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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About IC

Potential Causes

Treatments

InterStim

Robert Evans, MD, ICA Medical Advisory Board member, answers frequently asked questions about InterStim.

Complementary and Alternative Therapies

Pain Management

Related Conditions

Healthcare

About IC

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 healthcare provider. There are also new treatments in clinical trial 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 healthcare provider 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 healthcare providers 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 for 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). The Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network, sponsored by the National Institutes 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. But there is hope. Learn more about being intimate while having IC.

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 if 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.

What can be done to prevent the adverse effects of diagnosing IC using cystoscopy with hydrodistention under anesthesia and other invasive tests?

Having treated more than 800 IC patients, I have found that an IC diagnosis most always can be made without having to use invasive techniques such as cystoscopy with hydrodistention of the bladder under anesthesia or the Potassium Sensitivity Test, both of which can trigger even more pain. In fact, the American Urological Association (AUA) clinical guidelines for the diagnosis and treatment of IC state that cystoscopy and/or urodynamics are not necessary to diagnosis IC in most patients. The guidelines also state that the Potassium Sensitivity Test is not a useful diagnostic tool for IC. It is most common among practitioners who see and treat IC patients on a regular basis to diagnose IC by simply getting a good history of urinary frequency and urgency associated with any type of persistent pain in the pelvic region, making sure that urine cultures are negative, and ruling out other conditions such as overactive bladder or prostatitis in men. Along with this criteria, finding that the base of the bladder is significantly tender and sensitive via intra-vaginal examination in female patients, or finding that the base of the urethra in the scrotal midline is tender and sensitive in male patients may “clinch” the diagnosis of IC.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

Potential Causes

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. More studies point to a genetic pattern in IC, including a small study by ICA Pilot Research Program recipient, Dr. Kristina Allen-Brady.

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. Watch the 2013 ICA Patient Forum session, A Time for Two: Intimacy, Sexuality, and IC, and download free ICA fact sheets on being intimate when you have IC and helpful intimacy products to learn more.

Is IC autoimmune? - I heard that 30% of IC patients develop lupus.

We do not know the cause of IC and are not sure how many patients with IC have autoimmune syndromes. The early epidemiologic study that looked at this showed the percentage was tiny; however, the percentage was high compared with the rate in people who don’t have IC. There are many different reasons that a patient may present with IC and other conditions. Read more about lupus and IC.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Please elaborate on the concept of an insult in chronic pelvic pain.

Many experts in IC, endometriosis, and irritable bowel syndrome (IBS) believe that some insult probably starts the cascade of chronic pelvic pain. In IC, we believe that surgery, urinary tract infections (UTIs), and any kind of trauma to the pelvic floor may trigger the onset of symptoms. There may be some inflammatory condition that kicks off the cascade and starts this process. More research is needed to confirm these theories.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Does an abnormality in collagen contribute to pelvic floor dysfunction?

There are collagen differences related to genetics that predispose women to prolapse issues, but this is not the same condition as pelvic floor dysfunction (PFD). Here’s some additional information about PFD.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Is there a relationship between taking tetracycline long term and IC?

We do not know if there is an association between these medicines and IC. Many IC patients report having taken antibiotics for past sinus infections and/or recurrent UTIs; however, was it the recurrent infections or the antibiotics that triggered their IC? We do not yet know. It is also possible that it may be a combination of both.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Are there any connections between IC and prior use of Accutane?

At this time, we are not aware of any connections between IC and prior use of Accutane.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Do allergies play a role in aggravating IC?

Yes. Allergies cause the release histamine. In turn, histamine triggers an inflammatory response in the body. Thus, we commonly tell patients that if they tend to get significant seasonal allergies, they will commonly find that there IC symptoms will act up and flare during those seasons. This is also why anti-histamines are often used in the treatment of IC symptoms. Unlike antihistamines, IC patients with allergies should avoid decongestants (also used to treat allergies) because they can cause a further spasming of the smooth muscle of the bladder, making IC symptoms worse.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

What is the role of athletics in patients who develop IC?

Just as there is a growing concern about concussions in young athletes, it is clear that there can be cumulative injury to the pelvic region due to playing sports. These injuries often occur repeatedly as these young athletes are told to “stretch it out”, or “play through the pain”. This type of inappropriate guidance is more likely at lower levels of competition due to the lack of “smart” training that generally occurs at the college level. There is growing knowledge that some of the disorders of the pelvic organs start to develop in young people as early as grade school. It is important to help young athletes to gain skills and knowledge to prevent and treat these injuries so they do not develop into chronic injuries later on.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

Are ureaplasma and mycoplasma connected to IC?

