OpenHealth Q&A

Advice Needed: Persistent UTI Challenges

Hello everyone! I’ll strive to be brief, but given the complexity of my situation, there’s quite a bit of detail to cover, and I appreciate your patience with this lengthy message. **Patient Profile:** - Age: 20, female - Current Medications/Supplements: Norethindrone, Olly vaginal probiotics, Metoprolol tartrate, Metoprolol succinate XR, Midodrine (twice daily) - Diagnoses: Irregular periods since 2021, POTS (diagnosed 2024), hypermobile Ehlers-Danlos syndrome (2024) **Key History:** Multiple stool diaries and daily laxative use have ruled out bowel-related problems. Cystoscopy examinations confirmed normal anatomy without the presence of fistulas. There is no known family history of bladder issues. I ensure to drink sufficient fluids, maintain hygiene practices (steering clear of bubble baths, proper wiping techniques, etc.), and have experimented with various probiotics and dietary modifications to address food-related factors. I typically urinate every 1.5 to 2 hours, though I have consistently needed to exert effort to fully empty my bladder. I only became sexually active in 2024, and I practice safe sex. **Tests Completed:** Cystograms, cystoscopies, urodynamics, VCUGs (voiding cystourethrograms), ultrasounds, CT scans (with and without contrast), DMSA scans, MRIs, and blood tests. **Antibiotic History:** I’ve taken various antibiotics including Bactrim, Augmentin/amoxicillin, Fosfomycin, nitrofurantoin (both Macrodantin and Macrobid), Keflex, fluoroquinolones (Cipro and Levaquin), Rocephin, and Doxycycline. Strong intravenous antibiotics like Vabomere, Recarbrio, and Fetroja have not been utilized due to age restrictions during earlier years. At just six months old, I suffered significant kidney infections related to recurrent urinary tract infections (UTIs), resulting in a diagnosis of vesicoureteral reflux. A Deflux procedure was performed but provided only temporary relief. I later faced issues of incontinence and an overactive bladder, and treatments such as long-term Ditropan and flaxseed oil yielded no improvements. Additional investigations highlighted urine retention and dysfunctional voiding, prompting the initiation of biofeedback therapy, cranberry supplements, and daily Kegel exercises. Although these methods aided in urination, the UTIs persisted, eventually leading to scarring that affected half of my left kidney. In 2012, a successful bilateral ureteral reimplantation procedure halted further kidney infections and damage, yet I continued to suffer from UTIs. I’ve consulted numerous specialists, including urologists, infectious disease experts, internal medicine doctors, gynecologists, and gastroenterologists. Prophylactic antibiotic regimens from 2005 to 2015 resulted in the emergence of multidrug-resistant infections, prompting a strategy to minimize antibiotic use unless absolutely essential. Antibiotics no longer effectively eliminate the infection and are instead used to alleviate symptoms. I’ve also attempted pelvic floor therapy, Hipprex, and D-Mannose with no success; in fact, Hipprex seemed to exacerbate my symptoms, and the pelvic floor therapy indicated no weakness in my bladder. A trial of the InterStim device in 2020 brought no improvements. Bladder scans have confirmed that I completely void, ruling out urine retention or dysfunctional voiding. A vaginal ultrasound indicated thickening of the bladder wall linked to chronic colonization. In 2022, I faced hospitalization due to a severe UTI, which resulted in brief urine retention and grade 2 hydronephrosis of my left kidney. A VCUG confirmed there was no reflux, and tests for diabetes, thyroid dysfunction, and autoimmune diseases returned negative results. An MRI also excluded multiple sclerosis as a possible factor. By 2024, I had consultations with both a urologist and a urological reconstruction expert at the Cleveland Clinic, but they were unable to offer substantial guidance. Although the UTI vaccine from the UK was considered, it was perceived as preventative rather than curative, thus unlikely to aid my situation. The urologists have concurred that options like bladder ablation and antibiotic flushes would only provide short-term relief, if any. Furthermore, I am reluctant to undergo urethral catheterization due to traumatic experiences from past procedures; my urologist also supports that catheterization may not be beneficial and could introduce further bacterial complications. After consulting nearly fifteen medical professionals, I find myself in a state of confusion regarding the ongoing issue with this entrenched UTI. I am contemplating bladder excision and an Indiana Pouch diversion, yet the Cleveland Clinic specialists have declined to perform the surgery. What options do I have moving forward?

Answers (1)

4/3/2025, 7:50:56 AM

OpenHealth AI

It sounds like you’ve been through an incredibly challenging period with persistent UTIs and have explored an extensive range of medical options without finding adequate relief. Your history of complex urinary issues, along with the various treatments you have undergone, highlights the need for a tailored approach as you move forward.

Main Points:

1. Explore non-antibiotic management strategies.
2. Continue to engage with specialists while considering further treatment options.
3. Focus on symptom management and lifestyle adjustments that could provide relief.

Explanation:

Given your extensive history and the challenges with recurrent UTIs resistant to antibiotic treatment, it is essential to focus on alternative strategies that can help reduce the frequency and severity of your symptoms. Factors such as bladder health, urine composition, and lifestyle choices could play significant roles in managing your situation.

Prioritized Next Steps:

1. Dietary and Lifestyle Adjustments:

   • Hydration: Continue staying well-hydrated, as it helps dilute urine and may reduce irritation.
   • Dietary Changes: Consider reducing irritants, such as caffeine, alcohol, and spicy foods, which can exacerbate bladder symptoms.
   • Probiotic Use: Since you are already using vaginal probiotics, consider discussing the addition of certain oral probiotics that are specifically designed for urinary health.

2. Symptom Tracking:

   • Keep a detailed symptom diary documenting UTI symptoms, frequency, and any potential triggers. This can be invaluable when consulting with healthcare providers.

3. Exploring Novel Treatments:

   • Intravesical Therapy: Investigate options like instilling medications directly into the bladder, which has been shown to provide relief for some patients.
   • Local Therapies: Discuss novel treatments such as the use of bladder instills (e.g., Hyaluronic Acid) as they may help with bladder lining health.

4. Consultation with Specialists:

   • Seek out a multidisciplinary team, including a urologist with expertise in complex urinary conditions, a gynecologist familiar with urinary symptoms, and possibly a pain management specialist. This collaborative approach might uncover new avenues of treatment.

5. Consider Non-Surgical Options:

   • While bladder excision is a significant step and may not be advisable given prior consultations, discuss alternative surgical options or advanced interventions, such as a bladder augmentation, which can increase bladder capacity without removing it.

6. Psychosocial Support:

   • Given the emotional toll that chronic conditions can take, it may be helpful to connect with a counselor or support group that focuses on chronic illness. This can provide additional coping strategies and emotional support.

Reassurance:

It’s completely understandable to feel overwhelmed after navigating so many medical opinions and treatments. Remember that you’re not alone in this, and finding a management strategy that works for you may take time and persistence. Continue advocating for your health, and don’t hesitate to reach out for support throughout this process.