Interstitial cystitis (IC) was first described in 1887. In 2007, the terms Hypersensitive Bladder Syndrome and Painful Bladder Syndrome were introduced by the Japanese and European urologists with expanded criteria for inclusion. Interstitial cystitis consists of a multitude of symptoms that include bladder pain/discomfort/pressure, urinary urgency, and urinary frequency. Interstitial cystitis affects women, men, and children but is more common in adult women. It is believed that 3 to 6 percent of women have symptoms of Interstitial cystitis ranging from mild to severe. Interstitial cystitis has been linked to other conditions such as IBS (irritable bowel syndrome), migraines, allergies, endometriosis, pelvic floor dysfunction, vulvodynia, CFS (chronic fatigue syndrome), and Sjogrens Syndrome.
There is significant variation among individuals in the frequency, type, and severity of symptoms. Patients can present primarily with pain/pressure symptoms, others have only urinary frequency and urgency, and others have both pain and urinary symptoms.
The pain may be experienced in the lower abdomen, back, vulva, urethra, vagina and/or perineum. Pain with intercourse is also very common. It is not unusual for a patient to remember exactly when her symptoms started. She may report that it felt like a urinary tract infection but the culture was negative. Additionally, the symptoms do not improve quickly with antibiotics. A patient who reports frequent urinary tract infections, that are not substantiated by positive urine cultures, is likely to have Interstitial cystitis instead. There may be a history of problems dating as far back as childhood.
A patient may have memories of being teased by family and friends on road trips for having a “teensy bladder.” Although a patient may experience frequency and urgency, it is not qualitatively the same as the overactive bladder patient. Patients with overactive bladder will feel a sudden urgency that is difficult to defer and are fearful of possible urinary leakage. An Interstitial cystitis patient has frequency and urgency driven by bladder discomfort. Emptying their bladder will typically give them partial or complete relief of bladder pressure. Postponing urination usually aggravates their discomfort. Symptoms during pregnancy vary, depending on the severity of interstitial cystitis. Generally, symptoms for most slightly worsen over the pregnancy with the exception of patients with severe Interstitial cystitis that may see some improvement during the first two trimesters.
The diagnosis of Interstitial cystitis is made primarily on the basis of a detailed history and physical examination.
Completing a bladder diary (log of fluid intake and urinary frequency and volume voided) can help establish the diagnosis. Voiding frequent, small volumes is typical. Urinalysis and culture is obtained during the first visit. Interstitial cystitis is a diagnosis of exclusion, which means it is necessary to rule out other possible causes first.
In 1978, a paper was published that established the presence of glomerulations (pinpoint bleeding spots) after Bladder Hydrodistension (stretching of the bladder with fluid under anesthesia) as pathognomonic for the diagnosis. Over the years, additional evidence has debunked this and it is no longer a criteria for diagnosing interstitial cystitis. In severe cases of interstitial cystitis. Hunner’s ulcers may be observed in 5-10% during cystoscopic evaluation of the bladder. Hunner’s ulcers are not actually ulcers but patches of inflammation and this finding would confirm the diagnosis.
To date, the cause of Interstitial cystitis remains undetermined. It is postulated that the bladder lining (glycoaminoglycan layer) suffers some trauma and is quantitatively or qualitatively damaged. When the GAG layer is damaged, molecules such as potassium are able to penetrate into the deeper layers resulting in muscle and nerve irritation.
A useful analogy is the layers of car paint. When the clear coat of the car paint is damaged, the deeper base and primer coats become exposed to damage from the elements. The most prevalent thought is that Interstitial cystitis patients are not capable of properly repairing the damage to the bladder lining. The reason the damage cannot be repaired properly may have something to do with a protein called antiproliferative factor (APF) found only in the bladders of Interstitial cystitis patients. APF prevents bladder cells from growing and, thus, may interfere with the body’s repair mechanisms.
APF is a urine marker that may soon be available as a useful test to diagnose the condition. Recent research has also shown increased levels of tryptophan (an amino acid) and its metabolite in the blood samples of Interstitial cystitis patients. This finding may open the door to another useful diagnostic marker of the condition. A number of triggers may lead to the development of interstitial cystitis. These include pelvic surgery, urethral catheterization, pelvic floor dysfunction, bladder overdistension, urinary tract infection, autoimmune disorders, pelvic nerve inflammation, and spinal cord injury.
Since the nature of interstitial cystitis is multifactorial, typically multimodality treatment strategies are more effective than single agents alone. Treatments are typically geared to treating the GAG layer abnormalities, neurogenic inflammation and mast cell dysfunction.
An Interstitial cystitis diet typically involves avoidance of caffeinated, carbonated, alcoholic, citrus, artificial sweeteners and spicy foods. The list of dietary substances that trigger flares varies significantly among Interstitial cystitis patients. Each patient needs to identify their unique food triggers and modify their diet accordingly.
Learning to relax the pelvic floor muscles and resist giving in to going to the bathroom frequently can help improve symptoms and bladder capacity. Working together with a specialized women’s pelvic health specialist who is trained in hands-on pelvic floor therapy can make a dramatic difference in symptoms.
Stress is a known trigger of symptoms. Relaxation techniques and meditation can be helpful.
Under general anesthesia, the bladder is distended at a pre-determined pressure and time period. This bladder “stretch” can be helpful in some cases to relieve incalcitrant pain. Additionally, if Hunner’s ulcers are identified, they can be fulgurated (some have injected these areas with steroids). It is common to experience an initial flare that may last 2 weeks or more before any relief is experienced.
This treatment modality is primarily used for patients who have a flare or who do not tolerate or benefit from oral medications. A small catheter is used to place the medication directly into the bladder. It can be administered in the office or the patient can be instructed on home self-administration. Instillations are typically performed one to three times per week for six to eight weeks. If improvement is seen, the interval is reduced to every two weeks, three weeks, four weeks, and eventually discontinued, depending on symptom resolution.
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