These two organisms are typically not found in the urine. There seems to be no direct connection between these unusual organisms and IC.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

Treatments

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 its 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 (generic: 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 the medical literature for palmitoylethanolamide.

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 AUA Diagnosis and Treatment Guidelines for IC. Learn about self-help (diet, bladder retraining, and physical therapy), 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/he 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.

What do you find effective for frequency?

A combination of things, not just one thing, is the best approach to control the urge “to go” often. InterStim is effective for some, pelvic physical therapy works others, and sometimes, medicines known as anticholinergics help once your IC is controlled. For more on InterStim, go to the InterStim section of the FAQ page.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

How are bladder spasms treated? Does InterStim have any value for spasms?

There are different reasons for bladder spasms. Talk with your doctor to learn what treatment options may be best for you. Bladder spasms can be treated with medications, sometimes with diet, and sometimes InterStim helps control them.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

What is the best cocktail for bladder instillation?

There are no studies demonstrating that one bladder instillation is better than another. Your doctor and you need to figure out which instillation works best for you. Some use bupivacaine (Marcaine) and heparin. Heparin is an anti-inflammatory and Marcaine is an anesthetic. Others use Elmiron or lidocaine instillations. Often a combination of medicines called a bladder cocktail is the best option.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Do you have InterStim patients who are still in chronic pain?

InterStim has not been approved for pain but for voiding dysfunction. Pain persists for some IC patients who have these implants. Patients with InterStim may also need to see a physical therapist, stick to their IC diet, and figure out strategies that help them live their life. This means finding what hurts you and what helps you. This varies from person to person. It is a discovery!

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

For me, Lyrica causes severe swelling and weight gain. Do other patients experience these side effects and should I continue to take it?

Lyrica is a medicine that is prescribed for pain. If it is helping with your pain, then you have to decide if the side effects are worth the benefit. If you get only side effects and no benefit after several weeks on Lyrica, talk with your doctor to decide if continuing to take this medication makes sense.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

I had a hysterectomy for endometriosis and then developed pain. I am in a pain cycle that is daily. I have limited my diet to a few foods. IC is dominating my everyday life. I cannot take Elmiron. I do self instillations, and I have retention with Elavil.

You would do well visiting a pelvic pain clinic with pelvic physical therapy/trigger point injections and potentially other treatments added. A multidisciplinary and multimodal (combination of treatments) approach may be best for you.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

I have had IC for 16 years and also suffer from generalized anxiety/social anxiety. My doctors have not been able to find a medication to treat these conditions because everything flares my IC.

This is where the multidisciplinary approach is vital. There needs to be medication and cognitive therapy, best done by someone who is an expert in these health issues. Some IC healthcare teams include a psychiatric nurse practitioner. Your IC doctor can work on the IC and the psychiatric nurse practitioner on the anxiety. Your situation is not uncommon. Most patients who have long-term health problems combat depression and anxiety.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

I am having frequency 45 times a day and vulvar pain. Which treatment choice have you seen making the most improvement? I also have cold chills as my pain goes past a 7.

Sometimes, patients with this much pain need some five to seven different treatments over the course of several months to break the cycle such as a combination of instillations, Elmiron, and InterStim. You may also need cognitive therapy. You may also need an antidepressant.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

What are treatments to increase bladder capacity?

The first step is to figure out why your bladder capacity is low. If your bladder is fibrotic, the bladder capacity can be expanded. If your bladder is overactive (requires emptying every 100 to 150 ccs or 3 to 4 ounces), urodynamic studies can determine if it is the pelvic floor muscles that need treatment and if instillations with a local anesthetic can be helpful. For some patients with low bladder capacity, physical therapy is helpful.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Does pudendal nerve dysfunction occur in IC?

Some IC patients have pudendal nerve dysfunction. The pudendal nerve is probably related to the chronic inflammatory pathways in the pelvis. However, surgery on the pudendal nerve is not the answer for everyone. For many patients with this dysfunction, trigger point injections or CT guided injections can be helpful.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

What are the upper limits of safety with Botox injections into the pelvic floor? What is the effectiveness and success rate?

Currently Botox is experimental. Treatments typically wear off in six months. Though there are many protocols for injection into the bladder, there is no standard dosage. Most of the literature suggests utilizing two ampoules. However, we have to standardize this over time. Not all IC patients benefit. Some go into urinary retention and are not pleased with the results. It is case by case.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

It has been recommended to remove our 23 year-old son’s bladder. What are your thoughts on this?

Surgery for IC is a last resort option. This is a big intervention and can be very traumatic for a patient.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Do you think cystoscopy with distention helps with a flare?

Yes in some cases, cystoscopy with distention under anesthesia can help with a flare.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Is it safe to take three teaspoons of baking soda a day with meals for IC symptom relief?

