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Patient stories    
 

Fourteen years ago, when I was 37 years old, following a series of investigations I was finally diagnosed as having Sjögren’s syndrome. After years of problems with eye irritation, dry mouth and fatigue, the diagnosis came as a huge relief. This relief was short-lived however.

Following an abdominal hysterectomy, I developed a number of new problems: pain in the bladder that worsened when the bladder was full, a constant painful sensation of urgency and frequent urination (including at night), pelvic pain that sometimes extended into my back, groin or side and stabbing pain in the vagina.

The symptoms eventually became chronic with frequent, recurrent cystitis symptoms.

The urine cultures were negative and my internist-immunologist referred me to a urologist, asking whether there was any possibility that I might have interstitial cystitis. After the urologist had looked inside my bladder and done a biopsy, I did indeed receive the diagnosis of interstitial cystitis. Treatment at that time consisted of hydrodistension under anaesthetic and low dose prednisone, but the symptoms continued.

 

A year ago, I had regular swelling of my left parotid gland (large salivary gland), accompanied by a great deal of pain and fever. My internist-immunologist suspected that this was probably a bacterial infection caused by damage to the salivary gland ducts as a result of the Sjögren’s syndrome and disrupted flow of thick saliva. I was prescribed an antibiotic, doxycycline 100 mg a day for 30 days. Within a few days the swelling, pain and fever had subsided. It occurred again a few times but each time I immediately took doxycycline.  

What I particularly noticed was that following the periodic use of doxycycline, my bladder symptoms first considerably improved and then actually disappeared completely.

It is almost 7 years later and I have had no further bladder symptoms. Despite the fact that no bacteria were found in my urine, my bladder problem seems to have been cured by the antibiotic doxycyline.

 
Ingrid Toornman-Leunissen
August 2004, updated September 2009
       
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