I’ve been at this my whole life. Starting from toddlerhood, I have experienced one painful UTI after the next. I have had some times of dormancy here and there. Sadly, now that I’m in my late 50s, the UTIs are back for what seems like the long term. Through years of bewildering tests, doctors appointments and my own personal research, I’ve learned that this infection that I contracted at age 2 or 3 is likely the same infection that I’m experiencing now - 5 decades later.
A snapshot of the painful procedures and experiences over the years: Age 4: Bladder hydrodistention. (No anesthesia and my mother was not allowed to be in the room with me.)
Age 5: Surgical correction of a urethral stricture (I’ve been told by two urologists that this procedure was likely unnecessary.) Age 18: 13 UTIs in my first semester of college. Yes, 13.
In my 20s: Constant UTIs and peeing blood. Bladder hydrodistention. Five urethral dilations while fully awake and without anesthesia. In my 30s: A blessed dormancy while having children and breastfeeding. I believe I had only one or two infections during this time. In my 40s: The infections started up again causing the need to seek help from a urologist. In my 50s: Constant pain, frequency, sleepless nights. Cystoscopy, bladder instillations. Flew to see Dr. Stewart Bundrick (in Louisiana) who has me on high-dose, long-term antibiotics. A bit better but still struggling daily. Flew to London to get the Uromune vaccine (this has been mildly helpful). My early experiences with urologists resulted in trauma. These experiences also kept me from seeking urological help for twenty years until I was forced to, out of desperation, in my mid-forties. I was so frightened to go to a urologist for fear of yet again more painful procedures, that I scanned each doctor's bio to make certain I would choose someone who seemed to have compassion and understanding. I made the right choice. With my husband at my side, I sat in her office crying. I could barely speak but needed help. She didn’t have a lot of answers, but walked by my side for four years until I was brave enough to have a cystoscopy. Everything appeared “normal” so I went on suffering with intermittent antibiotics for many years until the infections just wouldn’t go away, ever. I then turned to the help of Dr. Stewart Bundrick. I am under his care now. He deals with the most difficult cases and is tremendously compassionate. You may ask about alternative treatments, diet, etc. I have tried everything. Homeopathy, Uromune vaccine, estradiol, acupuncture, pelvic floor therapy, D-mannose, the IC diet, special tinctures, supplements, etc, etc. What I’ve come to learn through years of personal research, is that the bacteria is no longer floating around in my urine. It has gone into stealth mode and has taken up residence in the lining of my bladder wall. The bacteria is very cunning. It has set up communities to protect itself (called intracellular bacterial communities) and gone a step further by creating biofilms that act as a slimy bodyguard for the bacteria so that it can live on indefinitely. I have developed a small acceptance of this way of life. It is certainly not my preference but it does create a deep humility about chronic illness. With this new alliance, the UTI Health Alliance, I hope to bring together women, professionals, and experts in fields that will help to bring the suffering UTIs cause to light, raise funds for much needed research and create an acceptance of UTIs as a topic to be talked about and not ashamed of.