Yes, it is safe to take baking soda daily to help de-acidify or alkalize the body. This is good for IC, as it is good for any chronic pain or inflammatory issue.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

Can IC be treated with antibiotics?

No. Antibiotics are useless unless there is a bacterial infection present at the time. This is why it is so important to ask your practitioner to order a culture on the urine before starting any type of treatment. The urine test using a “dipstick” can easily mislead by showing red and white cells, protein, and other abnormalities that occur commonly with IC. It does take at least 48 hours to get a culture report, so it is generally alright for your practitioner to treat your symptoms with an antibiotic during those first 2 days, if there is a strong suspicion of a UTI. The antibiotic can then be stopped if the urine culture is negative.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

Tanezumab seemed promising for chronic widespread nerve pain, is there any movement back towards that approach?

Tanezumab is a part of a class of chemicals that block nerve growth factor (NGF)—a factor necessary for pain to be transmitted and experienced. In 2010, the Food and Drug Administration (FDA) halted the clinical trials that were in progress because of severe unwanted side effects in osteoarthritis patients. The FDA just lifted the ban on the research so stay tuned for drugs of this nature to help alleviate neuropathic pain.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

How well is Botox working for IC patients?

I do use Botox into the pelvic floor for those female patients that, following all other treatments, still have a particularly stubborn pelvic floor. I have found that this commonly helps alleviate some of the rectal and pelvic floor clenching type pain and tightness, but the results are hard to quantify. Most patients do feel improvement for variable lengths of time. One downside is expense. Not all insurances cover the Botox itself.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

How often and long can I use pyridium for urethral pain?

Pyridium should usually only be used 3-4 days at a time. There is a “blue” medication called Uribel that is similar in its effectiveness but can safely be used on a more continuous basis.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

How long can I expect to be on Elmiron to treat IC?

One of several downsides to Elmiron is that it takes 3-6 months to be effective, and it actually continues to become more effective up to 36 months of use. This is why I generally advise patients to expect to be on the medication for at least 18-24 months.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

Do you ever prescribe your patients Elmiron instillation via bladder catheterization?

Yes. Bladder instillations in our office usually include the use of our patient’s own Elmiron capsules. We use the contents of one capsule per treatment and do weekly treatments for about two months. Later, many patients are treated with this instillation during an IC flare.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

InterStim

Robert Evans, MD, ICA Medical Advisory Board member, answers frequently asked questions about InterStim.

Will InterStim help with the pain of IC?

With InterStim, you are really affecting the nerves that cause increased urinary frequency. You should not expect that it will have an effect on your pain. Although some patients do get pain relief, further research is needed to assess this device's effects on the pain of IC.

Will I get immediate relief of my symptoms?

Some patients may experience immediate relief. Others may require reprogramming of the permanent implant, up to several times, in order to achieve optimal results.

How long can the test stimulator be left in place?

It can be left in place for about a week. After that length of time, the wires move themselves out, the tape tends to peel off, and effectiveness is lost.

Will my insurance cover InterStim?

Medtronic has been very helpful in getting the stimulators pre-approved. My policy is that we do not do a test stimulation until we get approval to test and pre-approval to use the permanent implant from the insurance company or Medicare.

What kinds of physical activity can you do after InterStim implantation?

For the first week or so, the patient needs to keep the area dry. After about three weeks, when the incision is fully healed, there is no limitation of activity.

How long does the InterStim battery last?

Right now it is felt that the neuromodulator should work for seven to ten years. The company makes a nearly identical pulse generator for pacemakers. When the battery needs to be replaced, your physician can make a small incision and put a new battery in. This procedure takes approximately 15 to 20 minutes.

Is InterStim implanted under general anesthesia?

Yes. The permanent device is implanted under general anesthesia. However, for the test implant, the patient has to be awake so that they can let their doctor know if their bladder symptoms are responding to the test stimulator.

Complementary and Alternative Therapies

How well does acupuncture work for IC?

IC is not a condition that has one cause and one treatment. Some patients get great benefit with acupuncture. Others do better with medications or hypnosis or homeopathy. Many patients do best with a combination of treatments. However, no two patients are alike.

To learn if complementary and alternative treatments might work for you, find a clinician who is certified in acupuncture. Check out www.medicalacupuncture.org and www.nccaom.org.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Do you recommend hypnosis? How well has it worked with frequency or pain?

Hypnotherapy can be very helpful with pain, and you can learn to hypnotize yourself and learn to control your pain on your own. However, there is not one approach that is the solution for everybody. If you go on the webpage of the American Society of Clinical Hypnosis (ASCH) you can find a practitioner close to you.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

What happens in physical therapy?

