DEAR DR. GOTT: My 38-year-old female friend desperately needs your help. She suffers from interstitial cystitis for which no doctor has been able to control this disease or the severe pain caused by it. She’s been suffering from this since she was seven years old and her health has been deteriorating rapidly to the point of becoming suicidal. Please help with any advice.
DEAR READER: Interstitial cystitis (IC), also known as painful bladder syndrome, is a chronic condition that affects the lining of the bladder. It is sometimes likened to road rash on the inside of the bladder.
Women are most commonly affected, although men and children may experience the condition as well. It is typically diagnosed in those 40 or older and may be associated with chronic pain syndromes such as IBS or fibromyalgia. Symptoms range from mild to severe and may fluctuate, or even go into periodic remission. For some, it may have long-lasting adverse effects on the quality of life. There is no cure and treatment doesn’t reliably eliminate symptoms; however, there are a variety of medications and therapies that may offer relief.
Symptoms can include bladder or pelvic pressure or discomfort, chronic pelvic pain, persistent/urgent need to urinate, pain during intercourse, and perineal pain. Those with severe IC may experience frequent urination, sometimes urinating only a small amount as many as 60 times a day.
IC symptoms are often initially thought to be caused by a urinary tract infection (UTI); however, testing usually reveals no bacteria. Symptoms may escalate if an UTI is present and may lessen but not disappear following successful treatment. If IC is suspected, a pelvic exam, potassium sensitivity test, urinalysis, cystoscopy, and biopsy may be recommended to confirm or rule out the diagnosis.
Complications can include a diminished quality of life due to symptoms affecting social activities, work and other daily activities; a reduced bladder capacity due to stiffening of the lining; and relationship and emotional problems due to painful intercourse, stress and depression. (IC can lead to depression, but preexisting depression and anxiety disorder can also worsen IC symptoms.)
Treatment can be difficult as many individuals may need to try several options before finding one or a combination that helps relieve some of the associated symptoms. Oral medications can include non-steroidal anti-inflammatory drugs (such as ibuprofen and naproxen), tricyclic antidepressants, antihistamines, and pentosan (the only FDA-approved IC medication). Nerve stimulation may be beneficial for some sufferers. This works by innervating the sacral nerves which is believed to relieve pain and lessen urinary frequency by strengthening bladder muscles and increasing blood flow to the area. Bladder distention works by stretching the organ and can be used as a treatment option if initial results prove positive and long-lasting. Some people may find relief by having dimethyl sulfoxide (DMSO) placed directly into the bladder. The medication which may be combined with others is allowed to remain in the bladder for 15 minutes before being expelled through urination. This may be done once a week for six or eight weeks and then follows a maintenance schedule of once every two or three weeks for a year. A final treatment option is surgery; this is a true last resort and is rarely used because is does not eliminate the associated pain of IC and can carry several complications.
There are changes and steps that can be done at home, regardless of what type of treatment is used. Wear loose clothing that doesn’t squeeze or put pressure on the abdomen. Reduce stress. Quit smoking. Remember to exercise, especially easy stretching and pelvic floor workouts. Make dietary changes which involves identifying and removing triggers and irritating foods. Those foods most commonly found to be problematic are known as the four Cs and include carbonated beverages, caffeine (to include chocolate), citrus and foods high in vitamin C. Other food/beverage culprits include tomatoes, pickled foods, spices, alcohol, and artificial sweeteners. Bladder training is also important. This is done by setting a schedule for urinating. Begin with short intervals, such as every 30 minutes (even if you don’t feel the urge) and slowly increase the amount of time between bathroom trips. This may be helped by learning to control the urge with relaxation techniques or distraction.
Acupuncture and guided imagery have both shown promise in treating IC. Acupuncture is fairly commonplace in today’s society and involves the placing of very thin needles at strategic areas of the body, depending on the desired effect. Guided imagery uses visualization and suggestion to mentally visualize healing which, in some cases, can cause the body to actually begin to heal itself. Pelvic physical therapy may help some sufferers. Special training in this therapy is required. Those qualified can be found through the American Physical Therapy Association.
Because your lady friend has severe symptoms and has been suffering since childhood, I recommend she seek out the advice of a specialist familiar with the treatment of severe IC. She may benefit from a teaching hospital or clinic such as the Mayo Clinic or the Cleveland Clinic. She should also seek out a support group. She can find one near her or online through the Interstitial Cystitis Assocation.
Readers who are interested in learning more about related topics can order my Health Report “Bladder and Urinary Tract Infections” by sending a self-addressed, stamped number 10 envelope and a $2 US check or money order to Dr. Peter Gott, PO Box 433, Lakeville, CT 06039. Be sure to mention the title when writing or print an order form from my website, www.AskDrGottMD.com.