By Tucker Kueny, MD
Marjorie is 42 years old, and she recently came for her annual check up. She was also very concerned because over the last few years she stated that she has had many urinary tract infections. Over and over again, she was treated with antibiotics, but the urine cultures were always negative, and she never really got better. Now the pain in her lower abdomen is stronger, and never really goes away. She also urinates every few hours and sometimes only a little bit comes out. She is feeling very worried and frustrated, and it is affecting her marriage because sex has also become uncomfortable.
Marjorie has the classic symptoms of interstitial cystitis. This is a chronic inflammation of the bladder wall, which may cause symptoms of pelvic pain, urinary frequency, and pain with intercourse. These symptoms may be persistent, or they may be triggered by the menstrual cycle, stress, long periods of sitting, or sexual intercourse. It is a frustrating illness, because it is often misdiagnosed as a urinary tract infection. While interstitial cystitis often goes undiagnosed, more than 1% of women may have it.
To diagnose interstitial cystitis, the provider may ask the woman to keep a diary of when she urinates and feels pain. She may also fill out a Pelvic Pain and Urgency/Frequency Symptom Scale. This helps to understand the severity of her symptoms. A complete pelvic exam and a urinalysis with culture help to rule out other causes of her pain. Sometimes questions and a physical exam can give enough information to diagnose the condition. Other times a simple office test called the potassium sensitivity test is used to diagnose interstitial cystitis. During this test the provider instills water or a potassium solution into the bladder, and the woman rates the pain and urgency that she feels with each. Occasionally further testing may include cystoscopy (looking inside the bladder with a small scope) or biopsy depending on her presenting symptoms. These tests, however often are not necessary.
While there is not one single treatment that cures 100% of women, there are many different options that can be offered. Some women have to try various treatments until they find one that relieves their symptoms. To begin there are simple changes a woman can make in her life style that can help. Loose clothing, pelvic floor exercises, smoking cessation, stress reduction and an exercise routine may all help. There is also a specific diet that helps control symptoms and flare-ups. This diet avoids foods and beverages that are high in acid, potassium, caffeine, or alcohol.
The provider may also prescribe medications that help with the pain, relax the bladder, or decrease the frequency of urination. The only medication approved by the FDA specifically for interstitial cystitis is Pentosan (Brand name is Elmiron). It is uncertain how it specifically works, but it likely helps to heal the bladder wall. It may take up to two months for the medication to improve the symptoms, but many women find improvement much sooner. Another treatment option is using a catheter, or tube, to put medications directly into the bladder. Rarely, physicians offer surgery when these other methods do not work.
It is difficult to live with interstitial cystitis, and coping with chronic pain can lead to stress, depression, and difficulty in relationships. It is important to get adequate support, and have lots of patience while searching for the right treatment. Because this condition is often difficult to diagnose, it is important for women to seek out care from a professional if they have symptoms of a urinary tract infection that do not improve with the usual treatment. More information can be obtained form your health care provider or online at http://www.ichelp.org.
Cooley Dickinson Hospital • 30 Locust St. (Route 9), Northampton, Mass. • (413) 582-2000
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