IC Awareness Month

September is IC/BPS Awareness Month

About IC/BPS

Patients with interstitial cystitis experience “an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder” that lasts longer than six weeks in the absence of infection or other identifiable causes. The symptoms can vary greatly between individuals and even for the same person throughout the month, including urinary frequency, urgency, nocturia, pressure and/or pelvic pain. People with severe cases of IC/BPS may urinate as many as 60 times a day.

Physicians may refer to IC with a variety of names, including: bladder pain syndrome (Europe),hypersensitive bladder syndrome (Japan), urologic chronic pelvic pain syndrome (research studies) orchronic pelvic pain syndrome (CPPS). In the United States, it is commonly referred to as IC/BPS.

Pain levels can range from mild tenderness to intense, agonizing pain. Pain typically worsens as the bladder fills with urine and is then relieved after urination. Pain may also radiate to the lower back, upper legs, vulva and penis. Women’s symptoms may fluctuate with their menstrual cycle, often flaring during ovulation and/or just before their periods. Men and women may experience discomfort during or after sexual relations.

When an IC bladder is closely examined during a hydrodistention with cystoscopy, physicians often find small, bleeding wounds, also known as petechial hemorrhages or glomerulations. About five to ten percent of patients may have larger, more painful wounds known as Hunner’s Ulcers. Some patients with mild IC may have bladders that appear normal during a cystoscopy.

The RAND Interstitial Cystitis Epidemiology (RICE) studies have provided astonishing new data on the prevalence of IC in the USA. This National Institutes of Health funded study estimated that 3.4 to 7.8 million women in the USA have symptoms of interstitial cystitis, much higher than was previously thought. Approximately 1 to 4 million men appear to have IC though the true rate has yet to be determined because men are often diagnosed chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) instead. IC can occur in children, teens, young adults and the elderly.

New American Guidelines Released

New American guidelines on interstitial cystitis were released by the American Urology Association in 2011. The Americans will be using the name Interstitial Cystitis / Bladder Pain Syndrome (IC/BPS) to describe the disorder. The formal definition will be ” an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes.”

The committee suggests a six point treatment protocol. Patients should INITIALLY receive good educational materials and outreach, including the introduction of the IC diet principles and general stress and relaxation strategies as needed. After this, a new six step protocol for treatment was suggested:

  1. First Line Treatments include diet modification, behavioral strategies, meditation, pelvic floor relaxation and the use of various OTC neutraceuticals such as calcium glycerophosphate (Prelief), etc.
  2. SecondLine Treatments include the use of oral medications including amitryptiline, cimetidine, hydroxzyine and pentosan polysulfate and/or intravesical Instillations including dmso, heparin and lidocaine.
  3. Third Line Treatments are to be used if no acceptable relief occurs with first line options or if the symptoms suggest a need for a more invasive approach. These include a cystoscopy under anesthesia with a short duration, low pressure hydrodistention and, if present, the treatment of Hunner’s Ulcers with fulguration, laser therapy or triamcinolone injection.
  4. Fourth Line Treatment include oral cyclosporine and/or the implantation of a neurostimulation device.
  5. Fifth Line Treatment is the use of Intradetrusor Botox A.
  6. Sixth Line Treatments are the rarely used surgical methods.

Therapies to avoid included long term antibiotics, intravesical BCG, intravesical RTX, high pressure long duration hydrodistentions and long term oral steroid use. Kegel exercises were also discouraged given the presence of pelvic floor dysfunction in IC.

Read more about the AUA Guidelines here!

Learn more at: http://www.ic-network.com


  1. I have yet to be diagnosed havin MRI in October ha cytoscopy but bladder appeared normal I meet all symptoms of ic and ibs my urologist said she wants to rule everything else out before diagnosing me with ic because no cure and Im stuck with it but I’m in so much pain and miserable my diet is changing fast I can’t have things I love any more because I pay the price if i do so ready for some relief the pain just is awful I’m miserable :(

  2. I have been diagnosed with IC after many years of agony and disregarding by Doctors. My cytoscopy showed various areas of irritation. My problem is that I no longer have health insurance, do not qualify for Medicaid because my husband makes just over the limit and I surely cannot afford to go to my doctor, let alone my specialist. Free clinics offer no help, so I guess I will have to just live with it now. People, be glad if you have the means or insurance to at least go to a Dr..keep going to sifferent Drs and you will eventually find one with some brains to diagnose you.

