AUA Guidelines Offers a Six Step Treatment Plan
In 2011, the American Urology Association (AUA) released comprehensive guidelines to assist in the diagnosis and treatment of interstitial cystitis / bladder pain syndrome (IC/BPS).
Improving quality of life is the first goal of therapy. As various treatments are considered, the patient and physician should consider the risk of side effects and adverse events.
As a rule, AUA suggests that treatment should begin with generally safe “conservative” therapies, such as oral medications and simple bladder instillations. If no improvement occurs, “less conservative” treatments that have more risk of side effects and adverse events can be explored, such as neuromodulation and Botox.
Surgery is rarely utilized and only under specific circumstances because it is irreversible. They also provide a list of treatments no longer recommended.
Please print out this document to review their recommendations and also share it with your medical care providers so that they are aware of the must current treatment practices for IC!
A Multi-Modal Approach To Therapy
Most urologists and IC clinics utilize a multi-modal approach to therapy. This means that rather than use just one therapy at a time, physicians will suggest using two or more to fight your different symptoms, often customized for each individual patient. Thus, patients who have more bladder irritation or who react strongly to a potassium sensitivity test may be prescribed a bladder coating (Elmiron, Rescue Instillation) to protect the bladder wall and replace the GAG layer. A simple antihistamine (i.e. Vistaril, Atarax), particularly for patients with a history of allergies, may help fight inflammation and improve sleep quality. A low dose antidepressant (i.e. Elavil) when used, daily, can help calm the irritated nerves in the bladder and, for some patients, reduce pain. Patients struggling with bladder spasms may use an antispasmodic (i.e. Ditropan, Flexeril) to help calm the bladder. Physical therapy is often required for patients with pelvic floor dysfunction.
The current trend in therapy in the USA is to try the less invasive therapies (i.e. oral medications, self-help, IC diet) first before attempting the more invasive and, in some cases, controversial therapies, such as DMSO and Interstim. If, after a period of time, patients have not improved, more testing and treatments may be suggested.
Finding an IC Specialist - They each have unique point of views
Physicians frequently have their own unique approach to treat IC based upon their specialty, experience levels. professional and research affiliations.
(1) Non-urologists (i.e. family practitioners, gynecologists, etc.) tend to recommend the only FDA approved treatments for IC (Elmiron and DMSO). They often don't have the depth of experience to see how other therapies, such as an anthistamine, can help. If you are working with a physician who isn't aware of other therapies, we suggest that you print out a CME course on IC for them, written specifically to educate physicians and nurses. We carry several on our website in our CME Resource Center.
(2) Urologists who conduct research or clinical trials may suggest that you participate in their research studies. While participating in a research study is valuable, it's important that you place your care first. If your symptoms are dominating your life, you might opt out of a research study so that you know that you are using a real treatment. Some research study participants are given a placebo (a sugar pill) for comparison purposes.
(3) Some companies have apparently paid physicians to recommend therapies, particularly implantable medical devices. In 2007, Medtronic agreed to pay $40 million to settle civil allegations that it paid kickbacks to doctors. The US Dept. of Justice said that between 1998 and 2003, Medtronic paid kickbacks that included sham consulting fees, bogus royalty payments and trips to tourist destinations. (Medtronic denied any wrongdoing in the settlement.)
Your goal is to work with a physician who is a "generalist." Inotherwords, they aren't invested in any specific treatment but rather understand the wide variety of treatments that are available so that if one doesn't work, another treatment can be suggested. Ideally, they will have a depth of experience working with chronic pelvic or bladder pain patients. They have a physical therapist on staff or can refer you to a nearby professional. Most all, we expect them to be compassionate and supportive. If ANY medical care provider suggests that IC is not real or that it is "all in your head", we strongly urge you to find another professional to work with.
Questions You Should Ask About Treatments
As you consider various IC treatments with your medical care team, you should talk with your doctor and research the therapy independently so that you have a thorough understanding of the potential risks and benefits. An excellent resource guide is the IC Survival Guide (by Robert Moldwin, MD) .
How does the treatment work? - What is it supposed to do? Does it coat the bladder like a bandaid? Will it help reduce inflammation? Does it fight pain? What is its method of action?
