Answers to your questions about interstitial cystitis

About IC

Is the chronic pelvic pain I suffer from caused by IC?

Chronic pelvic pain may be a symptom of a number of different conditions. That's why it may be hard for your doctor to diagnose the cause of your pain and to determine an effective treatment. However, by helping your doctor identify the cause of your pelvic pain, you can help him or her make an accurate diagnosis. Be sure to tell your doctor if you feel the urge to urinate frequently, if you have pain that is decreased by urinating, or if you often wake up in the middle of the night to urinate. These symptoms may be signs of interstitial cystitis (IC) — a long-term medical condition where the bladder wall can become irritated and inflamed. Your symptoms may come and go, and may occur all at once or each at different times.

What causes IC?

While the exact cause, or causes, is unknown, many experts believe that, in IC patients, the mucous layer that lines and protects the inside of the bladder is too thin — or missing altogether. This condition allows chemicals in the urine to irritate the bladder wall. Some evidence points to irritating substances in the urine or the release of inflammatory substances. Other evidence suggests that IC is caused by the body's own natural defense system turning on itself. IC associated with chronic pelvic pain may also be made worse by allergies. In some people, symptoms may get worse when certain foods are eaten.

Who gets IC?

Both men and women get IC. The exact number of people with IC is unknown, but current estimates suggest that there may be as many as nine million women in the US who suffer from chronic pelvic pain.

How common is IC?

Although the majority of people diagnosed with IC are women, men can also develop IC. Recent studies show that IC occurs more often in men than was previously recognized. Approximately 25% of patients are under 30 years old when they first develop symptoms, and the mean age at diagnosis is 44 years.

Why is IC so hard to diagnose?

One of the reasons IC is so hard to diagnose is because the pain associated with IC can be felt in various locations throughout your pelvis, so it can be easily confused with gynecologic or urologic conditions.

In women, IC pain may be felt in the urethra, the vagina, the area above the pubic bone, the inside of the thighs, the lower abdomen, the lower back, the groin area, or any combination of these areas. Other conditions that can produce the same or similar symptoms include endometriosis, urinary tract infection (though most people with IC have negative urine cultures) or vaginal infection.

In men, IC pain may be felt in the penis, testes and/or scrotum, the area above the pubic bone, the lower abdomen, the lower back and the groin area or any combination of these areas. As with women, these different pain locations can complicate the diagnosis. IC may be labeled recurrent urinary tract infection, “urgency-frequency” syndrome or “urethral syndrome,” though most people with IC have negative urine cultures. Men who may have IC are sometimes diagnosed as having chronic nonbacterial prostatitis, benign prostatic hypertrophy (BPH) or epididymitis.

How can IC be identified?

The IC Self-Screener may help your doctor screen for IC. This tool measures symptoms associated with IC — such as the urge to urinate, frequent trips to the bathroom to urinate, pain, and pain associated with sexual intercourse — and the extent to which you may be affected by these symptoms. The questionnaire is designed to encourage a frank and comprehensive conversation between you and your doctor. A thorough discussion is a valuable part of making an early diagnosis.

Are there tests for IC?

Although there is no specific test for IC, some doctors may perform a cystoscopy. Many doctors will screen for IC using the IC Self-Screener before having a cystoscopy performed.

What is a cystoscopy?

A cystoscopy (sis-TO-skoh-pee) is a procedure performed by a urologist to see the interior lining of the bladder. To perform a cystoscopy, your urologist may fill your bladder with water, to expand it like a balloon. Next, your urologist will insert a cystoscope (a thin, lighted tube that has a tiny camera attached to the end) into your urethra — the canal that carries urine from the bladder to the outside of the body. Once the tube is inserted, your urologist can view your bladder lining to see if there are any signs of irritation.

While a cystoscopy may be a helpful screening method for your urologist, it does not always find bladder irritation. For some patients, the sores on the bladder lining may not be visible and it can be very difficult to definitively diagnose IC. The IC Self-Screener is a simple, noninvasive screening tool that doctors and patients can feel comfortable using. The questions are very specific, and pinpoint what the patient may be feeling.

How do I know if I have IC?

You may suspect you have IC if:

You feel unexplained pain or pressure in the urethra, the vagina, the area above the pubic bone, the inside of the thighs, the lower abdomen, the lower back, the groin area, or any combination of these areas.
You feel pain during or after sexual intercourse.
You have frequent, sometimes painful, urination. (Normally, people urinate an average of 6 to 7 times per day. Patients with IC urinate an average of 16 times per day, and some urinate as often as 60 times per day.)
You wake up one or more times at night to urinate.
You feel the urge to urinate, sometimes even after you've emptied your bladder.
You have unresolved symptoms of a urinary tract infection (UTI) that have not responded to antibiotic therapy.
Your symptoms come and go — flare-ups may be associated with menstruation, certain foods, allergies and stress.

