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Date of last update: 8/13/2017.

Forum Name: Urinary tract infections

Question: Possible inflammatory bladder disease in lupus patient

 ckbruce - Tue Feb 22, 2005 2:43 pm

I am married and have been sexually active with only my husband for the last 5 and a half years. But in the past year I have had the symptoms of UTIs sometimes as many as 3 times a month. I usually use over the counter meds because of the frequency. Usually Uristat or Cystex. Also try to drink alot of water and cranberry juice. The problem is when I do go to the doctor and am tested it says I do not have a UTI. I have been referred to a urologist to see if I have inflammatory bladder disease.

These symptoms happen almost every week for 1-3 days at a time and then after over the counter treatment they get a little better. Never completely better. I have had blood in my urine, I get horrible stomach cramps, frequency, urgency, burning, and aching in my vaginal area. I sit with a hot water bottle between my legs to help the aching.

I follow all of the preventative guidelines. Wiping front to back, wearing loose, cotton clothing, urinating before and after sex and keeping clean with a sensitive skin, no dyes or perfumes vaginal wash.

These are very much hindering my life. I miss work because of them. My husband is beginning to think I am allergic to him. Is there anything else this could be? I am told that this could have nothing to do with my lupus even though lupus is an inflammatory disease. My kidneys have been checked and though I have protein in my urine, my tests have shown no decrease in kidney function.

Any advice is appreciated.
 Kathy C, RN - Sun Feb 27, 2005 3:35 pm

Hi CK,
You may have something called interstitial cystitis. My sister had the same symptoms that you describe but even with antibiotics it kept coming back.

Interstitial cystitis (IC), one of the chronic pelvic pain disorders, is a condition resulting in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms of IC vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate (urgency), frequent need to urinate (frequency), or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women's symptoms often get worse during menstruation.

In IC, the bladder wall may be irritated and become scarred or stiff. Glomerulations (pinpoint bleeding caused by recurrent irritation) may appear on the bladder wall. Some people with IC find that their bladders cannot hold much urine, which increases the frequency of urination. Frequency, however, is not always specifically related to bladder size; many people with severe frequency have normal bladder capacity. People with severe cases of IC may urinate as many as 60 times a day.

Also, people with IC often experience pain during sexual intercourse. IC is far more common in women than in men. Of the more than 700,000 Americans estimated to have IC, 90 percent are women

What causes IC?
Some of the symptoms of IC resemble those of bacterial infection, but medical tests reveal no organisms in the urine of patients with IC. Furthermore, patients with IC do not respond to antibiotic therapy. Researchers are working to understand the causes of IC and to find effective treatments.

One theory being studied is that IC is an autoimmune response following a bladder infection. Another theory is that a bacterium may be present in bladder cells but not detectable through routine urine tests. Some scientists have suggested that certain substances in urine may be irritating to people with IC, but no substance unique to people with IC has as yet been isolated. Researchers are beginning to explore the possibility that heredity may play a part in some forms of IC. In a few cases, IC has affected a mother and a daughter or two sisters, but it does not commonly run in families. No gene has yet been implicated as a cause.

How is IC diagnosed?
Because symptoms are similar to those of other disorders of the urinary system and because there is no definitive test to identify IC, doctors must rule out other conditions before considering a diagnosis of IC. Among these disorders are urinary tract or vaginal infections, bladder cancer, bladder inflammation or infection caused by radiation to the pelvic area, eosinophilic and tuberculous cystitis, kidney stones, endometriosis, neurological disorders, sexually transmitted diseases, low-count bacteria in the urine, and, in men, chronic bacterial and nonbacterial prostatitis.

The diagnosis of IC in the general population is based on

Pinpoint bleeding on the bladder wall
presence of urgency, frequency, or pelvic/bladder pain

cystoscopic evidence (under anesthesia) of bladder wall inflammation, including Hunner's ulcers or glomerulations (present in 90 percent of patients with IC)

absence of other diseases that could cause the symptoms

Diagnostic tests that help identify other conditions include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, distention of the bladder under anesthesia, urine cytology, and, in men, laboratory examination of prostate secretions.

Urinalysis and Urine Culture
These tests can detect and identify the most common organisms that infect the urine and that may cause symptoms similar to IC. However, organisms such as Chlamydia cannot be detected with these tests, so a negative culture does not rule out all types of infection. A urine sample is obtained either by catheterization or by the "clean catch" method. For a clean catch, the patient washes the genital area before collecting urine "midstream" in a sterile container. White and red blood cells and bacteria in the urine may indicate an infection of the urinary tract, which can be treated with an antibiotic. If urine is sterile for weeks or months while symptoms persist, the doctor may consider a diagnosis of IC.

I hope this helps and I wish you luck......

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