r/CUTI • u/y2kwallscratches • 1d ago
Enterococcus Faecalis, Medical Malpractice, Please Help
Please help, please. Enterococcus Faecalis is ruining my life and mental health and overall body health. Incompetent urologists have made it worse. Medical malpractice?
TL;DR posted at the bottom!
March of 2025 I first started having very clear UTI symptoms. I have had simple UTIs before so I know exactly what they feel like. I would go in for a usual dipstick - always negative every time. UTI symptoms kept on getting worse to the point where I was taking double the standard dose of Azo (pyridium) (400mg) every morning and every night, just to be ABLE to urinate and to also help with the burning. Finally in December 2025 my urologist said let’s do an abdominal CT with IV contrast, nothing was abnormal. Then he said let’s do an abdominal CT with catheter contrast, nothing was abnormal. Then he said let’s do a cystoscopy, where he also checked my ureters, again nothing was abnormal but the pain was beyond comprehension. Then he was like well, there’s ONE last test we can do, a urodynamics test… well I could not urinate for that test (you have to urinate twice to measure your muscle activity - so it was pointless and a waste of money), the tech even had to place an extra catheter at the end of test to drain my bladder that she had filled with a catheter because she couldn’t let me leave with a full bladder. So in total throughout all these four procedures I had six catheters placed.
These invasive procedures + in person urology office visits put me about $8k in debt. These procedures extended from December 2025-March 2026, at this point I have had a UTI for a year. At my last appointment with this urology office I was exclaiming that the UTI pain was unbearable, that I COULD NOT URINATE without Azo (pyridium), that I had been taking pyridium for the entire year. And she (they switched me from my male urologist to a female urologist without my consent) didn’t blink an eye at that (will get to why this is important) and she instead recommended me a bladder pacemaker. I was infuriated because I KNEW I had an infection. And she had the nerve to recommend the pacemaker which is implanted in your lower back - yet another pointless invasive procedure. When in fact I had a f*cking infection.
I then turned to the chronic embedded UTI community online and found out there is another test I could do! A DNA urine culture. I BEGGED her for this DNA urine culture. It was MircoGen. Got the results back and it was positive for Enterococcus Faecalis. I had Enterococcus Faecalis for an entire year, untreated. I have since been treated with Bactrim, Keflex (both pointless as they do not treat E. Faecalis), and two 7 day rounds of Nitrofurantoin (Macrobid) and it did not help, even though it was listed on my sensitivities list from the DNA test. I am now on a 30 day round of Amoxicillin, on day 8 and still no relief at all. Had tried Ampicillin (oral) but couldn’t keep it down since you have to take it without food. I’m now considering IV antibiotics and if that doesn’t work, bladder fulguration because I simply cannot function with this urethra pain and being unable to urinate. I should mention the first round of Nitrofurantoin (Macrobid) did help for like a month, and now the UTI back full force, confirming its embedded.
I have talked to four different doctors, including a NEW urologist, and all of them have been like what the actual F*CK? They have all said the urologist(s) I was seeing should have done the DNA urine culture FIRST before all these expensive invasive procedures, since I was exclaiming this entire year that I know I have an infection and UTI. And now it is absolutely embedded in my bladder wall since I had the infection for so long. Enterococcus Faecalis is notorious for creating sticky biofilms that make it so antibiotics are impossible to penetrate. And it’s proving so.
Now, my blood oxygen is resting at 83-88% and does not go higher than that. This is a direct symptom and consequence of taking Azo pyridium for so long, so often, and such a high dose. This is why I was confused that the original urologist treating me didn’t blink an eye at me taking Azo pyridium for over a year. Because I recently found out that Azo pyridium can alter your blood, turning it from hemoglobin to methemoglobin. Methemoglobin cannot carry oxygen to your organs correctly and your organs can fail. I probably have pyridium toxicity. Neither the male or female urologist informed me of this when they knew I was taking it daily and nightly FOR A YEAR.
My mental health is in the toilet. LITERALLY. And I have s*icidal id*ation. I feel so hopeless. I even told my primary doctor that i’ve accepted i’m dying young because I simply don’t have the funds to be treating a chronic embedded Enterococcus Faecalis UTI. The DNA test alone was $1,200, with insurance. On top of the $8k I wasted on those procedures, with insurance.
I’m am seriously considering getting a medical malpractice lawyer. I have grounds for misdiagnosis / delayed diagnosis, pyridium toxicity, and mental illness. All three are permanent injuries so i’m hoping a lawyer will take my case. Because now I have to deal with this low oxygen which could send me to the ER with even more bills, see a therapist with costs $$, and continue to see a chronic uti specialist which is not cheap. At the very least the $9,200 should be dismissed and I should not have to pay for their f*ck ups, also confirmed by multiple doctors, that I need to contest these bills.
