Interstitial Cystitis (IC), also called Painful Bladder Syndrome (PBS), is linked to dyspareunia (pain with intercourse) and is thought of as contributing to long term female sexual dysfunction. Interstitial cystitis is the most therapeutically frustrating condition of the urinary tract.
Patients describe IC/PBS as pelvic pain, pressure, or discomfort related to the bladder, typically associated with a persistent urge to void, or urinary frequency, without the presence of infection or other medical reason. We also know that the prevalence of IC/PBS is underestimated and we are just getting a grasp on the magnitude of compromised mental health and quality of life it causes.
It’s hard to judge, but it appears to impact 30-300 per 100,000 population; however, this statistic may grossly underestimate the frequency of the disorder given the variability of how IC/PBS is diagnosed, characterized and identified.
One problem is that IC/PBS is frequently confused with endometriosis, recurrent urinary tract infections, overactive bladder, irritable bowel syndrome, generalized vulvodynia, and vestibulodynia. The female to male ratio of people diagnosed with interstitial cystitis is approximately 10:1.
IC/PBS and sexual dysfunction
Recent reports of IC/PBS have now started including the problem of pain with intercourse and that, often, is on the list of symptoms woman share with their gynecologist or other health care provider.
The inclusion of dyspareunia, secondary to underlying bladder issues, has not traditionally been recognized, and to date has not been widely addressed in studies. In fact, pelvic pain of bladder origin continues to be widely diagnosed as a gynecologic issue, often as endometriosis, generalized vulvodynia, or vestibulodynia. While these entities individually may be a source of dyspareunia, they also may co-exist with IC/PBS. Pelvic floor dysfunction, a condition of spasm of the pelvic floor muscle, is a common source of sexual pain during or after sexual relations. Pelvic floor dysfunction accompanies IC/PBS in 75 percent of patients.
What causes it?
The cause of interstitial cystitis is still a basic mystery, which has resulted in debate as to what characterizes the disorder. It has become clear that IC is a condition with many possible causes. The components of this illness act in combination to cause the symptoms of IC.
It is likely that structure of the bladder, neurologic, immunologic, genetic, infectious, environmental, dietary, and psychological factors all play a role in IC. The most commonly accepted assumption focuses on an abnormality of bladder mucosa. Normally the lining of the bladder is protected by a layer of mucosa, called the glycosaminoglycan (GAG) layer, which prevents penetration by toxic substances. If the bladder is subject to repeated injury, the GAG layer can become damaged and more permeable.
This increased permeability permits potassium to leak through the bladder lining and causes irritation of the underlying nerves resulting in pain and inflammation. Then certain cells are activated which leads to the release of histamine and other inflammatory agents that cause increasing pain and tissue damage. Thus, there is further breaking down of the GAG layer leading to a vicious cycle of pain and inflammation.
Cystoscopy with hydrodistention is a useful diagnostic tool but is not required when making the diagnosis of IC/PBS. A cystoscopy with hydrodistention may be done under anesthesia to confirm a diagnosis of IC. This involves stretching the bladder with fluid, allowing your physician to see changes that are typical of IC. Some of these changes include the presence of glomerulations (pinpoint hemorrhages that occur on the bladder wall, and are seen in 95 percent of IC patients), or Hunner’s ulcers, which may be present in a small minority.
A range of therapeutic interventions, including pharmacologic solutions, are recommended for the management of IC/PBS. Initial treatment should include patient education and behavior modification. Voiding diaries examine frequency, volume of voided urine, time of urination, and associated symptoms and may help to identify foods and behaviors that cause an exacerbation of symptoms.
With the complexity of interstitial cystitis, a multifaceted medical treatment regimen is recommended in targeting various pathophysiologic (the functional changes associated with or resulting from disease or injury) aspects of the disorder. Current pharmacologic treatment recommendations include several concurrent treatments, each addressing different disease mechanisms. In addition, there is evidence that early recognition and treatment of IC/PBS leads to a more rapid relief of symptoms.
As with other chronic regional pain syndromes, a multidisciplinary approach to the treatment of IC/PBS is necessary. Pelvic floor physical therapy or biofeedback can be used to address the pelvic floor muscle dysfunction that frequently accompanies IC/PBS. Some patients may benefit from cognitive behavior therapy and sex therapy to treat concurrent anxiety, depression and sexual dysfunction. Additional therapies include sacral neuromodulation (neuromodulation is defined as the therapeutic alteration of activity in the central, peripheral or autonomic nervous systems, electrically or pharmacologically by means of implanted devices) and Botulism toxin type A injections and hydrodistention may be useful in some patients.