30 Daily Facts about IC/BPS

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  1. Interstitial cystitis is not a rare condition. New epidemiological studies revealed that three to eight million women in the USA and one to four million men with IC may have symptoms of Interstitial Cystitis. That could be as many as one out of every 26 people in the USA.
  2. There are various forms of "cystitis" that are easily confused. Bacterial cystitis, aka urinary tract infection, is treated with antibiotics. Radiation cystitis occurs after radiation therapy for cancer. Eosinophilic cystitis is a rare, inflammatory cystitis. Interstitial cystitis is more of an "injury" to the bladder and/or bladder lining. Antibiotics are considered useless in the treatment of IC/BPS.
  3. IC Awareness Month Daily Fact #3 – In 2011, the first standardized protocol for the diagnosis and treatment of IC was released by the American Urological Association. This provides a six step treatment plan that minimize the risk of side effects and reduces costs. If your doctor suggests surgery (Step 6), Botox (Step 5) or neuromodulation (Step 4) as a first line therapies, you MUST read this document first.

    The AUA Guidelines encourage patients to start at Step One, complete everything there before going to Step Two, etc. Why? Because the lower steps have fewer risks and side effects and in this challenging economic times, they are also much less expensive.

    Surgery is the LAST option available and should be explored only after Steps 1 through 5 have been completed! Download Our Free IC Treatments Fact Sheet Here!

