Eight Myths About Interstitial Cystitis
Updated: Nov 3
Interstitial Cystitis (IC) is a condition that most people know nothing about until they are diagnosed. In fact, that was my experience when I was diagnosed with IC four years ago. After a full year of getting no sleep because I was going to the bathroom several times per night, I finally referred myself to a pelvic floor physical therapist who told me that my problem was actually my pelvic floor, not my bladder.
Before I reached that point, I saw a urologist. He did several tests and confirmed nothing was wrong with my bladder. He suggested medications that were not helpful. I decided to do my own research. That’s when I found out that the American Urological Association lists pelvic floor physical therapy as the only intervention for IC with a grade ‘A’ for its level of effectiveness. Unfortunately, I also came upon a lot of misinformation on the internet. I have since learned that there are several myths about IC.
Myth #1 – IC is solely a bladder condition. The fact is that IC is a complex condition, involving the bladder, pelvic floor and nervous system. The prevailing theory around this myth is that wounds in the lining of the bladder, called Hunner’s lesions, are the cause of the pain. The truth is that only about 10% of people with IC have these lesions. The rest of us do not have them, but rather, have pelvic floor dysfunction and a nervous system that has become overly sensitized to pain. This is why 70% of IC patients report significant improvement with pelvic floor physical therapy!
Myth #2 – IC is a rare condition. IC affects up to 12 million people in the US alone. Studies done by the RAND research organization found that 6.5% of women and 4.2% of men have IC. The origin of this myth goes back to the misconception that a patient had to have Hunner’s lesions to get an IC diagnosis. Physicians were taught that IC was a rare condition and therefore were hesitant to diagnose it. Researchers found that, despite visiting an average of 3.5 doctors about their symptoms, fewer than 10% of patients with IC were actually given a correct diagnosis.
Myth #3 – IC doesn’t affect men. The truth is, as mentioned earlier in this post, there is almost an equal incidence between men and women. Men with these symptoms are often misdiagnosed with chronic non-bacterial prostatitis. The origins of this myth date back to outdated information taught to doctors that IC is a rare condition and rarely occurs in men.
Myth #4 – There is a Standard IC Diet. This myth originates from the fact that between 80% and 95% of IC patients realize their symptoms can be triggered by certain foods and beverages. Unfortunately, many patients are given a piece of paper listing a highly restrictive IC diet. The truth is that each person’s diet will be unique and should focus only on eliminating specific trigger foods and having a healthy diet. All major experts and nutritionists support using an elimination diet to identify and eliminate only your specific trigger foods.
Myth #5 – Acid is the Enemy. The truth is that while some acidic foods are common triggers for IC, the body is very complex and “acid in” doesn’t equal “acid out”. This myth originated as a simplification to explain certain trigger foods. Citrus fruits and juices are common trigger foods for many patients so from there, the assumption was made that these foods were triggers because they “acidify” the urine and that all acidic foods should be avoided. In one interesting study, the researchers actually put a patient’s urine back into their bladder. They either had their very acidic urine put back into their bladder or a neutralized solution that was not acidic at all. Researchers were surprised to find that the acidity of the urine didn’t have any effect on symptoms. Early in my journey, I eliminated everything on the “IC Diet” out of fear but have since discovered that was totally unnecessary. I just had to figure out what my own trigger foods were and in what quantity.
Myth #6 – Elmiron Is the Only Medication Option. Though many urologists prescribe Elmiron and ask patients to wait 6-12 months to see if it works, there are many other treatment options that are recommended by the American Urological Association. Elmiron is the only medication approved by the FDA specifically for IC so many physicians prescribe this before trying other medications. Many other medications are commonly used “off label” for other conditions and have been shown to be significantly more effective than Elmiron but just have not gone through the FDA regulatory process. Not every patient will benefit from Elmiron. The worst impact of this myth is that IC patients are left waiting for months on Elmiron to see if it works or not when they could be benefitting from other therapies.
Myth #7 IC Pain Is All In Your Head. IC is a complex chronic pain condition affecting more than 12 million people of both genders. Chronic pain affects the. nervous system in a real way. Many physicians were taught in school that IC was a psychosomatic condition of “hysterical” women. Since IC was thought to be a condition that affected the bladder lining, patients with symptoms, and without Hunner’s lesions, were thought to be making those symptoms up. In fact, IC does have an effect on one’s mental state. Stress has been shown to increase pain levels and a long experience with pain can rewire the brain to be more sensitive to painful sensations. I can attest that, early in my journey with this condition, I felt very dismissed by the providers at the urology office and started to wonder if it really was all in my head. Needless to say, it was a relief to find out that there was a physical reason for my pain.
Myth #8 IC Is An Incurable Disease. This implies that we should sit back and wait passively for a “cure”. The fact is that true cures for medical conditions are extremely rare. The vast majority of medical conditions such as heart disease, diabetes and arthritis are treated instead of cured. There is so much we can do for IC right now. I am living proof that an IC patient can be symptom free given the right combination of treatments and lifestyle changes.
There were some silver linings to this story. Number one, the pelvic floor physical therapy worked! Number two, it led me to studying the pelvic floor and getting my certification as a pelvic health specialist! I know that IC can be managed very well with the right guidance to discover the root causes behind it.
As a physical therapist specializing in pelvic health, my primary goal is to discover the WHY behind a patient’s complaints. It’s not enough with an IC patient to say they have an overactive pelvic floor. I need to understand WHY they have an overactive pelvic floor leading to bladder symptoms. Many times, as in my case, it can be linked to orthopedic conditions such as hip joint abnormalities, weakness or lack of mobility which can cause the pelvic floor to overcompensate. Pelvic floor therapists are likely the best equipped to look at the whole person and determine what the root causes are.
Are you dealing with symptoms of IC? Undiagnosed pelvic pain? I would LOVE to help you determine the cause. Reach out to learn more!