Frequently Asked Questions
ICA staff and volunteers answer questions from patients, healthcare providers, researchers and the public. Below are some of the most commonly asked questions about interstitial cystitis (IC).
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Is there a cure for IC?
There is currently no cure for IC. However, IC is more manageable than ever before. Download a copy of the IC treatment guidelines. Print it out and share it with your doctor. There are also new treatments in clinical trials that are giving IC patients hope. The ICA Pilot Research Program provides researchers with the vital initial funding they need to get their IC projects "off the ground" and give people affected by IC hope that there will soon be a world free of IC pain and symptoms. The "Imagine No IC” campaign raises money to fund the research program.
How often should I be rechecked after being diagnosed with IC?
There is no standard protocol for how often an IC patient gets rechecked by their doctor after being diagnosed with IC. You need to work closely with your healthcare team to get symptoms in control. This may mean seeing your doctor or healthcare provider more frequently at first. Also you need to check in with your healthcare provider if your symptoms flare, you have new or worsening symptoms, or there is blood in your urine. In addition, if your symptoms are not responding to therapy you’ll need to see your doctor more often. And, many doctors like to see you on a regular basis, especially if you are on medication. Similar to the management of other chronic conditions, how often you need to go to follow up appointments depends on your specific treatment plan and how you feel.
Is low back pain common with IC?
Low back pain is a common complaint for many people with IC. It is recognized as a symptom of pelvic floor dysfunction (PFD). Low back muscles in spasm can strain muscles in the pelvic area contributing to pain in the pelvic area. If your back is hurting, talk with your healthcare provider. Your primary care provider can decide if a diagnostic workup or other testing is required to rule out other reasons for the pain.
Is blood in the urine typical of IC?
Many IC patients notice blood in their urine and wonder if this is related to IC. It is not unusual for some blood to be found in urine of anyone, including those without IC or other health problems. That said, call your doctor if you notice blood in your urine, it’s important to get checked. It may be nothing or it may be a sign of infection or other medical problems such as kidney stones or cancer.
What is IC belly?
A swelling of the belly is a frequent complaint among IC patients and seems to be more common during periods of greater discomfort and pain. If you have swelling in your stomach or pelvic area, talk with your healthcare provider. Get checked to make sure that the swelling is not a sign of infection or some other medical problem. Ask about your treatment options to better control IC symptoms.
Are there different types of IC?
Yes. There are two types of IC: (1) Non-ulcerative IC and (2) Ulcerative IC (Hunner's patches or ulcers). Read more about the different types of IC.
The Multidisciplinary Approach to the Study of Pelvic Pain Research Network, sponsored by the National Insitutes of Health (NIH), is further investigating IC and the different subtypes of the condition.
How does IC affect sexual function?
Many IC patients (men and women) have problems with pain -- before, during and after sexual intercourse. Loss of sex drive can also occur in IC patients. Learn more about IC and intimacy.
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.
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 help diagnose IC. Urine cytology (the study of cells within the urine) and bladder biopsy may also be needed to completely rule out bladder cancer.
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 Research Foundation. The 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.
Is IC a sexually transmitted disease/infection (STD/STI)?
IC is not contagious and cannot be passed from one partner to another through intimate sexual contact.
Like other chronic illnesses, IC can pose challenges to sexuality and relationships. Read more about intimacy and IC. Also download free fact sheets on being intimate when you have IC and helpful intimacy products.
Is low dose naltrexone used to treat IC?
LDN stands for low dose naltrexone. Naltrexone is an opioid blocker used in treated opioid dependence, but in very low doses, the blocker seems to encourage the body to produce it's own painkilling endorphins and enkephalins. A pilot trial of low-dose naltrexone in fibromyalgia showed positive effects. Some research also indicates that it may be useful in autoimmune conditions and inflammatory disease. The science isn't there yet on whether it is a useful treatment for IC. Some pain management doctors are having IC patients try the therapy; naltrexone has to be compounded to get the low dose.
Is Normast used to treat IC?