  4. The role of the pelvic floor muscles in contributing to pelvic pain is now undeniable. Urologists often describe muscles "as tight as rubber bands" when examining interstitial cystitis patients. Patients with pelvic floor dysfunction may have difficulty starting their urine stream or feel as if something is falling out of them. Vaginal burning is a common symptom. Many IC clinics around the country now have physical therapists on staff to provide "hands on" therapy with excellent results.
  5. In the past three years, ketamine bladder syndrome has emerged as a new, critical health need. Researchers around the world have documented growing numbers of young adults who present with severe urinary tract symptoms and bleeding, resulting from their use of ketamine. A recreational drug known for its dissociative anesthesia effects, ketamine has replaced heroin as the drug of choice throughout much of the world due, in great part, to its very low cost. No research has been done to determine the incidence of ketamine bladder syndrome in the USA because most physicians do not ask about drug use when presented with bladder symptoms. Physicians must be educated about the role of ketamine in triggering bladder damage. More information can be found at: http://www.ketaminecystitis.com
  6. One of the easiest ways for patients to try to reduce their bladder discomfort is by removing foods which are high in acid, alcohol or salt. Even one cup of coffee day, one green tea or one soda can trigger severe bladder irritation and discomfort. Worse, that daily acid wash may prevent bladder healing and IC treatments to be effective.
  7. IC affects not only the patient but also the extended family. Parents with IC worry about their ability to support their family. Children wonder why their parent cannot attend normal daily functions, like baseball games, and often mistakenly assume that a parent is dying. Tragically, some family members and friends don’t believe that IC is a real condition and/or that the patient needs support and encouragement. Research presented at AUA 2010 demonstrated that patients with a spouse who was not supportive had a poorer outcome. The ICN has some great videos that can help educate family members. Find them at: https://www.ic-network.com/videos/
  8. Some patients have had inappropriate hysterectomies only to discover, after the fact, that their pelvic pain was originating from their bladder. IC patient Angela Burch won a $2,000,000 federal medical malpractice settlement in Florida when her ob-gyn needlessly removed her healthy uterus even after the urologist reported that she had interstitial cystitis. This is not unusual. Many physicians, particularly ob-gyns, primary care or emergency room personnel, are poorly trained in the diagnosis and treatment of bladder pain patients. Educating gynecologists and primary care providers is a critical need.
  9. Finding a urologist that specializes in IC is challenging. Most work in major urology clinics or hospitals affiliated with universities and conduct IC research studies on the side. One clever way of finding an IC specialist is by looking at the latest clinical trial announcements or IC journal articles. The IC Network has an online searchable database of care providers.
  10. Children as young as 3 years old have been diagnosed with interstitial cystitis yet, sadly, there are no pediatric urologists in the USA who specialize in IC. Worse, some physicians underestimate bladder pain and/or refuse to provide pain treatment for children. This is a desperate need. If you know a urologist who enjoys working with children, please submit their name to us.
  11. Pelvic pain patients may find intimacy uncomfortable at times. Men with IC may feel discomfort at the moment of ejaculation while women report their most intense discomfort in the 24 hours after sex. Having an "after sex" routine to reduce muscle tension can be helpful, including using heat, warm bathes and, possibly, a muscle relaxant. Vaginal valium suppositories help reduce painful pelvic floor spasms. You can find tips for intimacy in the ICN Guide for Intimacy and Sexuality
  12. Approximately 5% of IC patients have Hunner’s Ulcers. These larger, bleeding wounds in the bladder can be very painful. Treatment of these ulcers usually involves laser therapy, fulguration (heat) and/or the injection of a steroid, triamcinolone, into the center of the ulcer. A new therapy, LiRIS, would found to heal Hunner’s Ulcers in a preliminary clinical trial released in Spring 2012. Ulcers can recur in the same location and may require a few treatments. Read more about LiRIS
  13. Does your IC flare when you’re having bowel discomfort? In the September 2008 article, Pepperoni Pizza: How the bowel can trigger bladder pain, researchers found that when the bowel becomes irritated, the bladder shows signs of irritation as well. Perhaps this explains why IBS and IC patients both avoid caffeine, a well known neurostimulant.
  14. Surgery is rarely considered for the treatment of IC and only after a patient has tried and failed ALL of the easier therapies, including oral medications, bladder instillations, some experimental therapies (i.e. botox). A bladder augmentation can help increase bladder capacity by using a section of the bowel to enlarge the bladder. An excellent resource and reference guide for IC treatments, including surgery, is the book "The Interstitial Cystitis Survival Guide" by Robert Moldwin MD.
  15. Patients with more severe IC who are unable to work may apply for disability benefits. There are several different disability programs available depending upon your state. State disability is usually short term disability with the goal of helping you return to work. Federal disability programs, such as SSA or SSI, require that you be unable to work. While Social Security Disability is notorious for denials at the application stage for all disabilities, patients can (and should) appeal their decisions and often win benefits. A voiding diary serves proof of bladder symptoms and should be submitted with other evidence supporting your claim of disability. Learn more about disability programs in the ICN Disability Resource Center.
  16. IC patients often experience their most uncomfortable symptoms at night when distractions are fewer and they notice their bladder symptoms more. They may feel a constant need to urinate or an uncomfortable sensation of bladder fullness that is very difficult to ignore. Night time discomfort often relates to foods eaten during the day that irritate the bladder. Taking a warm shower or using a heating pad can help improve sleep quality. Some medications may also be helpful.
