IC/PBS is a very distressing, non-infectious condition, that can severely affect quality of life in both men and women. IC has traditionally been seen as a female condition but the same symptoms occur in men, hence the newer, and more appropriate term, Painful Bladder Syndrome.
The hallmark symptoms of IC/PBS are urinary urgency/frequency including nocturia (needing to get up during the night to urinate) and pain perceived to be related to the bladder, and are present for at least 6 weeks.2 Usually there is increasing pain or pressure as the bladder fills, easing with emptying the bladder upon urination. Often the easing of pain or pressure is very temporary.
Note that pain may also be experienced in the suprapubic region, lower abdomen or pelvis, urethra, or rectum. Over time, if the pelvic floor muscles get tighter and tighter, pain can develop with intercourse (or dyspareunia), or pain on ejaculation in men.
Who gets it?
IC/PBS can develop anywhere between the ages of 12 and 97.3 Although it seems to be more prevalent in women, this may be more a result of misdiagnosis in men given that the symptoms of Chronic Pelvic Pain Syndrome or Chronic Non-bacterial Prostatitis overlap with IC/PBS.
How do I know if I have it?
A urologist or urogynecologist is the type of specialist who can make the diagnosis of IC/PBS. First of all, other conditions have to be ruled out, which include urinary tract infections or UTI’s (i.e. bladder infections, and/or kidney infections), kidney or bladder stones, herpes, cancer, radiation cystitis from radiation therapy, and vaginitis. Urethral syndrome is a related condition to IC/PBS, the difference being that nocturia is absent. There are some experts who feel that urethral syndrome can progress to IC/PBS.
The tests used to rule out these other conditions include blood tests, urinalysis and culture, and ultrasound for post-void residual volume testing. These tests plus the history, symptoms, and physical examination are often all that is needed to make a diagnosis.
In some cases added tests are performed, including cystoscopy and bladder biopsy. Cystoscopies are very good for ruling out bladder stones, foreign bodies, urethral diverticula, and cancer; they can also reveal bladder scarring and, if hydrodistension is used, the presence or absence of glomerulations or Hunner’s ulcers. Glomerulations are pinpoint bladder hemorrhages or petechiae in the walls of the bladder. They may be seen in approximately 90% of IC/PBS patients but they are also present in people without IC/PBS and as such, are no longer considered diagnostic for it. Hunner’s ulcers are areas of inflammation in the bladder wall and are considered a “classic” sign of IC/PBS but occur only in 10-15% of people with IC/PBS. Because glomerulations are present in those with and without IC/PBS and Hunner’s lesions are infrequent, neither are required for a diagnosis of IC/PBS to be made. A bladder biopsy may be done to rule out bladder cancer, and to possibly show the presence of mast cells, markers of an inflammatory process.
In some cases something called a bladder or intravesical lidocaine instillation may be done to determine if the source of pain is the bladder or somewhere else.
What can complicate the picture is that IC/PBS can co-exist with other conditions such as Endometriosis, Chronic Pelvic Pain Syndrome, Overactive Bladder syndrome, and Vulvadynia; this is why it is so important to see a specialist and be tested as indicated by your symptoms and history.
What causes IC/PBS?
No one knows for sure. It seems that some symptoms of IC/PBS may be due to defects in the lining of the bladder, called the glycosaminoglycan or GAG layer, allowing irritants in the urine to leak into the bladder tissue and cause pain. Some studies have shown increased mast cells in the bladder walls, suggesting an increased immune response as well as an increased inflammatory response which could result in further injury to the GAG layer. Also, individuals with IC/PBS have been found to have increased numbers of nerve fibers reflecting heightened sensitivity and possibly neurogenic inflammation. 1,2
How this all gets started is what is still unclear. Possibly an injury to the bladder, such as that from recurrent urinary tract infections, is what initiates some damage to the bladder, causing an inflammatory response that becomes self-perpetuating. No matter what the cause is, the results involve a neuroimmune cascade of events that result in the main symptoms if IC/PBS.1
What do I do about it?
Initial treatment has to include medical treatment, diet changes, and lifestyle changes.
1. Medical treatment will depend on the severity of symptoms and can involve different medication trials to see what works best for each individual. It typically includes some form of painkiller (eg. anti-inflammatories); often a drug called pentosan polysulphate sodium, also known as Elmiron, is prescribed to create a protective lining for the bladder and possibly also provide an anti-inflammatory effect. As well, medications that modulate neuropathic pain may be added; amytriptylline (Elavil) is one such drug which is used in low doses for this effect. 2,3
2. Dietary changes address two key areas: healthy bowel function, and food and beverages that may irritate and inflame the bladder lining. Healthy bowel function is important to prevent extra pressure from constipation on the bladder and pelvic floor; in cases of irritable bowel syndrome, naturopathic treatment may be useful to reduce gut irritation, bloat, and diarrhea. The types of foods and beverages that often exacerbate IC/PBS symptoms are acidic and/or spicy foods, and caffeinated or carbonated beverages. The IC Network has a comprehensive list on its website.
3. Lifestyle changes include stress reduction, relaxation training such as mindfulness-based meditation, and regular exercise; counselling may also be helpful in coping with the emotional and psychological stresses associated with this condition.
What is the role of a pelvic floor physiotherapist for IC/PBS?
Because the pelvic floor muscles have an intimate relationship with the bladder, they often become chronically tight and painful in reaction to bladder pain. This pelvic floor dysfunction can manifest in women as burning pain at the vaginal opening, known as vulvodynia, and/or as pain with intercourse, known as dyspareunia; in men there can be penile pain, or pain with or after ejaculation. In both men and women, it can be felt as rectal pain, or as perineal pain (pain in the area between the anus and vaginal opening/base of the penis). Pain in any of these areas can feedback onto the bladder pain such that they amplify each other.
Pelvic floor physiotherapists are specially trained physiotherapists who assess and directly treat the muscles of the pelvic floor, both externally and internally via the vagina and/or rectum. As well, we assess and treat and dysfunctions in the pelvic and spinal joints that may impact the bladder and pelvic floor musculature. Some of us use biofeedback to help retrain these muscles to function more normally.
1. Butrick CW, Howard FM, & Sand, PK. "Diagnosis and treatment of Interstitial Cystitis/Painful Bladder Syndrome: a review." Journal of Women's Health 19.6 (2010): 1185-1193.
2. Hanno PM, Burks DA, Clemens JQ, Dmochowski RR, Erickson D, Fitzgerald MP, Forrest JB, Gordon B, Gray M, Mayer RD, Newman D, Nyberg L Jr, Payne CK, Wesselman U, Faraday MM. "AUA guideline for the diagnosis and treatment of Interstitial Cystitis/Painful Bladder Syndrome." Journal of Urology 185.6 (2011): 2162-2170.
3. Osborne JH. "Dr. Gregory Davis: IC, endometriosis and gall bladder disease." The IC Optimist Spring 2013: 15-17.
4. Meijlink JM. Interstitial Cystitis: Diagnosis & Treatment, and overview. International Painful Bladder Foundation. Rotterdam: IPBF, 2013.
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