Normast (palmitoylethanolamide) is a marijuana-like compound that our bodies make internally. There is a lot of hopeful research. Some pelvic pain specialist may be trying it with IC patients. Please check with your doctor and ask if this medication might be a good option for you. Before your doctor’s appointment, take some time to pull together information for your doctor. Go to www.pubmed.gov and search for medical literature about palmitoylethanolamide.
What do I do if my IC doctor will not treat IC pain?
As government regulations tighten around prescription pain medicines, it can be challenging to find a physician to prescribe pain medicines. There are many medications and techniques to treat pain including over-the-counter medicines, non-narcotic pain medicines, topical medicines, and narcotic pain medicines such as opioids. If opioids are required for your pain and your IC doctor is not comfortable prescribing them, ask for a referral to a pain management specialist who has interest and expertise in this treatment area.
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. The best treatment strategies use a combination of therapies. It is also extremely important to recognize that medicines may take time to work.
Read an overview of treatment options and review the ICA Treatment Guidelines. Learn about self-help (diet, bladder retraining, and over-the-counter products), oral medicines, bladder instillations, electrical nerve stimulation, and surgery.
Does drinking less water help?
Some IC patients try to reduce their water intake so they don’t have to pee as much. However, you need to drink enough water to keep your urine diluted because concentrated urine can increase your IC pain. Not drinking enough water can also cause dehydration, which puts you at higher risk for constipation, urinary tract infections, and other health problems. Eight glasses a day of water is recommended. However, talk with your IC healthcare provider about how much water you need to drink. Some IC experts recommend keeping a bottle of water with you and taking a sip every 5 to 10 minutes. This allows a slow drip on the bladder which can be less irritating to IC symptoms. Read more about IC and water on Diet Bytes.
What is a rescue solution?
Rescue solutions, as the name implies, are bladder instillations used to soothe and quickly reduce bladder pain. Doctors first used the term to refer to anesthetic instillations given right after potassium sensitivity tests were administered; the rescue solutions were used to ease the pain the test can cause. The term rescue solution has also come to be used to mean the anesthetic instillations that "rescue" you from an IC flare. IC experts are also starting to consider using anesthetic instillations, not just to ease flares, but also for long-lasting symptom control. That's a change in mindset from "rescue," and research will tell us whether this new approach will be helpful. These solutions contain an anesthetic and, often, other added ingredients, such as an alkalinizer, bladder coating agents such as heparin or pentosan polysulfate (Elmiron), steroids, and antibiotics.
How can I avoid flare-ups of my IC?
Though it may not be possible to hold off all IC flares, there are self-help techniques to manage flares. Learn to recognize what triggers your flares. Some common triggers include diet, medicines (including certain vitamins and supplements), exercise, sexual intimacy, hormone fluctuations, stress, certain modes of transportation or long trips, and even tight clothing. Learn more:
Why am I being prescribed antidepressants for my IC?
When a healthcare provider prescribes an antidepressant to treat your IC, she is using them for their effects on specific IC symptoms such as urinary urgency, frequency, nighttime voiding, and pelvic pain, not for their antidepressant effects. Antidepressants have long been used to treat many chronic pain conditions, including IC. Learn more about treating IC with antidepressants.
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. Read more about IC and surgery.
Is there a connection between IC and UTIs?
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.
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.
Flu Shot: Is it okay to get a flu shot?
We reached out to two doctors who are both on the ICA Medical Advisory Board and infectious disease specialists. Based on their experience, at this time, there is no reason that people with IC should NOT get the flu shot or swine flu vaccination. However, a vaccine, like any medicine, may have side effects including allergic reactions. Before you get a flu shot or other vaccine, check with your healthcare provider. Ask if there are any special considerations given your health status.
Shingles Vaccine: Is it Okay for IC Patients?
Interstitial cystitis (IC) doctors and healthcare providers have no data to know whether there might be any problem specifically for IC patients getting the shingles vaccine. However, the shingles vaccine is a live virus vaccine, and therefore has contraindications for people on immunosuppressive drugs (such as steroids, antibody therapy for arthritis, and chemotherapy). Also, IC patients with allergies to components of the shingles vaccine may be advised to not get a shingles shot. In any case, because the shingles vaccine is a live virus vaccine, it shouldn't be given within 4 weeks of receiving any other live virus vaccine. Before getting a shingles vaccine, check with your doctor. Go over all of your medicines and contraindications for the shingles vaccine.