If you have one or more of these symptoms, you should speak to a doctor to evaluate you for possible IC.

Can IC be treated?

Yes, IC can be treated. There are a few treatments available — including ELMIRON^®. It's important to note that ELMIRON^® is the only oral medication approved by the US Food and Drug Administration (FDA) for the relief of bladder pain or discomfort associated with IC. Other therapies may include bladder analgesics, and solutions to fill the bladder, such as dimethyl sulfoxide (DMSO) or heparin.

The most common side effects in patients taking ELMIRON^® were blood in stool, diarrhea, nausea, hair loss, headache, rash, upset stomach, abdominal pain, liver function abnormalities and dizziness. When side effects did occur, they were generally mild and usually did not interfere with continuing treatment.

Please read the ELMIRON^® Important Safety Information.

Will I get better?

With the help of your doctor you can find symptom improvement. Success may vary from patient to patient. Some people eventually become symptom-free. Others may feel varying degrees of improvement. Only a small number of patients have little or no response to available treatments. Without treatment, many people experience flare-ups and remissions. In women, these often occur during hormonal fluctuations.

Is it normal to feel sluggish, foggy, and not my usual self with IC?

Since IC may cause you to wake up often throughout the night to urinate, getting a good night's sleep may be rare. It's also common for people to feel depressed.

Can I give IC to my partner?

No. IC is not contagious. No one passed IC on to you, and you can't pass it on to anyone else.

Will IC turn into cancer?

There is no evidence that IC is related to cancer.

Sex hurts. What can I do?

When sex hurts, relationships may suffer. Even an understanding partner may become frustrated. Therefore, you may wish to speak with your doctor about the pain you experience during sex. Here are some measures to discuss with your doctor to see if they are right for you:

Washing with a warm rinse after sex.
Using plenty of lubrication (such as K-Y^® brand lubricating liquid or jelly).
Using a soothing gel or ice pack on the external genitalia.

Where can I get more information or support?

The organizations listed on this site have more information regarding IC. Newsletters, support groups, telephone support groups and other resources are all available. Take time to contact some of these associations to learn more about IC.

About ELMIRON^®

How can ELMIRON^® help IC?

ELMIRON^® is the only oral medication approved by the FDA for treating the pain or discomfort of interstitial cystitis (IC). Clinical studies have demonstrated ELMIRON^® to be both effective and well tolerated.

What should I expect?

ELMIRON^® has helped many people with IC, and it may help you. While some patients may experience symptom relief in as little as 4 weeks, it may take at least 3 months for ELMIRON^® to work. The good news is the longer you take ELMIRON^®, the better it may work. Therefore, it is important to continue with your treatment as directed by your doctor. Keep in mind that symptom improvement will be gradual. If you don't experience any symptom improvement within 6 months, talk to your doctor.

Over the long term, in patients who find relief with ELMIRON^®, the benefits are usually maintained with continued ELMIRON^® therapy.

Learn about using ELMIRON^®.

How do I take ELMIRON^®?

The recommended dosage of ELMIRON^® is one capsule, 3 times a day on an empty stomach (one hour before or two hours after meals), or as directed by your doctor.

What are the possible side effects of ELMIRON^®?

ELMIRON^® has been shown to be generally well tolerated. When side effects did occur, they were generally mild and usually did not interfere with continuing treatment. The most common side effects were blood in stool, diarrhea, nausea, hair loss, headache, rash, upset stomach, abdominal pain, liver function abnormalities and dizziness. Hair loss, when it occurred, was almost always limited to a single area of the scalp, and it grew back when ELMIRON^® was discontinued.

ELMIRON^® is a weak anticoagulant (blood thinner), which may increase bleeding. Call your doctor if you will be undergoing surgery or will begin taking anticoagulant therapy, such as warfarin, heparin or high doses of aspirin; or anti-inflammatory drugs, such as ibuprofen.

Before taking ELMIRON^®, please also see the Full Prescribing Information.

What else can I do to manage my IC?

Many people living with IC have found success with changes in diet and lifestyle during their ELMIRON^® treatment. These include:

Relaxation and breathing techniques.
Bladder retraining (lengthening the time between bathroom visits).
Monitoring nutrition.
Gentle exercise.

I don't have prescription drug coverage. How can I make ELMIRON^® an affordable option?

If you don't have prescription drug coverage, you may be eligible for an assistance program that could provide discounted or free prescriptions. Learn more at www.access2wellness.com. Access2wellness™ provides access to more than 1,000 free and discounted prescription medications for uninsured and underinsured individuals who qualify.