If you have ever had low back muscle spasms, neck spasms, a muscle problem, you know that muscle needs to be lengthened and the spasm worked out. This requires kneading, massage, palpation, trigger point palpation, and other techniques. The only difference between the pelvic muscles and other muscles is that these muscles are more difficult to reach.

Look for a physical therapist who is specially trained to treat IC and chronic pelvic pain. Contact the American Physical Therapy Association, www.womenshealthapta.org/plp/index.cfm, 800-999-APTA, ext 3229.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Why do we do pelvic floor muscle massage after injections? In other muscles we wait two days.

Trigger point injections and physical therapy are done immediately after the injection, because at this point the muscle is ready to get trained. One risk in waiting two days is that the effect of the injection will be reduced because the muscle is not relaxed.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Is it a good idea to experiment with homeopathic remedies? Can they be dangerous or unsafe?

Some homeopathic remedies are safe and appear to help. Others are safe with questionable effectiveness. Others can have adverse side effects. It’s a good idea to discuss all therapies that you try with your doctor. Read more about IC and complementary and alternative medicines.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Pain Management

Is there a role for chronic opioids in IC pain management?

The best approach is a combination of treatments. Some people do well without opioid medicines, but others require more pain management. It is your choice. There may be times that you need pain medication.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Regarding conscious pain mapping: If it is bowel related, how can you tell when doing the mapping? Strictly by touching the bowel?

Pain mapping is done by the doctor touching and grasping the intra-abdominal viscera and peritoneum in an attempt to reproduce the patient's pain. This special laparoscopy can also be done in a conscious patient, who is then usually able to interact with the surgeon to help identify the source of the pain.

Long-term effectiveness and diagnostic accuracy of conscious pain mapping has not yet been established. If mapping bowel pain, the determination is made by strictly touching the bowel.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

Having suffered chronic pain for over 40 years and after having hundreds of tests and missed diagnoses, how do I live with all the overall body pain?

Finding a solution for 40 years of chronic pain may take a while. Some pain may always persist, and pain meds have the unpleasant side effects of making you tired and weak.

Look into meditation and find routines that you can do on your own. Sometimes little things like listening to certain songs, writing letters to friends to distract from pain, being active in support groups, and helping others. Self hypnosis or meditation or prayer may some relief. Finding a good counselor to help find peace inside you could help.

Many little things that help can make a difference, but it is not going to happen overnight.

This question was answered in the ICA webinar, Q & A: Finding Better Relief, featuring urogynecologist Barry Jarnagin, MD, and urologist Ragi Doggweiler, MD. View the webinar to learn more about this topic.

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.

Related Conditions

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.

I was diagnosed with extremely tight pelvic muscles. Internal physical therapy only causes more pain. Do you have any suggestions?

When appropriate physical therapy applied by a qualified and well-trained pelvic floor therapist does not help the pelvic pain or even makes the pain worse, there could be two reasons. As in all manual therapy for “tight muscles”, there is a lag time in the early days, weeks and even months of therapy before the “muscle memory” can be finally calmed down. Remember, it often took years for those muscles to be in constant spasm. Therefore, it will take time for them to relax, and they will often “fight back” for periods of time as a good therapist works with you. There is a second reason why good physical therapy may cause pain. If pain triggers due to pudendal neuralgia, irritable bowel syndrome, or other associated conditions are not being treated adequately, physical therapy for IC will not be enough. Your physical therapist cannot work alone with these issues. A team of healthcare providers is needed to resolve these issues.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

I have been diagnosed with chronic prostatitis. I had prostate removed but still have the symptoms of chronic prostatitis. Could I have IC?

Absolutely yes. So many men are misdiagnosed with chronic prostatitis. Most of the male patients in our pelvic pain program have gone through this experience as well.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

Is vaginal atrophy a component of IC?

No. Post-menopausal vaginal thinning and dryness—either from natural menopause or surgical menopause (removal of ovaries before natural menopause)–has nothing directly to do with IC. However, sexual dryness is a completely different physiology in pre-menopausal women. Any pain associated with sexual intimacy at any age will tend to shut off the normal arousal type lubrication that occurs when there is a pleasure sensation. Therefore, the lack of lubrication in women with IC is extremely common due to the pain associated with penetration intercourse.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.

Healthcare

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.

Is taking potassium medication for high blood pressure harmful to the bladder of IC patients?

No. Most people take potassium supplements if they have hypertension because they are likely to be on types of diuretics that lower the normal potassium level in the body as a whole. This potassium level is extremely important to keep in the normal range for many reasons related to total body health and should not be a problem at all for the bladder in IC patients.

This question was answered in the ICA webinar, IC’s Role in CAPPS, featuring Dr. Robert Echenberg. View the webinar to learn more about this topic.



Revised August 19, 2013