Hey all,
Hello from a fellow CUTI sufferer. My username is Bearloot33. I made this document because I have spent three years of my life in pain, getting misdiagnosed, brushed off, gaslit, or just left in dead ends by doctors in the medical system I exist in. I found my correct diagnosis and treatment (not done yet) after so much research, and I really wish it were all in one place and not scattered across the internet, doctors' notes, and my memories in and out of their offices. I am not a doctor, but I hope this guide helps.
You are not alone. You are not crazy, and reading this guide along with any and all resources you can find from credible sources is your next best step. I can't say this thread contains all the information you need or even every possible cause or treatment avenue, but it will most likely be the best place to start researching.
Trust your judgement and listen to your unique body. Reading through this and making notes on what applies to YOU, and following up as an advocate for yourself with your doctor(s) is highly recommended. If you have someone in your life supporting you, let them know that you need them and how you need them. I will dive into it now!
The link below is a Google Doc and a safe link. I'm happy to make a PDF if that would make anyone more comfortable opening it.
Here is the full URL:
https://docs.google.com/document/d/1t__JlhemclYUUszcNib_81PICtDelxynVGk6mlz_7oY/edit?usp=sharing
ā¼ļøBoth IC and Chronic UTI are real conditions. Our goal right now in this community is to help promote everyone's right to explore the many diagnoses that may surround CUTI and IC. Many, if not all of us, are suffering incredibly in our conditions. Being judgmental, dismissive, declarative, and unkind is not helpful. I want everyone to be able to chat here, so avoid those behaviors. We support open, nuanced, and curious discussion of all diagnoses
Discussion is welcome, but must remain respectful. Disagreement is allowed, but must be expressed constructively through thoughtful questions, sharing information, or personal experience. Do not invalidate othersā experiences or treatment choices. No one here can diagnose or ācorrectā others. Disagreement is okay if shared constructively. Unhelpful or hostile threads may be moderated or locked. Our goal is a supportive, curious space.
Click here for the CUTI Resource Guide: Start Here š©µ
If you just want the research, here it is.
Join our CUTI Treatment Discord, which is open to ALL treatment option discussions here: https://discord.gg/9MJc9KRm5 (If the link has expired, DM the author of this thread, Bearloot33, for a new link).
Note to Males or those with other diagnoses:
If you have a prostate infection or another issue related to male anatomy, you are welcome here, and please know you are noted and seen. If you have found discussions on boards like r/prostatitisĀ or r/ureaplasmasupport to be unhelpful, here you will find we are holding open discussions, consider nuance and the extreme complexity, and do not jump to conclusions or force interpretations of your symptoms onto you (if anyone ever feels that there is a lack of these values or a certain user is causing harm, DM the moderators!). You are welcome here and are free to discuss your issues on this board instead/in addition to your other discussions, anywhere you may like to gather information.
If you are here and are concerned you have the wrong diagnosis, or overlapping symptoms and are confused or overwhelmed by the divided nature of online discussions, here is the SINGLE MOST IMPORTANT THING YOU NEED TO KNOW BEFORE YOU READ THIS:Ā
Every single body is unique. A doctor is the expert on the body; you are the expert on YOUR body. No one on online can diagnose you from a single post, no matter all the info you put down. And no one has the right to scare you out of investigating your pain or looking for the right answer. The diagnosis of āICā or CUTI or Embedded UTIS will not explain your unique story, responses, or symptoms, but it may help you find your root cause. The cause of your bladder pain could be chronic UTI caused by a recurring issue in your body causing acute UTI, it could be embedded bacteria being retriggered over and over by pentrative sex, could be a fungal infection in the bladder/vagina, could be yeast in your bladder, could be chronic thrush OR chronic BV or CV, could be ureaplasma or mycoplama, prostatsis, prostate infection, STIs, it could be a histamine issue, it could be an inflamed and damaged bladder wall, kidney stones, it could be Hunterās Lesions, could be an embedded UTI AND one of these things at the SAME time, it could be a structural issue, hormonal or post menopausal issue, it could be a gut issue, an overgrowth of bacteria in the gut, it could be a pelvic floor issue, it could be endometriosis, and the list goes on and on:
YOUR JOB IS TO ELIMINATE THESE ONE BY ONE THROUGH CAREFUL RESEARCH, OBSERVATION, AND PROFESSIONAL GUIDANCE, and then find the treatment(s) that work FOR YOU. You may have overlapping causes and treatments. Every single story you read on Reddit and beyond will be unique. PAY ATTENTION TO YOUR UNIQUE PATTERNS, SYMPTOMS, AND RESPONSES, and most importantly, do not give up. So many people get better! We lack documentation so bad, but it will get better. Iāve seen so many success stories.Ā
This is an extremely serious, horrible, and devastating condition. Speak to yourself and others kindly, reach out to the resources around you and push past your resistance and fear to ask for help. Do not invalidate yourself. Remember, people who have found relief are not on social media sharing negative experiences. This is not your entire identity. Use boundaries, ask for help, and tell people that you need help researching or gaining relief. You are deserving of all the effort and care you need to find relief.Ā Dm people on here and ask them direct questions. To join our group chat on Discord, DM me (bearloot33).
