OpenHealth Q&A

Seeking Guidance on Persistent UTI Issues

Hello everyone! I’ll aim to be as succinct as possible; however, my situation has a lengthy history. I apologize for the detailed account ahead. **Patient Overview:** - Age: 20 years - Current Medications & Supplements: norethindrone, Olly probiotics, vitamin D3, metoprolol tartrate, metoprolol succinate XR, and midodrine taken twice daily - Medical Conditions: irregular menstrual cycle diagnosed in 2021, vitamin D deficiency identified in 2023, POTS diagnosed in 2024, and hEDS also confirmed in 2024. **Key Medical Background:** I have ruled out any bowel-related concerns through comprehensive stool diaries and regular use of laxatives. Multiple cystoscopy procedures confirmed that my anatomical structure is correct, with no signs of fistulas. There is no family history of urinary tract issues. I ensure that I stay well-hydrated and maintain good hygiene practices, avoiding bubble baths and employing proper wiping techniques. I’ve tried numerous probiotics and made dietary changes to eliminate food-related triggers. I typically need to urinate every 1.5 to 2 hours, but I have consistently struggled to fully empty my bladder. I’ve engaged in safe sexual practices, though I only became sexually active in 2024. - **Diagnostic Tests Conducted**: These include cystograms, cystoscopies, urodynamics, VCUGs, ultrasounds, CT scans with and without contrast, DMSA scans, MRIs, and extensive blood tests. - **Antibiotics Administered**: My history with antibiotics includes Bactrim, Augmentin/amoxicillin, Fosfomycin, nitrofurantoin (both Macrodantin and Macrobid), Keflex, fluoroquinolones (Cipro and Levaquin), Rocephin, and Doxycycline. Stronger IV antibiotics like Vabomere, Recarbrio, and Fetroja have not been used due to my age at the time of consideration. I have consulted various specialists, including urologists and experts in infectious diseases, internal medicine, gynecology, and gastroenterology. At just six months of age, I began suffering from severe kidney infections linked to recurrent UTIs and was diagnosed with vesicoureteral reflux. Although a Deflux procedure was performed, it only provided short-lived relief. Further diagnoses indicated incontinence and an overactive bladder; however, long-term treatments such as Ditropan and flaxseed oil proved ineffective. Subsequent evaluations showed urine retention and dysfunctional voiding, leading to biofeedback therapy, cranberry supplements, and daily kegel exercises. While these approaches improved my ability to void, infections continued, causing considerable damage to about half of my left kidney. In 2012, a successful bilateral ureteral reimplantation managed to halt further infections and damage, yet UTIs persisted. From 2005 through 2015, I underwent several preventive antibiotic regimens, which resulted in the emergence of multidrug-resistant infections, compelling me to limit antibiotic use to critical situations only. Antibiotics often fail to resolve the infection, serving only to alleviate symptoms temporarily. I’ve also attempted pelvic floor therapy, as well as treatments with Hipprex and D-Mannose—though Hipprex exacerbated my symptoms, and pelvic assessments showed no weakness in my bladder. A trial of InterStim in 2020 did not yield any positive changes. Bladder scans indicate that I completely void; thus, urine retention and dysfunctional voiding are ruled out. A vaginal ultrasound revealed thickening in the bladder wall, associated with chronic bacterial colonization. In 2022, I required hospitalization due to a severe UTI, which resulted in temporary urine retention and grade 2 hydronephrosis in my left kidney. A VCUG indicated no reflux, while blood tests for diabetes, thyroid issues, and autoimmune conditions returned negative results. An MRI also excluded Multiple Sclerosis. In 2024, consultations with a urologist and a specialist in urological reconstruction at the Cleveland Clinic shed little light on my condition. Although an UTI vaccine from the UK was evaluated, its preventative nature offered little hope for my situation. Urologists concluded that procedures such as bladder ablation or antibiotic flushes might provide only fleeting relief. Due to past painful experiences, I am reluctant to undergo urethral catheterization, and my current urologist also believes that such an intervention may be unhelpful and could introduce more bacteria. After seeing nearly 15 medical professionals, I find myself in a challenging position regarding this persistent UTI. I am contemplating bladder removal and the creation of an Indiana Pouch diversion; however, the Cleveland Clinic physicians have denied this surgical option. What pathways should I consider moving forward?

Answers (1)

4/3/2025, 1:11:03 PM

OpenHealth AI

I understand that you're facing a very complex and distressing situation with persistent urinary tract infections (UTIs), and it's clear you've been through a lot seeking relief. Your in-depth medical history and proactive approaches show your commitment to finding a solution. Given the complexity of your case, let’s focus on practical next steps and strategies to manage your symptoms more effectively.

Key Points

• Persistent UTIs, especially with a history of antibiotic resistance, require tailored management strategies.
• Exploring non-antibiotic options and symptom management techniques is essential.
• Engaging in supportive therapies that may improve bladder health and reduce irritation is crucial.

Explanation

Your history with UTIs and recurrent kidney issues points to a multifaceted problem that may include bladder dysfunction, chronic bacterial colonization, and antibiotic resistance. Given that traditional antibiotic treatments have been less effective due to resistance and other complications, exploring alternative therapies becomes critical. Additionally, since procedures and medications have not yielded long-lasting relief, a focus on non-invasive management may be beneficial.

Next Steps

1. Consideration of Low-Dose Antibiotic Prophylaxis:

   • Since you've had issues with antibiotic resistance, discuss the possibility of a modified long-term prophylactic regimen with your doctor for maintenance therapy. Often, rotating antibiotics or using a lower dose strategically may help manage bacterial load without contributing to resistance.

2. Exploring Intravesical Treatments:

   • Investigate the potential of intravesical instillations, which involve delivering medications directly into the bladder. Solutions like hyaluronic acid or chondroitin sulfate may help soothe the bladder lining and reduce irritation.

3. Focus on Lifestyle Modifications:

   • Continue with hydration to dilute urine but consider bladder training techniques (timed voiding) to help regulate urination patterns. This might also help prevent frequent irritation of the bladder.

4. Dietary Considerations:

   • Since food triggers have been considered in your case, maintaining a food diary might help identify any unnoticed irritants. Some supplements, like D-mannose or cranberry extracts, could also be revisited with a focus on lower doses and regular use rather than high doses used sporadically.

5. Engage with Pelvic Floor Physical Therapy:

   • Although you have previously tried pelvic floor therapy, a re-evaluation might prove beneficial, especially under a knowledgeable therapist specializing in urologic conditions. Targeted exercises may help improve bladder control and function.

6. Psychological Support:

   • Chronic conditions can take a toll on mental health. Consider joining support groups for individuals with similar experiences, or seek therapy to help cope with the stress and anxiety that can accompany persistent health issues.

7. Second Opinions:

   • If you’re contemplating significant interventions like bladder removal, consider seeking a second opinion from additional specialists or research centers that are known for handling complex urology cases, ensuring all possible angles are explored.

8. Documentation and Symptom Tracking:

   • Maintain meticulous records of symptoms, treatment responses, and any changes. This data will be invaluable when discussing ongoing management with healthcare providers.

Reassurance: It's important to center your treatment around what impacts your quality of life positively. These strategies, while they may take time, are geared towards improving your overall health and comfort.

Please let me know if you'd like to discuss any of the above points in more detail, or if you need further assistance navigating your options.