After 8 Years of Recurrent, Severe UTIs: A Young Woman Knows the Cause
Imagine life as a vibrant college sophomore – you’re making new friends, experiencing a fresh dating pool, enjoying life’s most fun and silly moments with, best of all, a newfound freedom from parents. Now imagine one day experiencing pain in the pelvis so great, you can barely sit down – a pain that won’t go away.
Sierra was a healthy, 19-year-old sophomore in college when she first started to experience severe pain in her pelvis. She described it as “constantly sitting on pins and needles,” the sudden pain so severe it even made walking difficult. “I was 19 years old, going into my sophomore year and the pain just hit me one day. I couldn’t wear tight fitting clothing, walking was difficult,” the now 26-year-old described.
“I didn’t know how to tell my friends what was going on. I feel like I missed out on the college life experience, the only person I told was my best friend and I wouldn’t make plans or go out on dates.”
Sadly, Sierra is not alone.
According to a study published in 2019, recurrent UTIs in younger women are marked with feelings of anxiety, depression, and shame. In Sierra’s case, she visited gynecologist and when her UTI test (traditional urine culture dipstick) came back negative, she assumed she had a sexually transmitted infection. “I kept having my doctor test me for every STI.” Desperate for relief, she was prescribed 15 different types of medications and antibiotics, steroids, and fluconazole (which is used to treat common yeast infections) over the course of a year. With no improvement, she was referred to another physician and she was diagnosed with vulvodynia, a chronic pelvic pain condition with no known cause or cure.
Her treatment with this new diagnosis included pelvic floor physical therapy and swapping out a water bottle for toilet paper (to keep germs at bay), all of which did nothing to provide relief from the constant pain. Impressively, Sierra finished college, got a professional job in the medical industry, and started seeing a new urologist in her hometown.
Armed with more information from her experience in the medical tech field and sheer persistence in seeking treatment, she estimates that she visited her new hometown Urologist 10 times in just 6 months. During this time, she provided more urine cultures (standard UTI tests) and also underwent a CT scan and cystoscopy, all which came back normal. As a result, her diagnosis was changed from vulvodynia to interstitial cystitis, another condition with no known cause or cure.
Frustratingly, she remembers her urologist making notes that her symptoms were “subclinical,” a medical term defined as the disease not having severe enough symptoms to present a definitive diagnosis. Meaning, her reported pain, so severe she described as rating a 15 out of 10 scale, was not enough to try additional treatment methods.
Sierra continued to seek action.
She discovered an online support group on Facebook filled with patients with the same story: years of painful UTIs, normal urine cultures, and no relief. But she also began to read recurring stories from the group that all shared a similar path – a misdiagnosis of IC, undergoing advanced UTI testing, and a correct diagnosis chronic embedded infection within the bladder. Chronic embedded bladder infections (or chronic UTIs) are the result of a bacterial biofilm embedded within the bladder walls that are resistant to antibiotics and frequently do not show up on dipstick or standard culture UTI tests.
When unsuccessfully advocating for advanced UTI diagnostic testing with her current Urologist, she traveled out of state to see a new Urologist many patients in the group recommended, Dr. W. Stewart Bundrick, Jr of Ark-La-Tex Urology Group.
After 8 years of no answers, Sierra received her results; she was diagnosed with a chronic embedded infection, the result of a bacterial biofilm, within her bladder. She has high levels of E-coli. bacteria in her bladder which are resistant to the standard antibiotics prescribed for a UTI and resulted in many urinary analysis tests coming up negative for an infection. She was amazed and grateful to finally have a definitive diagnosis so she could begin a new treatment path: “After years of being told that my issue was ‘subclinical’, it was a relief but also frustrating to have gone through so much.”
Now, 6 months after receiving her test results, Sierra reports that she found an antibiotic treatment plan which finally brought about some relief, feeling about 60% better. Recently, she started seeing a functional medicine doctor and following some holistic and dietary changes, and she reports feeling 90% better.
Sierra now shares her own experience in order to help those with similar concerns in the virtual support group on Facebook. Sierra’s persistence and ability to advocate for herself was her strength and what led her to eventual relief from the chronic pain. She continued to advocate for herself “in the face of no” from two gynecologists, two urologist, countless clinicians at urgent care centers, doctors and nurses during an ER visit and a physical therapist. READ MORE: On the doctor dance, a frustrating experience for many with UTIs.
“I missed work plus paid a bunch of high co-pays, all to get someone to listen and work with me. But it’s really not fair, who really can afford to take off work and leave in the middle of the day and afford copays all to exhaust a doctor? I’m really fortunate.”
Advanced testing for recurrent UTIs can be accessible through urologists or directly from MyUTI.
MyUTI makes it fast, easy and convenient to identify the root cause of your chronic UTIs. Then be connected to a specialist in your area for targeted treatment.