What are the potential side effects or risks? No treatment, even herbs or OTC supplements, is risk free. They all have potential side effects based upon your personal medical history. Antidepressants, for example, are somewhat notorious for causing dry mouth, weight gain or an irregular heart rate. Ask your physician and your pharmacist about the potential risk of each therapy. If you are considering pregnancy, some medications may create risk for a developing fetus. Please read!
What has been the doctor's experience with this treatment? Is it a new treatment or an old treatment in his/her clinic? ? What can you expect while you're having the treatment??? How about 24 hours (or longer) later?? What are the short term, as compared to the long term results with this therapy??? Will it require more treatments down the line??/ If so, how many?? Is it reversible?? This is particularly important for the more aggressive, invasive instillations and surgeries.
What research is available which shows that this therapy works with IC patients??? You should know about the newest method that we use to assess a treatment. It's called EVIDENCE BASED MEDICINE. What that means is that as you consider a therapy, you should ask for evidence that proves that it works with your symptoms and/or interstitial cystitis. For example, taking one patients suggestion that a treatment (i.e. a vitamin) can help with IC or information from a company trying to sell you a vitamin is the least reliable information you can base a decision on. But, if there is a research study which proves that this treatments can help reduce IC symptoms, then this is considered a more sensible decision. Don't forget to ASK for a copy of the study, preferably published in a medical journal.
During a bladder instillation, the bladder is filled with a therapeutic solution (i.e. a rescue instillation) via a catheter. The instillation is held for varying periods of time, from a few seconds to 15 minutes or more (known as "dwell time"), before being drained or voided. Some treatments are thought to coat and protect the bladder, while others are thought to suppress inflammation. Many physicians instill combinations of ingredients (“bladder cocktails”) that they believe work better than a single agent. Several instillations have been used for IC:
The most promising development in the past ten years in treating IC is the development of "rescue" instillations (aka rescue cocktails, anesthetic cocktails or a therapeutic solution), a customized solution that can be placed in the bladder to immediately help reduce pain and discomfort. Though it requires a catheter (don't let that stop you!), these instillations can be used in the doctors office, at home, and even by children.
Rescue instillations are designed to help restore the mucous in the bladder, to fight pain and inflammation. Many doctors and clinics have created their own custom formulas for this purpose. The core pain fighting ingredient is usually an alkalinized local anesthetic, such as lidocaine or marcaine. Elmiron or Heparin are included in most instillations because they are believed to help restore the bladder mucous and to create protective barrier in the bladder. Many physicians also include a corticosteroid to help control inflammation, as well as an antibiotic if infection is an issue.
In 2005, Dr. Lowell Parsons (UCSD) released the results of a study which found that 94% of patients receiving a 2% lidocaine instillation reported immediate symptom relief after one instillation. 80% of those patients had sustained relief after a two week period. Dr. Parsons concludes "Intravesical treatment with combined heparin and alkalinized lidocaine immediately reduced the pain and urgency of IC in most patients treated for newly diagnosed IC. Symptom relief lasted beyond the duration of the local anesthetic activity of lidocaine, suggesting the solution suppresses neurologic upregulation."
DMSO : RIMSO-50
Dimethyl sulfoxide (DMSO, RIMSO-50) was the first of two therapies approved by the US FDA for the treatment for IC in the early 1970's. Its use, however, has quickly diminished due to the growing popularity of rescue Instillations and research that suggests that DMSO can be damaging to the bladder muscle. Many clinics no longer use DMSO treatments.
DMSO is a dilute, sterile, and purified version of a chemical that was used for many years as an industrial solvent before being found to have anti-inflammatory, analgesic, muscle relaxant, mast cell stimulation and collagen dissolution properties.
Research presented at the 2002 American Urological Association Annual Meeting suggests that DMSO may cause damage to the muscle of the bladder when used at the 50% dosage. In "DMSO - Does it change functional properties in the bladder wall" (Diethild Melchior*, C Subah Packer, Tomalyn C Johnson, Martin Kaefer, Indianapolis, IN) researchers tested various concentrations of DMSO on strips of bladder muscle to try to determine what, if anything, the DMSO did to muscle. They found that DMSO triggered intense muscle contractions and, at doses higher than a 30% solution, caused what appeared to be long-lasting contractions that could be irreversible. Since the normal FDA approved dosage used for humans is 50%, researchers suggested that the dosage be reduced to, at most, 25% to avoid any possibility of muscle damage.
A course of treatment involves six to 8 weekly instillations. Usually, patients will have one to two courses of therapy. DMSO is rarely used as a long term therapy, particularly if patients show no response to treatment.
