Interstitial Cystitis (IC) is also known as Painful Bladder Syndrome (PBS), and the two terms can be used interchangeably. IC is characterized as pain in the bladder for more that six weeks without an obvious infection, and other causes have been ruled out. It is estimated that 12 million people have IC, and women are more commonly diagnosed than men, although some feel that men are often misdiagnosed with prostatitis instead.
Symptoms of IC
Symptoms of IC can be pain (sharp, burning, intermittent, constant) in the bladder, during, before or after urination, pressure in the bladder area or perineum, frequent and urgent urination (even up to 60 times a day), difficulty voiding urine, urinary incontinence, painful sex during or after (even the next day), blood and white blood cells (WBC) in the urine, and a history of chronic UTIs (urinary tract infection). The pain associated with IC can affect the bladder, lower abdomen, legs, low back, vagina, vulva, scrotum and testes, and the pain can be constant, intermittent and can vary in intensity and feeling. Depression and anxiety often come along with IC, as the pain can be quite debilitating and life altering. Many people with IC are unable to stand or sit for long periods of time, will need constant access to a bathroom, and are unable to be intimate with their partners without pain. Because of this, the suicide rate is quite high, as many feel they are falling through the cracks of the health care system, while more information is needed for diagnosis and treatment.
The progression of the illness can vary from person to person. Some are diagnosed at a young age, and some are diagnosed around age 30-40. Many patients of IC feel they have had it their whole lives, while some can pinpoint an event (like a hysterectomy) that caused their symptoms. Some have had chronic UTIs their whole life, while others have never had a UTI. Some cases are so severe that the patient can’t work for needing the bathroom frequently, or because the pain is debilitating, and yet some patients are only mildly irritated. The symptoms can vary dramatically person to person, which makes this illness so complex.
Diagnosis of IC
Diagnosis is made with first ruling out other problems, such as a UTI, bladder cancer and other diseases of the bladder and area. A urologist will do a cystoscope (a camera that goes into the bladder) to view the inside of the bladder to rule out cancer or see if there are any ulcers. Classic IC is when the patient has visible ulcers on their bladder as seen in a cystoscope, and this only happens in 10% of cases. Other cases that do not have visible ulcers are diagnosed by excluding other diseases and using signs and symptoms.
Often those with IC have other symptoms or illnesses. Although some only have problems with their bladder, observation and accounts from patients have drawn links that are not fully understood to the following illnesses: Lupus, Lyme Disease, Irritable Bowl Syndrome (IBS), Endometriosis, Rheumatoid Arthritis, Prostatitis, Chronic Fatigue Syndrome, Fibromyalgia, vulvodynia, prostatitis, headaches and/or migraines, Celiac Disease, Psoriasis, Sjogren’s Syndrome, constipation, Pudendal Neuralgia (PN), Mast Cell Activation Syndrome (MCAS), and allergies and sensitivities.
The exact cause of IC is currently unknown, but there are some theories. Since sufferers can have a wide range of symptoms, pain and other complaints, some suspect there may be more than one illness under the umbrella of IC/PBS, and more studies are needed to fully understand the root cause of what is going on. The theories are as follows:
Gag layer defect: There is a defect in the bladder lining (or GAG layer) causing irritation of the bladder from irritants in the urine.
Embedded infection: That there is a chronic infection embedded into the bladder lining hiding in biofilm (a gooey armour that will protect the infection from antibiotics or antimicrobial herbs), so it won’t show up in traditional urine cultures.
Pelvic Floor Dysfunction: This is caused by muscles in the pelvic floor to be either too loose or too tight causing pain and/or weakness. This can be the root cause of the patients IC, or part of the entire complex. This is diagnosed and treated by visiting a pelvic floor physical therapist.
Mast Cell Activation Syndrome (MCAS): This is where the body’s mast cells are releasing histamine and causing an allergy reaction in the bladder towards certain foods or substances, thereby causing pain and inflammation.
Nerve damage: This can happen after an injury, a surgery to the area (such as hysterectomy) or damage to the discs/nerves in the low back that innervate the bladder.
Autoimmune disease: Since many patients with IC have other autoimmune diseases, many believe that IC is caused by the body’s immune system attacking the bladder, and that there is just a lack of proper testing at this point in time to pinpoint this.
Oxalates: Oxalates are small crystals in foods that some people have issues breaking down. These issues can either be genetic or acquired after an illness or injury. Oxalates are most commonly known to cause kidney stones, but for some, oxalates can just cause pain to muscles, joints, or even the bladder when consumed.
Hormones:Since many women sufferers have increased symptoms with the change in monthly hormones, and some women are relieved of the illness after menopause, many believe that IC is caused by hormone imbalances.
Candida Overgrowth: Candida is a yeast that is naturally in our bodies but can become overgrown in the right situations (including poor diet and antibiotic use). Some patients report a decrease or disappearance in symptoms after treating candida.
Stress: Although stress can make symptoms worse, there are no links between stress as a cause of IC.
Treatment of IC
The treatment for IC can be quite complicated. First, the treating doctor will try to treat symptoms such as pain and urinary frequency. Although there some medications specific to IC, the side effects are severe (such as blindness, hair loss) and only work in 50% of cases. This leaves many patients to try to figure out their illness on their own, without much help after the initial diagnosis. Many patients feel that visits to the emergency room fall on deaf ears, or that their family doctors don’t have the knowledge to help them. This is not the failing of the individual doctor but shows an overall lack of knowledge about this illness and how to treat it.
There is a diet specific to IC, as certain foods can be an irritant to a damaged GAG layer. This diet includes avoiding these foods and taking a pH balancing supplement if they are consumed. The IC diet involves an elimination diet of the foods listed below, and then reintroducing them to see what foods are an issue for that specific person. Everyone is different, and some people are able to consume more than others, and some people have food triggers outside of the traditional IC diet. The IC Diet includes processed meats, carbonated beverages, alcohol, sugar (especially white refined sugar), citrus of any kind, tomatoes, chocolate, coffee, and spicy foods. Some patients report dairy to be an issue, while some report it helps. Some patients report that being a vegetarian helps, while others do better on a keto diet. Certain supplements and herbs can also be a trigger, and many patients report feeling better when consuming pH balanced, filtered water.
Treatment at Ananta Health includes a full history and intake, and then determining the root cause of the illness. The first line is the elimination diet, done under supervision. This can help to mitigate pain while other avenues are explored. There is a strong link between Lyme Disease and IC, but not all cases of IC are Lyme. Testing for Lyme Disease, oxalate toxicity, embedded infections and other triggers can be done on the Biomeridian and are often followed up with urine analysis or blood work. Acupuncture is also extremely helpful to reduce pain and modulate the immune system. After the investigation, treatment of herbs and supplements is then implemented to get the patient back on their feet, out of the bathroom, and leading a better quality of life.