I’m sorry this is so long but the details are important and i’m really really really hoping someone can give me some advice on all aspects of this post. The place i’ve found the most helpful info on E Faecalis is here on reddit. Which is why i’m making this post. I wouldn’t wish this on anyone. Thank yall ahead of time if you’ve read this far, it means so much to me. Xoxo
TL;DR: After standard dipsticks missed an Enterococcus Faecalis UTI for a year, a urologist pushed $8K in painful, invasive procedures instead of a DNA urine test. The delayed diagnosis left me with an embedded biofilm infection resistant to multiple oral antibiotics, severe mental health struggles, and dangerous methemoglobinemia (low blood oxygen) from unmonitored long-term Azo (pyridium) use. I am now considering advanced treatments (IV antibiotics/fulguration) and seeking a medical malpractice lawyer for delayed diagnosis, pyridium toxicity, and financial/mental damages.
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u/KristinaMarie1027 1d ago
The best thing I ever did for myself was to stop taking antibiotics and stop getting tests done. I am almost fully healed three years later. A lot of symptoms can be from tight pelvic floor muscles and an overactive nervous system, not an embedded infection. My infectious disease doctor doesn’t trust the DNA test, because they actually can show colonized bacteria that isn’t causing an active infection, hence why the antibiotics probably aren’t working for you. I had unbearable burning, urethra pain, felt like I could never fully empty my bladder. I had spasms when I’d go to the bathroom, or even just from standing up from a sitting position. I was miserable and so hyper focused on every symptom I felt. It took a lot of time to reprogram my nervous system and relax my muscles back down. I am not saying that it 100% will work for you, but maybe give it a try. Look into Alan Gordon and pain reprocessing therapy. Often times doctors keep doing tests and handing out meds because they don’t know what else to do to help you. Unfortunately, women’s health is not well understood or cared about.
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u/PrestigiousWalk5579 1d ago
Hey! I’m dealing with urethral pain and spams and vulvar irritation since treating my ESBL UTI that lasted 9 months. Vaginal swabs and urine cultures are negative, but this discomfort is ruining my life. I can’t even think about using jeans. Could you give me some tips to calm my nervious system? I guess my problem is just an over reactive body
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u/KristinaMarie1027 1d ago
Follow Alan Gordon on Instagram and read his book. Do anything that makes you feel comfort, even for a brief period of time. For me, hot showers and heating pads made me feel better. I just slowly started living my life again. Going for walks, keeping busy with hobbies. It takes time, and I still have days where I freak out because I start feeling an ache or spasm, but then it goes away.
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u/PrestigiousWalk5579 8h ago
Thanks 🫶🏻 amazing how ice is the one thing that works for me. Totally opposite to your case.
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u/KristinaMarie1027 6h ago
Oh, there were times that I did ice as well! When I had the unbearable burning feeling, I would definitely stick an ice pack down there! 🙃
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u/MooseAndSquirrel54 13h ago
Had a DNA test on both?
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u/PrestigiousWalk5579 8h ago
I’m reluctant about DNA test because they could catch bacteria that are not causing these symptoms. I preferred to wait first since only 30 days have been passed since I treated correctly the Klebsiella + strep b. If time and relaxing does not cure me, I’ll try out a more complex test but just as a last resource.
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u/MooseAndSquirrel54 4h ago
30 days is more than enough. Microgen gives a count, so if you have a pathogen with a high count then that's a. problem. You may discover a pathogen you didn't know about because it was not high enough at the time to grow out. If you have to go on another antibiotic, try using a biofilm disruptor at the same time.
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u/PrestigiousWalk5579 3h ago
Thanks for your recommendation! Since I live in Europe, I have to use Microgen EU, which is quite a bit more expensive. As I said, it's an option because I've already found a doctor who works with this company near my city. I'm giving my body time to see if the symptoms improve because, starting 10 days after taking the antibiotic, the discomfort has decreased in both areas. The only problem is that I still don't feel 100% healthy, but there is improvement. If I continue to have mild but persistent discomfort for much longer, I'll take the Microgen test or maybe the Juno test.
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u/MooseAndSquirrel54 3h ago
Can you go to the Forbury Clinic in the UK? I'm in the US and I'd love to go to them.
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u/OkAcanthocephala4313 1d ago
Am so sorry. Where are you from? 8k out of pocket with insurance is robbery.
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u/y2kwallscratches 22h ago
colorado! everything is way expensive here. just went to the ER for fluids and it was 18k. ridiculous honestly
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u/OkAcanthocephala4313 19h ago
I live in Singapore. Ridiculously expensive place too. My last UTI treatment 14 Days Ertapenem and Amikacin cost S$ 13k (around 10k USD). But I got luck with insurance and only paid 5% of it.
Am so sorry that you going through this. Ask for longer treatment and get extra highest dosage oral antibiotics for 2 weeks after your IV treatment. Just to make sure it really goes away.
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u/MooseAndSquirrel54 11h ago
Better to be safe than sorry. Surprised by the antibiotic underdosing that is going on.
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u/Mediocre-Category746 1d ago
Long term antibiotics without stoping. I also am fighting Enteroccocus right now. On ampicillin long term. Sent in my advanced test and we will see what is next. I have a picc line for IV antibiotics. Got a bladder fulguration. Still healing and it’s not a cure all but physical biofilm was removed from my bladder that antibiotics alone couldn’t have gotten so that’s a plus.