A few patients experience intense burning and discomfort for a short time after the first treatment which often subsides. The most common side effect is a garlic-like taste in the mouth and an odor to the breath and body, occurring a few hours after instillation and continuing for about a day (2). About 10% of patients report bladder spasms and irritability (3). The manufacturer of RIMSO-50 strongly recommends that patients have "slit-lamp eye examinations" before and after treatment to verify that no eye lens opacity (clouding) has occurred with treatment. DMSO causes fetal abnormalities in animals and should not be used during pregnancy, within four weeks of a bladder biopsy or if infection is present (4).
DMSO research studies report a 35-40% relapse rate after a 4-8 week course of treatment. However, 50-60% of those patients responded favorably to additional DMSO treatments (1). For those who relapse, DMSO may be administered in one to two month intervals (maintenance therapy), depending upon their symptoms. If patients do not respond to DMSO initially, it may be combined with hydrocortisone, heparin and sodium bicarbonate.
Silver Nitrate, Clorpactin, BCG and RTX
These therapies are now rarely used for interstitial cystitis due, in part, to clinical trials which found no effectiveness in reducing symptoms and the tremendous pain and discomfort they can cause. The American Urological Association no longer lists these as treatment options for IC. See above for additional information.!
A variety of oral medications and food supplements are available, including:
Bladder Coatings: Elmiron
ELMIRON® was the first oral drug developed and approved specifically for the treatment of IC and is now being distributed in the USA by OrthoUrology. It has been extensively discussed, studied and tested but much is still unknown about it. Dr. Lowell Parsons believes that it works by providing a protective coating to the bladder wall that prevents urine, bacteria and other irritating substances from penetrating an otherwise "leaky" bladder lining and causing inflammation in the muscle tissue.
In a very large physician use study in multiple centers across the USA, 2,810 patients were studied over a ten year period. The data reveals thatpatients showed a significant improvement during their course of treatment. The trial demonstrated that 42% of patients who had been treated for up to six months, and 60-62% of those treated for 24 months, had reported total, great or moderate relief of bladder pain. Of patients treated for six months, 55% had experienced a reduction in nocturia and 44% had reductions in frequency. Among patients who had no response to DMSO, more than 50% experienced moderate or better improvement (8).
Unfortunately, this therapy can provoke side effects such as gastrointestinal upset or some hair loss. In some cases, your doctor may want to monitor your liver function through periodic blood tests.
Antidepressants: Elavil, Imiprimine
Elavil® (amitryptyline) is a tricyclic antidepressant that, in low doses, is effective at relieving chronic pain by interfering with nerve activity. It is commonly prescribed for several chronic pain conditions, including irritable bowel syndrome (IBS) and fibromyalgia, two conditions that many IC patients also have. Its strength as a long-term pain management strategy, an essential part of an IC tool kit, makes it helpful in treating IC. It also may inhibit bladder spasms.
Several studies have reported a positive response with amitriptyline (9,10). Hanno (11) reports that amitriptyline was quite effective for patients who had not responded to hydrodistention and DMSO. Amitriptyline has side effects which merit consideration prior to taking it, including dry mouth, drowsiness and, for some patients, cardiac arrhythmias (irregular heart rate) and tachycardia (rapid heart rate).
Other antidepressants, such as Tofranil® (imiprimine), may be options for physicians to consider. Amitriptyline, however, remains the most extensively tested medication of this type for IC.
Antihistamines: Hydroxyzine (Vistaril & Atarax)
Mast cells are one of the body's first lines of defense against substances and invading organisms. Biopsies of some interstitial cystitis bladders, particularly ulcerative IC, have been found to have unusual numbers of mast cells. There is also speculation that mast cells in IC bladders do not function normally. In any case, antihistamine treatment in IC is aimed at stopping the "histamine-mast cell-inflammation" cycle in the bladder.
Atarax® and Vistaril® (generic names: Hydroxyzine HCL or Pomoate) are believed to block the activation of mast cells (12). Hydroxyzine has been shown in scientific studies to be very effective for IC patients, particularly patients with a history of allergies. Often used in conjunction with Elmiron, Hydroxyzine is now one of the most important therapies for IC patients.
