Interstitial cystitis has traditionally been poorly understood, misdiagnosed, and mistreated in patients. The pace of research is increasing, and we’ve learned a lot about the condition and how to treat it in just the last few years. Unfortunately, there are still many pervasive myths among both patients and their medical practitioners that are no longer supported by research. Below are some of the most common – and damaging – myths about IC.
In fact, it’s a myth that IC is exclusively a condition of the bladder. While it may feel like symptoms originate from the bladder, many times the bladder is actually an ‘innocent bystander’ (as Dr. Kenneth Peters describes it). Researchers from Stanford University demonstrated that only about 10% of patients with IC symptoms actually have discernable damage to the bladder (Hunner’s lesions).
Many patients diagnosed with IC are not found to have issues with the bladder, but instead pelvic floor dysfunction.
Pelvic floor dysfunction can cause or exacerbate all of the characteristic symptoms of IC – suprapubic pain, pelvic pain, urethral burning, urinary urgency/frequency, and more. It’s found in more than 90% of those with IC symptoms.
Pelvic floor dysfunction is also the reason that we see symptoms like painful intercourse, low back pain, hip pain, and the difficulty in starting a urine stream that are so common with IC. These symptoms have nothing at all to do with the bladder, but are hallmarks of dysfunction within the pelvic floor muscles.
The impact of this myth is that many patients focus exclusively on bladder-focused treatments (Elmiron, bladder instillations, hydrodistension, Botox to the bladder), but never address the actual underlying cause of their symptoms.
Pelvic floor physical therapy to treating the musculoskeletal issues around IC is the most proven treatment for IC, and the only medical treatment given an evidence grade of ‘A’ by the American Urological Association.
Because so many patients are misdiagnosed (or not diagnosed at all!), many medical practitioners assume that it must be rare.
In fact, IC affects about 1 in 20 individuals – 5% of the entire population.
Despite this, one study found that more than 90% of those with IC symptoms don’t have a correct diagnosis.
The false assumption that IC is rare has many consequences. It makes doctors less likely to recognise and diagnose interstitial cystitis, delaying effective treatment for millions of patients. It also isolates those with the condition, who may not realise how many of their friends, neighbours, or family members are dealing with similar symptoms.
It’s been widely assumed that IC was primarily a condition found in women. In fact, some resources still repeat the false statistic that 90% of patients with IC are women.
In fact, IC is nearly as common in men (4.5% of the population) as women (6.4%).
When considering that women are at higher risk for many chronic pain conditions (for example, they are 4-7 times more likely to experience fibromyalgia than men), it’s clear that IC is a condition that affects both men and women.
The impact of this myth is harmful to both men and women. Men often are diagnosed instead with ‘chronic prostatitis’ and given treatment for prostate issues that aren’t the true cause of their symptoms. An IC diagnosis isn’t considered, because ‘IC is a women’s condition’, and men aren’t able to get the help they need. It also affects women, who are still more likely to have their pain and symptoms dismissed by the medical profession, especially when diagnosed with a condition that men ‘aren’t affected by.’
In reality, everyone with IC is different. Some are highly food sensitive, while a small percentage have no discernable food sensitivity at all. Most people are somewhere in between, and sensitive to a small number of common culprits. These include caffeine, coffee, citrus fruits, alcohol, tomatoes, and citrus fruits.
The goal should be to find your personal trigger foods and eliminate them from your diet, while eating healthy.
Try to add something new and healthy to your meals for every trigger food you cut out. An elimination diet – where the common culprits are removed completely and slowly reintroduced – is the best way to identify and eliminate your personal trigger foods.
Because some common trigger foods – citrus fruits and coffee – are acidic, some have jumped to the conclusion that the acid in the food is the reason. They believe that acidic urine is responsible for symptoms, and that by avoiding acidic foods or supplementing with alkaline foods and beverages that symptoms can be reduced.
However, the body doesn’t work this way. The body maintains an extremely stable pH, regardless of what we ingest. The acidity of urine naturally varies throughout the day in order to preserve this healthy pH.
Acid in doesn’t equal acid out. For example, a lemon – one of the most acidic things we can consume – actually ends up making the body more basic once it’s processed.Finally, it’s been disproved that the pH of urine has any influence on symptoms.
There was no difference at all in patients with normal, acidic urine and those who had their urine completely pH neutral.
Unfortunately, this myth can cause patients to limit their diet more than is necessary and avoid healthy foods that they enjoy. Simply find and eliminate your personal trigger foods and eat healthy; it doesn’t have to be more complicated than that.
Often the first treatment prescribed after an IC diagnosis is Elmiron (pentosan polysulfate). Patients are told it’s their best option and it will take 6-12 months to work. It has significant side effects, including GI upset and hair loss, and long-term studies are now reporting that eye damage may result from prolonged use.
Elmiron is only effective for a small fraction of patients – if it’s effective at all. The largest and most recent clinical trial of the drug was halted because it showed no more benefit than a sugar pill. In the studies where it was shown to be better than the placebo, Elmiron only helped 28 – 32% of patients.
A multi-disciplinary approach is always best, and don’t be afraid to try multiple things at the same time.
Far too many patients find themselves suffering with symptoms for months or years as they wait for the long shot of Elmiron working for them.
So many patients with IC are dismissed by the medical community, who suggest their symptoms are all in their head or that they should consult with a psychologist because the doctor ‘can’t find anything wrong.’
IC symptoms are certainly real and physical. If you’re ever dismissed or it’s suggested that you could fix everything by ‘just having a glass of wine’ (yes, our patients have been told that!), find another practitioner!
Like any other chronic pain condition, there is an interplay between physical and emotional health.
Stress can exacerbate pain and symptoms, and chronic pain can actually rewire the brain to expect more pain and become more sensitive to sensations from the pelvic area.
Working to reduce stress, either on your own or with a psychologist, yoga teacher, or mindfulness meditation class can reduce this negative feedback loop and have a positive effect on symptoms.
This is one of the more damaging myths of interstitial cystitis – that we are all waiting for a universal cure for the condition. While we would all hope that there would be a single pill with no side effects or an easy, safe procedure that eliminates symptoms for all patients, that just typically isn’t how medicine works.
Everyone is different, and if there was a simple, bladder-based solution we would have found it decades ago.
Don’t believe all the myths, and make sure you’re finding your information from reputable sources. IC can be painful and frustrating, but don’t believe everything you read! Many well-intentioned groups (or even your doctors) may have incorrect information about the information that is outdated or not rooted in research.
Healing with interstitial cystitis is a journey. While there may not be a quick fix, there is certainly hope. And the result is sustainable once you reach your goals.
Everyone is unique, and there’s no one-size-fits-all ‘cure’, but you can find what is effective for you, working towards being symptom-free with IC.
Nicole Cozean (PT, DPT, WCS) from Pelvic Sanity will be joining us from the USA to run two events in Sydney.
Nicole is extremely talented and knowledgeable and she literally 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. And it’s available in Australia and New Zealand here.
First up on Friday 23 August, Nicole will be talking about pelvic health and the orthopaedic and pelvic physiotherapy connection. This session is perfect for health professionals looking to upskill in pelvic health, learn how to recognise pelvic floor issues and understand what they can do to help their patients.
On Saturday 24 and Sunday 25 August, we have a special workshop specifically for women’s health physiotherapists. In this workshop, Nicole will cover physiotherapy techniques for interstitial cystitis and helping patients with medical management. in Sydney on August 24 and 25. Save the date, tickets coming soon.
More information coming soon on both of these events, in the meantime you can sign up to our email list here to be the first to know when tickets become available.