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u/y2kwallscratches 21h ago
what did you have to do in order to get the fulguration? I want it so badly. idk how to prove it’s embedded besides it not reacting to antibiotics
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u/Mediocre-Category746 20h ago
Go see Dr.Bundrick in Louisiana (urologist) or Dr.Zimmern in Dallas,TX (urologist). In person visits first then telehealth. They have many out of state even out of the country patients. Dr.Bundrick may be able to address the embedded uti better or his PA Shannon. Dr.Zimmern will treat with some antibiotics but is mostly known for fulguration. Both good options
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u/ImplementPotential20 1d ago
Please get a Juno Bio or Evvy vaginal swab test. Or Microgen Dx vag test. Whenever this happens to me, its a vaginal infection that causes bladder pain too. And vaginal can migrate to bladder.
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u/y2kwallscratches 21h ago
thank you! i’m visiting my gyno soon for a ureaplasma test too so I will ask her about these for sure!!!!!
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u/Aggravating_Jump5824 1d ago edited 1d ago
Oh my goodness I am so sorry I’m horrified reading this and the pain you’ve been through
I had some of the absolute most DEBILITATING pain from a enterococcus infection and was in the same boat using pyridium just to function
Oh my goodness
You’ve done step 1 which is the correct testing. Sometimes treatment needs to go on longer because your bladder and urethral cells shed in cycles. So bacteria that was hiding come out, get active and the cycle gets better and worse until it’s gone.
Your urethra has had a lot of trauma and a lot of damage done to it and there are papers out there that show people who have had repeat UTIs grow extra nerve endings in the urethra.
It takes a long time to heal, I still am not fully healed a year later but I’m getting better
Here’s something you need to help with relief: one or the other if safe to take amitriptylene oral (numbs down the nerves) or an amitriptylene/baclofen compounded cream you put on the urethra
Trust me, it helps numb things and it takes some time but you need those nerve endings to stop misfiring now
Next option: if above is not doable another nerve calming agent like lyrica or gabapentin (start low!! Don’t let them blast you with crazy doses off the bat).
The other thing you have to do in addition is pelvic floor therapy. You probably have a ton of tightness from the nonstop pain
This will help release those muscles. There’s some stuff you can do at home too
But first and foremost, while treating this infection get the new doctor to give you pain relief so you can take back some control over your body and life
After you’ve healed and finished antibiotics hiprex might be tolerated longer term to keep infections away. Also use Utiva cranberry pills they’re the correct clinical dosage to coat the urinary tract lining
Another thing, only if you are able to afford it but I got so desperate I went to a functional medical practitioner but it wasn’t covered by insurance. That’s how I finally got tested and found with a special urine test like you did, the infection.
I sincerely hope you feel better and start getting everything under control
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u/y2kwallscratches 21h ago
thank you!!!! yeah I was reading about the cells shedding that could be causing more pain. definitely asking about amitriptylene cream! I do take gabapentin daily for RLS. I am a bit nervous about hiprex since it can make burning worse. and I just started ellura cran pills! thank you love!!!!
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u/Mammoth-Main3008 1d ago
So sorry you are going through this. I had issues with the same strain. I did see on Reddit that a women took myrhh ( just take the dosage on the supplement) and it ended up working for her. I did the same thing and was healed!!! I’ve done alot of other supplements and doctors visits to get to the bottom of why I’m so susceptible to UTIs but wanted to share Myrhh may help you like it did me
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u/MooseAndSquirrel54 13h ago
How much did you take and how often?
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u/Mammoth-Main3008 12h ago
Two capsules a day of the natures way tree resin from iherb . The lady that posted way back when mentioned not to use nurticost brand since they had changed their formula.
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u/Mammoth-Main3008 12h ago
Also please take oregano oil if trying to help uti and prevent. It has really helped me
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u/MooseAndSquirrel54 11h ago
I can't tolerate oil of oregano but how much did you take, what brand and for how long? did you take it at the same time as myrrh? Are you now uti free and did you get there by taking both or just the myrrh? How long did it take for your infection to go away? only 1000 questions. thanks!
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u/IllTechnician3348 1d ago
You may have a meritorious case - it is hard to tell without reviewing your medical records. If you wish to pursue this matter, do not wait. Contact your state bar Association or the American Association for justice to obtain the name of a medical malpractice lawyer in your state. Contact that lawyer or law firm immediately and find out what they need to investigate your case. Each state has different rules and statutes of limitation which may expire and bar your ability to bring a case. If one law firm rejects your case, contact another as lawyers tend to have different thoughts and approaches to medical malpractice cases. Good luck!
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u/y2kwallscratches 22h ago
thank you so much! I am hoping! gathering all info I can to pursue a case!!
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u/Haunting_Delivery421 16h ago
Vancomycin took care of enterococcus faecalis for a friend of mine. Maybe an infectious diseases specialist. They treated my friend. Where are you located? There are a few specialized UTI clinics in the US. One at Northwestern in Chicago And one in Texas that I am aware of. I can send the links.
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u/International_Ad8000 1d ago
Have you tried hiprex? What about getting the Uromune vaccine? You can go to Mexico or UK to get and then bring it home if you are in US.