The most common complaint of patients taking these drugs is that they cause drowsiness, dry mouth or irritability. Some people find that their drowsiness decreases in a few days. Hydroxyzine pomoate may be better tolerated than hydroxyzine HCL in some patients.
Antispasmodics: Ditropan, Levsin, Urispas, Urised
Doctors attribute much of the urgency and frequency associated with IC to spasms of the bladder muscle. Drugs such Ditropan are often prescribed to calm the bladder spasms. Levsin and levsinex may also be used to treat irritable bowel syndrome, a condition which occasionally accompanies IC and involves spasms of the colon.
Common side effects of antispasmodics can be dry mouth and drowsiness. All of the antispasmodics listed above are similar in terms of how the main ingredient helps IC, but they differ in terms of added ingredients and preservatives used. Some people may find they respond differently to each of the various brands.
Urinary Anesthetics: Urised, Pyridium
Pyridium (phenazopyridine hydrochloride) is a prescription pain reliever that works by being excreted into the urine and soothing the bladder lining. It is often prescribed for temporary pain relief after surgery, cystoscopy, or catheterization. It is not prescribed for long-term use to control IC symptoms because it can build up in the body and cause harmful side effects. Pyridium colors the urine a very noticeable orange, and care must be taken to prevent staining of undergarments. Patients who wear contact lenses should be aware that occasionally contacts have become stained also.
Uristat is a non-prescription version of pyridium available at drugstores. It, too, should not be taken as a long-term pain treatment strategy but may be helpful for occasional use. IC patients who have chronic bladder infections find it useful to have on hand for times when they have bladder discomfort but can't get in to see the doctor right away.
Quercetin Based Supplements
Quercetin based supplements have become quite popular in recent years particularly with patients who are intolerant to the above medications and/or who lack prescription drug coverage and can't afford pharmaceuticals. Quercetin was first used effectively with prostatitis patients. In a 1999 study of men with nonbacterial prostatitis, 67% of patients taking a purified quercetin 500 mg capsule twice a day had a significant improvement in symptoms (at least 25% improvement in symptom score) versus 20% of the men taking placebo. [Quercetin in Men with Category III Chronic Prostatitis: A Preliminary Prospective, Double Blinded, Placebo Controlled Trial Shoskes DA, Zeitlin I, Shahed A, Rajfer J. Urology, 54(6):960-963, 1999].
Because prostatitis and interstitial cystitis are quite similar, researchers wondered if it could also help interstitial cystitis. Dan Shoskes, MD has conducted several studies that demonstrate that quercetin (CystaQ, ProstaQ) can be very effective in reducing the symptoms of IC. He reported that the treatment was "well tolerated and provided significant symptomatic improvement in patients with IC." Farr Laboratories developed both CystaQ and ProstaQ.
The Algonot family of products (Algonot, Cystoprotek & Prostoprotek), developed by IC researcher Theoharis Theoharides MD (Tufts University) has created a lot of excitement among bladder patients. They not only use quercetin, but also include glucosamine, chrondroitin and sodium hyaluronate. These latter ingredients are believed to help coat and potentially rebuild the bladder wall. In 2006, the results of a remarkable study were released which showed that Cystoprotek had helped patients who had failed to respond to any other therapy. Specifically, 269 patients took Cystoprotek for an average of 11 months and showed an average 51.2% inhibition (i.e. improvement) in their symptoms. Read the study abstract!
A variety of other products are on the market, including BladderQ, Desert Harvest Aloe (with or without quercetin), pure hyaluronic acid.
Pelvic Floor Rehabilitation
IC patients frequently struggle with unusually tight pelvic muscles and/or trigger points that may make it difficult to start their urine stream, sit for long periods of time or enjoy sexual relations. Many IC clinics now provide physical therapy to help patients control and reduce muscle tension.
Neuromodulation is considered only after all other therapies & self-help strategies have been tried and failed, including instillations, oral medications, pelvic floor therapy and, of course, diet modification. Sacral neuromodulation is a controversial therapy due to the potential risks, lack of published long-term data and difficulty in removing the device. A less invasive form of neuromodulation, post-tibial nerve stimulation (i.e. Urgent PC), was recently approved by the FDA for frequency/urgency.
Because some patients noted an improvement in symptoms after the bladder distention done to diagnose IC, the procedure is often thought of as a treatment in itself. Bladder distention involves filling the bladder with water (while the patient is under general anesthesia) and letting it expand to a degree that is too painful to achieve while the patient is awake. Researchers are not sure why distention helps, but some believe that the procedure may increase bladder capacity and interfere with the pain signals transmitted by nerves in the bladder.
