Interstitial Cystitis 101
As with many of the disorders that we experience, interstitial cystitis can be a condition that is influenced by many contributing factors, including dysfunctions involving whole body or systemic situations. Understanding IC doesn’t always come down to a cut and dry, single-phase diagnosis, but includes an examination of internal and external conditions that may be part of the root causes.
What is IC?
Interstitial cystitis is a pain disorder of the bladder that has a number of specific characterized symptoms. This condition often coexists with other chronic pain syndromes including irritable bowel syndrome (IBS) and fibromyalgia. IC is also known as PBS (painful bladder syndrome) and BPS (bladder pain syndrome). IC affects millions of people but is most common among women with an average starting time of around forty years of age. There are varying levels of IC that also include Hunner’s ulcers, which affect 5-10% of IC patients.
What are the Symptoms of IC?
The average sufferer of interstitial cystitis reports symptoms that can include but are not limited to: chronic pain in the bladder, bladder spasms, bladder pressure, lower back pain, general bladder area discomfort, abdominal pain, pain as the bladder is filling, pelvic pain, frequent need to urinate – some report 40-60 times per day; small quantities of voidance during urination, and Hunner’s ulcers/inflammation on the wall of the bladder. Symptoms are characterized by lasting up to 6 months, recurring; with the worst cases lasting two years or longer causing intense pain, hardening of the bladder with low volume capacity. Pain levels in IC sufferers range from sporadic to chronic as well as flare-ups of light to extreme pain that lasts from a few hours to ten days or longer.
Myofascial and Neuralgia are two additional forms of BPS that have pelvic floor tension due to a variety of causes. These patients experience trigger points in the pelvis, back and hips, and abdomen that can cause severe symptoms when touched and the pain experience is not usually bladder-associated. The patient may or may not have voiding problems and seem to have reduced symptoms during sleep when muscles are relaxed.
IC Sub-types: Ulcerative and Non-Ulcerative
Interstitial cystitis is a difficult condition to nail down due to the fact that patients often have varying symptoms. There are a number of sub-types of IC that are referred to as phenotypes, with the most prevalent descriptions of ulcerative and non-ulcerative. NIDDK, a part of the National Institutes of Health supported a research program that was involved in phenotyping initiative called the MAPP Research Network.
Non-ulcerative is the most common type of IC and it is estimated that around 90% of patients fall into this category. Non-ulcerative IC typically has “glomerulations” which are pinpoint hemorrhages in the wall of the bladder. It should be noted that glomerulations can occur with a variety of bladder inflammation situations and are not solely specific to IC.
Ulcerative IC includes those patients with Hunner’s ulcers. These are patches that are red and often bleeding areas of the bladder wall.
What Causes IC?
Similar to other pain syndromes such as fibromyalgia, the cause of IC is poorly understood. Researchers are continuing to investigate the causes that result in IC, but it’s thought that there are a variety of contributing situations instead of a single problem. These conditions can include physical bladder trauma, recurring UTI’s (urinary tract infections), genetic predisposition, allergies- including food allergies, sensitivity to foods, environmental sensitivities, exposure to some toxic environmental agents, intestinal permeability, infectious organisms, hyperthyroidism, neurological damage, pelvic floor dysfunction, neurogenic inflammation, liver dysfunction, toxicity, and bladder mastocytosis.
Patients may experience a few, some or all of these conditions and, over time, they create the IC “perfect storm.”
How to Get IC Diagnosed
Interstitial cystitis is defined as chronic bladder pain lasting more than 6 weeks in the absence of an identifiable cause or infection. Thus, the diagnosis is one of exclusion, meaning it is essential to first rule out other causes of the symptoms. Diagnosis will include an evaluation of the patient’s history, symptoms, physical exam findings, and medical tests.
There is no single test that can diagnose the condition. Urinalysis with microscopy, urine culture, and post-void residual are essential tests to exclude other conditions. Other tests may include cystoscopy, hydrodistention, bladder biopsy, and potassium sensitivity testing but are not necessary for diagnosis of IC.
Due to the fact that misdiagnosis has been more common over the years, TAU, Translational Andration and Urology, has accomplished a study of both IC symptoms and diagnosis. It appears that the misdiagnosis in early onset has been with a combination of conditions that are viewed individually. These include: urinary tract infections, yeast infections, endometriosis, and vulvodynia. Additional symptoms that are used for diagnosis may be a review of whether the patient experiences pain during sexual activity or if the activity causes a flare up, if the condition worsens pre, post and during a menstrual cycle, and if there are any first degree relatives that have had symptoms that are similar. A simple urine test can determine if there is a urinary tract infection. However, physicians approach this as a single treatment, even when the results for a UTI are negative.
Another area that is examined for diagnosis is whether there is pain during voiding, however, this cannot be used as a “catchall” as only 43% of patients report this as a symptom. A greater number of patients report CPP (chronic pelvic pain) that is sourced at the bladder. Physical exam findings are also not required for diagnosis, but common findings include widespread tenderness of the pelvic region and/or urethra. The characteristics of patient’s pain varies greatly, but the most consistent presentation is increased pain with bladder filling and relief upon voiding.
A full diagnosis involves looking at all factors and the patient should be seeing a primary doctor, gynecologist (for females), and urologist. Your primary care physician may refer you to a urologist or urogynecologist or gynecologist to run the appropriate tests and make the final diagnosis. The conventional treatment goal for diagnosed interstitial cystitis or bladder pain syndrome is to provide symptomatic relief.
Taking a whole body approach often requires the addition of a naturopathic doctor, nutritionist, physical therapist, or other providers specializing in integrative or functional medicine, who can coordinate analysis and offer additional insight for an IC diagnosis and other contributing factors. For more information, please see our Services page, and we will gladly assist you in figuring out the best course of action to take so that you can achieve optimal health.