  17. IC patients should keep track of their diagnostic tests, treatments and physician appointments so that they can clearly discuss their history with new physicians. There’s nothing worse than being asked "what treatments did you try?" and to respond "I don’t know." That’s unacceptable. You must track your treatments. ICN Medical Records Kit.
  18. Before allowing any instillation placed into the bladder, a wise patient will ask "What is it?" "How does it work," "When will I know if it’s helping?,""What are the risks or benefits?" Several instillations are now rarely used, including: clorpactin, silver nitrate, BCG or RTX. Find more questions to ask in the ICN Exploring IC Treatments Guide.
  19. It’s not unusual for patients to choose between buying food and/or medication. Many simply cannot afford to pay for treatment. Luckily, most IC medications are available through their manufacturers drug assistance programs. A list can be found in the ICN Drug Assistance Center.
  20. Many patients find sitting for long periods of time to be uncomfortable, especially in a car, on a bus or on a plane. When travelling, try to break up long car or bus rides into smaller segments. Cars with a smooth suspension, such as larger sedans or SUV’s, are usually much more comfortable for IC patients to drive in. If you struggle with anxiety over finding a restroom, consider carrying some TravelJohns with you. These can be used in a pinch when a restroom isn’t easily available. IC friendly chair cushions might make trips more comfortable.
  21. IC patients often struggle with anxiety symptoms. The new UPOINT System for the Clinical Phenotypes for Chronic Pelvic Pain assesses for anxiety disorder and encourage patients to seek treatment. Many local hospitals provide affordable anxiety management classes that, in a few short weeks, can teach essential coping skills. The ICN offers a video on anxiety and IC.
  22. A bladder instillation uses a catheter to deliver medication through the urethra and into the bladder. A small pediatric catheter is often used to minimize discomfort. Slippery "hydrophilic" catheters (i.e. such as the AstraTech Lo Fric catheter) are generally easier to insert and remove than dry catheters. Learning to self catheterize is easy and can be very liberating for IC patients who can then perform bladder instillations at home.
  23. IC support groups exist throughout the world and USA. Use the ICN Support Center to find one near you. If you can’t find one close to you, you can participate in live support group meetings over the web, all from the comfort of your home. Please consider starting a support group in your town if one is not present.
  24. Cranberry products are well known for triggering irritation in an IC bladder, as well as many other fruit juices and products. Fruits high in acid should be avoided such as oranges, grapefruits, lemons and limes. Fruits that are considered more IC friendly are pears, mild sweet apples, blueberries and more. Find more diet tips in the 2009 IC Food list.
  25. Botox is one of several experimental therapies currently in use in urology clinics. Botox can be injected into the bladder wall where it deactivates the nerves that trigger some bladder symptoms. It can be hard to find a clinician who uses botox therapy. Most major urology clinics and universities may have it avalable.
  26. One of the most promising new therapies under development is the use of liposomes. Led by Dr. Michael Chancellor (William Beamont Hospital, Royal Oak MI), liposomes can be used to deliver medication into the bladder (i.e. such as botox) but some research has shown that the empty liposome itself can be helpful. This research is new, exciting and still evolving and is yet one more reason why we support making donations to this vital IC research center.
  27. IC patients report that wines and beer often trigger IC flares, though the types of wines and beers make a difference. Low acid wines, such as chardonnay, and pale ales, such as Blue Moon, appear to be the best tolerated. Surprisingly, straight alcohols were also more tolerated. Read more about it.
  28. Planning a pregnancy when you have interstitial cystitis can be challenging but is very doable. Some patients symptoms disappear during pregnancy while other patients may notice that their symptoms worsen. Medication use must be discussed carefully with your physician. Luckily, IC researcher Deborah Erickson has written a wonderful research article that can help. Read more in the ICN Pregnancy Resource Center.
  29. IC patients may be afraid to eat for fear of irritating their bladders further. Take heart. There are many bladder friendly foods that can be enjoyed. The secret is to start with fresh, healthy foods rather than fast or junk food. The 2009 IC Food List breaks foods into three categories and lists foods that are IC friendly, foods that are worth trying and foods that should be avoided. Read it now in the ICN Diet Center.
  30. A rescue instillation, composed of heparin, lidocaine and other ingredients, is one of the most popular therapies in use today for IC because it can help to numb the bladder and provide a protective coating. There are many formulas currently in use. Read more in the ICN Rescue Instillation Guide.
  31. Neuromodulation, aka sacral nerve stimulation, is not FDA approved for the treatment of IC though it has been used in many clinics to help control urinary frequency. This therapy requires careful thought and consideration. There is a trial phase which, if succesful, can lead to a permanent implant. The device, however, also has thousands of adverse event reports filed with the FDA’s Maude Database, including MRSA infection, device malfunction, lead migration, pain at the implant site and, sadly, some fatalities. Neuromodulation devices require life long medical care and can result in multiple surgeries over time. Read more in the ICN Neuromodulation Center.
By | 2017-07-21T07:46:47-07:00 September 11th, 2013|Announcements, Daily Facts|Comments Off on 30 Daily Facts about IC/BPS

About the Author:

My Google Profile+ Jill Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. Representing the IC community, she has appeared radio and TV shows including the PBS “Healthy Body Healthy Mind” television series. She serves as editor of the IC Optimist quarterly magazine and has authored dozens of articles on IC. She spends the majority of her time developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app!