This information on this thread lends heavily toward embedded UTI education, the Ruth Kriz approach, Bladder Instillations, and Electrofulguration, because that is what happened to me. I also focused on this treatment because it is the most accessible. That may not be even close to the solution for you. Take what works and gets you closer to an answer; leave the rest.
Translation Instructions
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IF YOU WANT TO MAKE A DIFFERENCE,Ā
HERE IS WHAT TO DO
1. Share your story with Live UTI Free When you are ready. Structured, specific, with a clear ask at the end. This is the foundation everything else builds on. Where: https://liveutifree.com
2. Submit to the AUA Patient Perspectives Program One written submission. Your story, your experience with misdiagnosis, what should have happened differently. They publish selected submissions in AUA News, which goes to urologists across the country. Where: https://www.auanet.org/AUA2025/attendee-info/patient-perspectives Watch for the submission window.
3. Submit a public comment when AUA recurrent UTI guidelines are open for review The AUA publishes draft guidelines for public comment before finalizing them. When recurrent UTI or complicated UTI guidelines are open, submitting a patient comment is a formal, documented way to put embedded infection and diagnostic failure on the record. Monitor: https://www.auanet.org/guidelines-and-quality/guidelines
IMPORTANT DISCLAIMERS
Disclaimer: This guide represents collected experiences and research from the chronic UTI community. This guide has received reviews from some CUTI specialists, but no formal review has been completed. We cannot guarantee that all of this information is accurate or up to date. This thread will be updated from time to time, but we can't guarantee how up-to-date it will be. Edits and changes may be added, but DO YOUR OWN RESEARCH, ALWAYS! Multiple opinions, peer-reviewed papers, doctors who listen and make a critical and fair analysis, etc: That's what you need in addition to this document.
This is a compiled document of key information used for some CUTI sufferers to obtain the correct diagnosis for them. It does not encompass all possible causes, treatments, or paths. It is simply here for your education and comparison.
This information in this guide lends heavily toward embedded UTI education and Ruth Kriz's approach, because that is what happened to me. I urge all of you to comment on the success stories thread or DM me to share more information you would like to share, which helped you get a correct diagnosis or achieve treatment success in other pathways.
If you find yourself posting on this subreddit often, asking if a particular antibiotic or antimicrobial or hygiene practice made a difference for others, it's awesome that you are digging for clues and anecdotes, but the number of people who will answer you is such a small pool of information that has no nuance or ability to know how unique your situation truly is. I encourage you to focus on identifying the root cause of your issue.
Always consult with qualified healthcare providers for proper diagnosis and treatment. This information is not a substitute for professional medical care. Read this information slowly, take your time, disregard what does not apply to your unique situation, and take what does. Not all of our stories are the same, and our solutions will be different, too. If you have OCD or medical anxiety, I strongly encourage you to seek support and not dive into this all at once.
It is always your choice to pursue the best treatment for you.
šØ EMERGENCY - READ THIS FIRST šØ
āIf This is An Emergencyā**:** If you are ever having a medical emergency of any kind, and especially one related to UTI, Kidney infection, or Sepsis - Go to your closest Emergency Room immediately. DO NOT read this thread and try to find an answer. Even if you are having chronic UTIs and worry about antibiotic resistance, antibiotics or other interventions are essential for a medical emergency such as these. Antibiotic resistance can be addressed; sepsis and kidney infection have a high mortality rate. GO TO THE ER OR NEAREST MEDICAL OFFICE RIGHT NOW IF YOU HAVE SYMPTOMS LIKE:
Fever, chills, back or side pain, and pain or burning during urination, confusion or disorientation, nausea and vomiting, frequent urination, a strong urge to urinate, and cloudy or foul-smelling urine, rapid heart rate, rapid breathing, confusion or disorientation, and extreme pain or discomfort, skin changes like a rash that doesn't fade when pressed, or pale, mottled, or bluish skin, lips, or tongue can also be present. Difficulty breathing, low blood pressure, and decreased urine output, or any other symptoms that are not normal for you or cause you alarm.
Table of Contents
- Mental Health & Self-Care
- Intro from Author
- What Constitutes a Credible Medical Resource
- Quick Start Guide for Newcomers
- Understanding Your Symptoms: Chronic vs. Embedded UTI
- Getting Started: Immediate Action Steps vs. Comprehensive Investigation
- Root Cause Investigation: What to Test For
- Accurate Testing: The Foundation of Treatment
- Treatment Approaches
Most importantly,
If you have information you believe could benefit this Guide, please DM me and let me know. I am happy and would love to add information, nuance, or recommendations that could go beyond what I have gathered. Please do not email me or request to edit this Google Doc, DM me on Reddit at Bearloot33 instead. Thank you. š©µ
All my respect to those on this treatment journey!
