Updated: Nov 4
Interstitial Cystitis (IC), sometimes also called Painful Bladder Syndrome (PBS), is a chronic condition causing bladder and pelvic pain or pressure and a frequent urge to urinate. It traditionally has been poorly understood and misdiagnosed, as it is often mistaken for chronic urinary tract infections, but there is no infection. Fortunately, we’ve learned a lot about the condition and how to treat it in recent years, but there are still many myths and misconceptions about IC/PBS that may actually be contributing to the mistreatment and misdiagnosis of this condition.
Dr. Nicole Cozean is a Pelvic Floor Physical Therapist and a Board Certified Women’s Health Clinical Specialist. Dr. Nicole has been a leader in the field of Pelvic Health and instrumental in our understanding of IC/PBS. So much so, she even wrote the book on Interstitial Cystitis, “The Interstitial Cystitis Solution: A holistic plan for healing painful symptoms, resolving bladder and pelvic floor dysfunction, and taking back your life.” Below are some of the most common myths Dr. Nicole has identified about IC.
Myth #1: IC is exclusively a bladder condition.
This myth originates from the theory that IC is caused by wounds in the lining of the bladder, or Hunner’s lesions, allowing urine to make direct contact with the bladder itself, leading to pain and the urgent need to empty the bladder.
Interstitial cystitis is much more than just a bladder condition. In fact, only about 10% of people diagnosed with IC actually have damage to the bladder, or Hunner’s lesions. More than 90% of those diagnosed with IC instead actually have pelvic floor dysfunction, which can cause or exacerbate all of the characteristic symptoms of IC, such as suprapubic pain, pelvic pain, urethral burning, and urinary urgency/frequency, among other symptoms.
This myth can often lead to mistreatment of IC, with bladder-focused treatments such as medications, bladder instillations, hydrodistention, and botox to the bladder, without actually addressing the underlying cause of the symptoms. Pelvic Floor Physical Therapy to address the pelvic floor dysfunction associated with IC is the most proven treatment, and the only medical treatment to be given “Grade A” evidence by the American Urological Association.
Myth #2: IC is rare.
This myth originates from the misunderstanding and under-diagnosing of IC. Because it was originally believed that Hunner’s lesions were the hallmark of IC, people who had all of the characteristic symptoms of IC but did not present with any bladder damage, were not properly diagnosed. A study done in the 1960s looking at the number of people with IC concluded that only 0.01% of people had the condition, but it was using a definition that we now consider incorrect! IC actually affects about 1 in 20 people, or 5% of the population.
One study also found that 90% of people with IC symptoms are not properly diagnosed. Because so many people are misdiagnosed, it is assumed that IC must be rare. This false assumption makes medical practitioners less likely to recognize and diagnose IC, therefore delaying or not utilizing appropriate treatments. It also can be isolating to people with IC, who might not recognize how many of their peers are also affected by this condition and dealing with similar symptoms.
Myth #3: IC is primarily a woman’s condition.
This myth seems to originate from studies that were conducted over 70 years ago, even before IC had a formal definition. This is also a self-reinforcing myth - because it is believed that IC is a woman’s condition, it is not diagnosed in men. So when researchers look at people who have been diagnosed with IC, it seems to confirm that it is only found in women!
Even though it has been widely assumed that IC is a condition primarily found in women, IC is nearly as common in men as women - 4.5% of men and 6.4% of women. Because an IC diagnosis is not considered, instead, men are often misdiagnosed with chronic prostatitis and given treatment for prostate issues that aren’t the actual cause of their symptoms.
This myth is harmful because men aren’t able to get the help they need. It also further perpetuates a stigma associated with IC, so women are more likely to have their pain and symptoms dismissed by the medical profession, especially when diagnosed with a condition that “doesn’t affect men.”
Myth #4: There is a standard “IC Diet”
This myth may have originated from an informal comprehensive list of foods that had been reported to be triggers for people with IC. This list was meant to be solely a resource for patients, but ended up getting misconstrued as a formal “IC diet” by some. In reality, everyone with IC is different. Some people might be highly sensitive to certain foods, while others may have no food sensitivities at all.
The majority of people with IC experience sensitivity to only a handful common triggers: caffeine, alcohol, tomatoes, citrus fruits and juices, and artificial sweeteners. However, experts and nutritionists support using an elimination diet to identify each individual’s specific trigger foods. The goal should be to identify what each person’s sensitivities are and eliminate them from their diet, while eating healthy.
This myth leads many people with IC spending a lot of focus on following a restrictive diet, leading to nutritional deficiencies, instead of simply identifying their personal food triggers. Not to mention, trying to follow a strict “IC diet” can feel really exhausting and nearly impossible.
Myth #5: Acidic foods should always be avoided.
This myth originated as a way to explain certain trigger foods. Because some common trigger foods (such as citrus fruits and coffee) are acidic, it was believed that these foods were triggers because they caused urine to be more acidic. So it was thought that avoiding acidic foods and/or supplementing with alkaline food and beverages were valid IC treatments and helpful to reduce symptoms.
While it may seem that acidic foods would “acidify” the body, the body doesn’t actually work this way. Acid in does not equal acid out. Our body's metabolism works to maintain a very stable pH, regardless of what we ingest, and the acidity of our urine naturally varies throughout the day to preserve that healthy pH balance. It’s also been discovered that pH does not have an effect on symptoms, and acidic urine does not impact symptoms more than urine that has a more neutral pH.
Similar to the impact of the “IC diet” myth, this myth can cause people to restrict their diet more than necessary and avoid healthy foods that they enjoy. As stated above, the primary goals of diet changes should be to simply identify and eliminate personal trigger foods and to eat healthy.
Myth #6: IC pain is all in your head.
Several factors may have contributed to the origin of this myth. One being that it was thought to be a condition that affected the bladder lining, so people with symptoms who did not present with Hunner’s lesions, were thought to be making them up. With any chronic pain condition, there is an interplay between physical and emotional health, and we know IC does have an impact on mental state. Stress can cause an increase in pain, and chronic pain can actually rewire the brain to become more sensitive to sensations from the body.
We know that IC is absolutely a real, physical condition that causes pain and urinary symptoms. But it is also important to recognize that mental and emotional health can be an important part of any chronic pain condition, like IC. By acknowledging that chronic pain does have an effect on the mind, taking steps to reduce stress and caring for emotional health can actually help to decrease pain and physical symptoms.
This myth can be one of the most damaging for people with IC. Being told your pain is all in your head is dismissing and trivializing people’s experiences. It is important to recognize the impact that mental health can have on IC, but that is just one piece to the puzzle in this complex condition!
Everyone is unique!
IC can be extremely frustrating, not only due to the impact of physical symptoms, but also being able to find trustworthy information. Healing is a journey, and while there is not always a quick fix, you can find what is effective for you to work towards being symptom free with the right team of providers. Working with a Pelvic Floor Therapist is a proven treatment - in fact, the only treatment with “Grade A” level evidence - to help find relief from IC symptoms, and people always benefit from a multidisciplinary approach to curate the most effective treatment plan!
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Dr. Becca Jones, PT, DPT, CSCS, is a 2016 graduate of New York University with her Doctorate of Physical Therapy. Her passion for supporting people through their pregnancy and/or post partum journey inspired her to specialize in pelvic health. Dr. Becca believes in providing holistic, individualized care in order to restore comfort and build confidence to get people back to what they love.