal, and women may experience pain with penetration. Patients may suffer painful symptoms for days after sexual intercourse, and some may refrain from all sexual activity because of the pain. Women with IC who also suffer from vulvar vestibulitis or other forms of vulvodynia may find intercourse painful or impossible, while some men may experience painful ejaculation, suprapubic, scrotal and/or anal pain. Also, pelvic floor dysfunction (PFD) may play a role in the pain associated with sexual intercourse in both men and women with IC.

Loss of sex drive can occur in IC patients. This can be caused by a number of things, including medications (in particular, antidepressants), fatigue and depression resulting from loss of sleep, and the anticipation of pain. Certain contraceptives may cause IC symptoms to flare. Some IC patients may have a hypersensitivity to latex condoms or to spermicides used with the diaphragm or sponge. Some may also experience pain when the diaphragm rim presses on the base of the bladder (trigone area). Sexual activity may increase the incidence of bladder infections, which can cause symptom flare, but there is no evidence that IC is a sexually transmitted disease.

Helpful References

IC & Sexuality: Communication Breakdown . Lucretia Perilli, ICA Medical Communications Specialist. ICA Update, Vol. 14, No. 4, 1999.

* Articles listed under the Sex & Pregnancy section of the ICA's Resource Materials Guide

* IC & Sexuality Brochure

10. Does IC lead to bladder cancer?

No. It is important, however, to completely exclude bladder cancer when making the diagnosis of interstitial cystitis. Your urologist will look for cancer when you undergo cystoscopy with hydrodistention to diagnose interstitial cystitis. Urine cytology (the study of cells within the urine) and bladder biopsy may also be needed to completely rule out bladder cancer.

11. I have very severe IC. Should I have my bladder removed?

Probably not. The success rates for treating IC with available bladder surgeries (augmentation cystoplasty, urinary diversion, and various pouches) have been varied and unpredictable. Research has shown that surgery should not be considered as a treatment option for most IC patients. There are potential serious surgical complications when bladder surgery is used to treat IC. Some patients actually do worse, not better, following these surgical interventions. One condition in which these types of bladder surgeries may be considered is if the patient has a markedly reduced bladder capacity.

There are, however, other surgical procedures that may be warranted. Laser surgery is being successfully used in the treatment of Hunner's ulcers. Recently, sacral nerve stimulation implants, originally used to treat urinary incontinence, frequency and urgency, are under investigation for possible use in the treatment and management of IC.

For severe, unremitting pain, long-term opioid medications may be helpful.

Helpful References

* IC & Surgical Procedures Fact Sheet

* Dr. Robert Moldwin's Surgery and IC Workshop presented at the ICA's 1997 National Meeting

Managing IC Symptoms With Neuromodulation Devices - ICA Update

IC & Pain/Four-Part Series by Lucretia Perilli, ICA Medical Information Specialist

ICA Update, Vol. 13, No. 3, 1998

ICA Update, Vol. 13, No. 4, 1998

ICA Update, Vol. 14, No. 1, 1999

ICA Update, Vol. 14, No. 2, 1999

12. When will researchers find a cure for IC?

We are at a unique time in history. For the first time, there is a keen interest in IC within the medical community. More and more scientists are pursuing research covering all aspects of IC, including epidemiology, causes, diagnostic markers, genetic links, and better treatments. More and more clinicians are recognizing IC in their patients (men, women and children), and they have more information regarding IC and treatment options available to them than ever before. With interest in IC growing at this pace, it is likely that new discoveries will be made much more rapidly than in the past.

While it is unlikely that researchers will find one single cure to help all IC patients, it is very likely that more and more patients will be helped through the development of new diagnostic techniques, new treatment options and new treatment combinations. Once the cause (or causes) of IC are clearly understood, we will be much nearer to a cure (or cures).

Helpful References

Tracking Down the Causes of IC by Lucretia Perilli, ICA Medical Information Specialist. ICA Update, March 2001.