Does Medicare pay for a bedside commode?
IC symptoms of urgency and frequency may require frequent nighttime bathroom breaks. We went to the Medicare website to find out if this national health insurance program for seniors covers the cost of a bedside commode for IC patients. Here’s what we found: “Medicare covers medically necessary commode chairs…In order to qualify, the doctor must write a prescription and document your need in your medical record. Medicare requirements are different for each type of commode chair…If you receive your Medicare benefit through a Medicare Advantage or MediGap plan, call and ask how to qualify for a commode chair. Regardless of your coverage, a supplier may be able to answer questions about qualifying for the equipment. You may rent or purchase commode chairs. Your cost will depend on which type of Medicare coverage you receive.”
I recently changed doctors and my new doctor says that I do not have IC. How is this possible?
There is no definitive diagnostic test for IC. Hydrodistention, while useful in the diagnosis, misses IC approximately 10% of the time. To diagnose IC, doctors evaluate symptoms, perform tests to rule out other conditions, and provide a diagnosis of IC based on symptoms and expert judgement. If you have symptoms of IC and no other bladder problems (no stones, acute infection, etc.), a diagnosis of IC can be made with or without performing a cystoscopy with hydrodistention. Also, if you have been diagnosed with IC via hydrodistention, there is no need to have repeated hydrodistentions done unless you and your doctor determine that they help your IC symptoms.
There are a few steps you may want to take:
1. Ask you current doctor to treat your symptoms. Printing out the list of treatment options from the ICA website and giving it to your doctor may help spark the discussion about potential therapies to treat your symptoms.
2. Send a written request to your previous doctor, the one who made the diagnosis, and ask to have your records sent to your new provider.
3. Let us put you in touch with healthcare providers in your area who treat IC. Complete the Healthcare Provider Registry request form.
Is it safe for a man with IC to get a vasectomy?
Vasectomy, a surgical procedure that stops the release of sperm when a man ejaculates, is considered a minor procedure for most patients. However, it can be painful for a man with IC. Ask your surgeon and IC healthcare provider to discuss your case before you have a vasectomy. Find out about the potential risks given your IC and possible approaches for reducing these risks. If you can handle a scrotal exam, a vasectomy should not be a problem. Though unusual, if complications arise with your vasectomy, you may have unique difficulties associated with your IC symptoms.
Does a colonoscopy aggravate IC symptoms?
Colonoscopies are important preventive health procedures. Unfortunately, the procedure can cause discomfort and for IC patients this may mean that symptoms flare for a few days afterwards (there is cross talking between bowel and bladder). Before you have a colonoscopy, get ready with your flare busters. Talk with your doctor about strategies to reduce flaring. Check with your physical therapist to see if they can help you manage some of the side effects of the colonoscopy procedure.
Colonoscopy Prep: You Want Me to Drink How Much?
We hear from many patients about the required preparation for colonoscopy, an exam of the colon and rectum that’s recommended for everyone, starting at age 50, to screen for colon cancer. Preparation for a colonoscopy requires that all solids be emptied from your gastrointestinal tract. This is usually done by drinking a large amount (two to four liters) of a laxative that loosens stool and increases bowel movements.
Some laxatives, such as Golytely or MoviPrep, require drinking a large amount of liquid. Does drinking all that liquid pose a problem for IC patients? Not really, says many members of the ICA’s Medical Advisory Board. Although the process of clearing the bowel will cause some discomfort, the volume you have to drink shouldn’t increase your frequency because the liquid does not go into the bladder but rather into the bowel. Most IC patients undergo bowel prep for colonoscopy without a worsening of IC symptoms.
Ask your healthcare provider which product is best for you.
For more information about colonoscopy, check out the National Institutes of Health website.
Revised October 26, 2012