La Rock et al. (4) report that 20% of patients experience short term symptomatic relief of three months or less. Almost all IC patients experience a significant, temporary worsening of pain, urgency and frequency for a few days after the distention. Your doctor can prescribe pain medication to help you through this. After the post-distention pain wears off, some patients find their symptoms gradually return to pre-distention levels but experience no real improvement. For others, the symptoms continue to improve and stabilize at a more comfortable level than pre-distention.
The degree of improvement and length of time this improvement lasts can vary widely among individuals-- days to months. It is also impossible to predict who will and who will not respond. Because this involves the risks of general anesthesia, the merits and drawbacks should be carefully evaluated and discussed with your doctor.
This option is considered only if an IC patient has failed all available treatments and the pain is severe. Most doctors are reluctant to operate because the outcome is unpredictable in individual patients -- some people continue to have symptoms even after the surgery. Anyone considering surgery should discuss all the potential risks and benefits, potential side effects and potential complications with the surgeon and family. Surgery requires anesthesia, hospitalization, and weeks or months of recovery, and as the complexity of the procedure increases, so do the chances for complications and failure. The surgical techniques listed below are generalized summaries of each kind of procedure. Many variations on each type exist.
The subject of antibiotic treatment for IC patients is both complex and controversial. Because our condition has series of flares and remissions, it's often very difficult to tell if you are having a flare or an actual bladder infection. It's very easy for both patients and physicians to assume that bladder symptoms are the result of infection. Yet, in IC, the vast majority of patients appear to have "clean" urine cultures. Yet, there are some researchers and patients who strongly believe that bacteria plays a role in IC. The American Urological Association does not list antibiotic therapy as a treatment for interstitial cystitis!
The most important book for a newly diagnosed patient, the IC Survival Guide was written by one of the most respected clinicians in the USA, Robert Moldwin MD. It covers diagnosis, treatments and pain care. Most of all, it will help you credibility test proposed treatments with your physician. It's a must read! ($13.99) Buy Now!
Heal Pelvic Pain and Ending Female pain are two superb resources for patients struggling with pelvic floor dysfunction and pelvic pain. Written by two of the best physical therapists in the USA, they share exercises that you can do at home to relax your floor, tips on how to make intimacy more comfortable and much more! Buy Now!
The ICN Special Reports, including our Guide to Managing IC Flares & 2012 Guide to the IC Diet, will help you understand, in depth, why and how flares occur as well as an hour by hour flare management guide. Our diet guide shares how to select foods that can help you soothe rather than irritate your bladder. Buy Now!
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A note from ICN Founder Jill Osborne - Fair warning! Rant coming! The most frustrating phone calls I get in our office are from patients who say that "nothing works" but then can't tell me what they've tried. They don't have a clue what solution their doctor placed in their bladders. They don't know what medications they have taken or what they were supposed to do. Unacceptable. You should know the names of your treatments and what they are supposed to do. Just letting your doctor put anything in your bladder without discussion first is, in my opinion, foolish! Some even assume, incorrectly, that a bladder coating is a pain pill. Not true! This is the hardest and most important part of your job as a patient. You have to pick therapies, track what they are doing, record what you've done and, in general, be an active and informed patient.
Here's a few questions for you.
#1 - Do you have a list of what you've tried so far? By date? Why you stopped? If not, make it or buy the ICN Medical Records File
#2 - How are you measuring if a treatment is working?? Far too many patients stop therapies too early because they assume they aren't getting better. If your frequency has improved from 30 times a day to 20 times a day, the something good is happening. But, you won't know that unless you do a voiding diary so that you can see, first hand, if a therapy is working for you. The ICN Medical Records File will tell you how to do it.
#3 - Are you monitoring side effects and bringing them to the attention of your doctor? If a treatment is giving you a side effect which is dramatically reducing your quality of life (i.e. diarrhea), then talk with your doctor about your dosage and/or if there is another therapy that could benefit.
#4 - Do you when to stop a medication? Some medications can create tolerance which means that you can't stop them cold turkey without feeling some withdrawal effects. If you are going to stop a medication, particularly a pain medication, please talk with your doctor in advance about how you should proceed.
Good luck! You can do this. I believe in you!