    • So sorry. I can relate to your frustration. Doctors were no help to me when I first had IC symptoms over 15 years ago. After spending much money and time I finally gave up and tried to push through the agonizing pain.
      A few years ago I found the Icnetwork and thanks to information I learned on their website I am pain free most of the time now. Diet and pelvic floor exercises have been the most important changes.
      Don’t give up!

  3. I have a mild form of IC/BPS. If I stick to the IC diet I can control my symptoms of frequent urination and bladder irritation. I also use Prelief before meals. When I go for long periods with no symptoms I get careless with my diet and maybe eat something not on the IC diet list and my IC will immediately flare up again and I’m miserable with bladder irritation, going to the bathroom every 5 minutes feeling like I need to urinate but it’s just a trickle. I stay in bed most of the day when I have a flare up because of the discomfort of my bladder. This drives me back to sticking to the IC diet again. I don’t have medical insurance either and so I avoid going to the doctor. I hope I will soon have medical coverage under the Affordable Care Act and can actually see a doctor when needed. I am a 58 year old woman who began having this problem about one year ago and it continues.

  4. Shawna there are patient assistance programs offered by medical institutions like Stanford in which you may be able to afford care. It’s horrible to feel like you can’t even pursue the options that might help you. But on the other hand, as in my experience, three years of doing everything possible medically/surgically have not changed my symptoms at all. In fact almost everything recommended by urologists has made me worse. :( I’ve finally gotten some pain management help with pain medications through a psychiatrist who I must pay out of pocket because the “pain specialists” refused to give me pain medications. Instead they wanted to give me the interstim (trial failed) and put me on epilepsy drugs and do more and more invasive and painful procedures. I felt like they were just trying to suck money out of me and my insurance. With the right amount of pain medication for flare ups, my life has finally changed for the better. I’m not afraid to go back to some of the work I used to do because I know I can, at least in the short term, take the medication to get me through the job. I also was able to take a trip for the first time in three years. I hope you don’t give up Shawna!!!

  5. The FIRST STEP to gaining some relief short term is DIET. You will have to make the effort so many of us sufferers have made in analyzing your daily diet.
    1) Print up a list off of the web site of foods and drinks aggravating IC/BPS; most will be HIGHER in ACIDITY related FOODS and carbonated drinks than YOU realize or need.

    2) You will HAVE TO SACRIFICE elimination of certain foods you may like that irritate and cause symptoms of the IC/BPS bladder and bladder wall/lining. You may find altering your time of day for meals may help you make some progress as well.

    3) Chart your small steps of Progress; Analyze what elimination of foods seem to be helping you and what time of day becomes most difficult. Other illnesses will affect your symptoms such as advanced liver, pancreatic, intestinal and kidney disease. Keep track of everything you reasonably can to make steps of progress.

    4) Search the web sites for PHYSICIANS ACTIVELY interested and involved in IC/BPS medical care. Understand YOU must become actively involved in your care – and reward yourself for your knowledge and share your interest with others. You are not alone and you can make progress in your care.

  6. I have been suffering since May 2013 … was given an ultrasound last week which came back normal. I showed my doctor the printout from the website. She smiled. My next stop is a urologist after I pay for the ultrasound. I sometimes have to sit and sit to have some relief -the urgency to go is there ..but I can’t. Then there are nights when I am up and down up and down. I have all the symtoms of this disease No UTI, No other infections, Normal Paps and Normal Ultrasound…. daily pressure and pain which gradually gets worse with the urge to urinate. In fact I have loss the sensation to urinate… I only have the pain and pressure to let me know.

  7. I also do not qualify for insurance and its been hell trying to talk to a urologist. I have been diagnosed with chronic prostitis without any help from antibiotics. I have all the symptoms of IC but can’t afford a cystoscopy. I see a uroligist through a free care clinic, but that is every 3 months and can’t he preform the diagnostic tests he needs to do because of no insurance coverage. I have had this for 4 months and it has ruined my quality of life. Hospitals are no help, doctors don’t care, and specialists can’t work without insurance or thousands of dollars out of pocket. I am now 30k in hospital debt with no help and nowhere to turn.

  8. I came across your link via the IG Living website and now realise this is what I’ve had all my life. I’m now 50 and at 22 underwent stage 3 treatment after years of continual antibiotics for recurrent cystitis. Last year, after many life threatening infections and illnesses, I was diagnosed with a Primary Immune Deficiency and now receive weekly immunoglobulin infusions weekly. I would urge anyone with recurrent illness, pain, or infection to insist on a blood test for their immune levels. Please please please act on this, chronic pain and illness is exhausting and debilitating – these blood tests could change your life! Xx