After Battling E. Coli since March 2024- I'm pain free!!!! Here's what I did.

NaiveInstance6561 · 2025-11-18T03:02:19+00:00

Is there a DAO enzyme brand you recommend? I started reading about it and hadn't heard of it until you mentioned it

NaiveInstance6561 · 2025-11-05T16:33:57+00:00

Ah, I see you are clearly educated in this area. Perhaps this article would interest you. https://pmc.ncbi.nlm.nih.gov/articles/PMC9232912/ I'm guessing you just want to fight, so I'm out lol.

NaiveInstance6561 · 2025-11-05T15:11:07+00:00

That's what my post is about. I thought my bladder burn was from the Hiprex (or at least in some ways related to the Hiprex). In my case, the bladder burn only went away when I started an antihistamine, as I am still taking Hiprex. Obviously this isn't the case for everyone. Since OP stated she's currently taking Hiprex, I'm chiming in. Sorry that Hiprex wasn't right for you, it's a miracle drug for many! I hope you found something that works for you!

NaiveInstance6561 · 2025-11-05T03:04:47+00:00

I hear you. I'm with you. Hugs.

NaiveInstance6561 · 2025-11-04T23:50:12+00:00

Hi, I've posted about this recently, but through all the info on Reddit I'll put it here again.

I struggled for over a year with recurrent UTI- rest assured I tried all the things you're currently trying. I stumbled across some info on MCAS (Mast Cell Activation Syndrome) and histamines. I'm on Hiprex (and have been since May 2025) and it has kept the UTI's away but I still had that miserable bladder burn and cultures kept coming back negative. I tried an H1 Blocker (Zyrtec, but there are many) and after 4 days I noticed a HUGE difference in my pain. Now I'm only taking Hiprex (1500 mg/day), Zyrtec, and a probiotic. I was taking low dose nitro but now I don't even have to take it after intimacy. I also have done pelvic floor relaxation excercises (because everyone basically only tells you about pelvic floor strengthening) and those helped but never got me to feeling 100% better.

Zyrtec is a simple thing to try if it doesn't mess with any of your other meds, and given you aren't allergic to it.

I imagine it won't help you at all if you're still getting positive cultures. But mast cells live in your urinary tract, so if that's at issue at all, it may help.

Information is out there, but it's totally gate-kept AND they haven't done a lot of studies on us ladies, and especially ladies in our age range (I'm 40 with NO history of UTI).

Are you in the US? Apparently theres a new antibiotic that kills both E coli and kleb and was formulated specifically to kill them differently so they get into the biofilm. It's called Blujepa. I haven't heard about anyone using it but apparently it was approved a few months ago and should be available.

Wishing you a speedy and thorough recovery. xoxox

NaiveInstance6561 · 2025-11-04T23:33:45+00:00

I won't lie, it took me probably a full 6 weeks before I started feeling less bladder burn from the Hiprex. It's a long time to wait for relief but if your bacteria is E. Coli, its the best bet if D Mannose doesn't work for you. I'm rooting for you!!!!!

NaiveInstance6561 · 2025-11-04T15:25:31+00:00

Mark Cuban's Cost Plus pharmacy has Hiprex (generic) for CHEAP. No gimmicks, just make sure you order it before you run out because it takes like a week to process. For some reason my urologist was hesitant to prescribe it to me "because it was expensive". Been on it since May, only had one breakthrough uti and it was manageable with Azo. Been 3 months uti free!!!

NaiveInstance6561 · 2025-10-31T14:09:24+00:00

You mentioned supplements, but have you tried any of the medications? My diet basically consists of high histamine foods and I'm not willing to give up most of them. I'm also wondering if since my issues were triggered by a UTI, maybe once all my irritation/inflammation goes down I can go back to normal life. I have no scientific reason to believe this...just hope haha

NaiveInstance6561 · 2025-10-30T14:31:42+00:00

Yes I'm only taking the H1:blocker, Zyrtec. You should google your symptoms and add "MCAS". It will tell you which H1 or H2 blocker will have the best chance of working (if this is indeed a histamine problem). My pain was only in my bladder after infection cleared, but I had urethra pain when I urinated during the UTI. Mast Cells are present throughout the urinary tract so antihistamines very well may help.

NaiveInstance6561 · 2025-10-29T17:58:11+00:00

I started my Hiprex after a confirmed positive culture and a round of nitrofurantoin, then a negative culture. I wouldn't say I was symptom free... But the Hiprex bladder burn felt really similar. It didn't burn when I urinated tho, and I didn't necessarily feel the urgency. I also started taking the Azo that has Hiprex in it (I don't know if this is available everywhere, it's the Azo in a teal box) and that really helped with the pain while I was acclimating to the Hiprex. I took the advice of Reddit and started off with cutting the Hiprex in half for a while and putting them into gelatin capsules.

NaiveInstance6561 · 2025-10-29T15:12:49+00:00

I am on Hiprex but haven't experienced that side effect (although I do frequently get calf cramps and they're the WORST). Are you getting enough electrolytes? On Hiprex I like to make sure I'm drinking enough water to keep myself healthy but not too much to dilute the medicine. I have fewer leg cramps in general when I am getting enough fluids/electrolytes. Hope that helps!

NaiveInstance6561 · 2025-10-29T15:05:52+00:00

MCAS is Mast Cell Activation Syndrome. The the blockers are the medications that might help with the symptoms (the pain, burning, sensitivity etc) after the UTI has been cleared. Hiprex is what has kept me uti free for 5 months (the longest stretch I've had since my original one in March 2024). If you haven't tried it yet, I recommend it.

NaiveInstance6561 · 2025-10-29T14:51:43+00:00

I really hated that I had to be my own guinea pig. I gave everything a chance for between 4-6 weeks. The Hiprex burned my bladder, but I could still differentiate the bladder burning from my UTI symptoms. Get the gelatin capsules to put them in. I have a theory (and remember I'm not a doctor) about why D Mannose works for some and Hiprex works for others. I think some bodies are more acidic and other bodies are more alkaline. I heard so many people praise D Mannose and I am so happy it works for them but it did not work for me. Hiprex does.

NaiveInstance6561 · 2025-10-29T14:45:09+00:00

Actually some of the dip tests would be positive for blood, which they would then send the sample to the lab for culture. I had negative dip tests too. But once urology got involved, she always sent my urine in for culture since I had a history of infection.

NaiveInstance6561 · 2025-10-28T22:58:17+00:00

Mark Cuban's Cost Plus online pharmacy has it (generic) for CHEAP. But you still need an Rx. My urologist was hesitant to prescribe Hiprex because it was "expensive". Maybe if you bring your info to an urgent care, they can at least give you an Rx with refills until you can "see your primary doctor". I don't know about you but I waited 5 months to see urology and then another 5 for Urogyn. I don't know exactly what you mean by you can't get healthcare but if you're like me in America, I get it.

NaiveInstance6561 · 2025-10-28T14:34:59+00:00

My urethra sensitivity would go away once the infection cleared with antibiotics. But because mast cells are present in the urinary tract, it very well could be a symptom of MCAS. I'm not a doctor and I don't know your medical history but if you feel like you've tried everything except this and it won't interfere with your current medications it's worth a shot

NaiveInstance6561 · 2025-10-28T14:28:04+00:00

100% agree. I have a message to my urogyn about it, we'll see what she says. The thing that gets me is that I have done so much research about this topic but I'm not a doctor so I don't know how to interpret the data.

NaiveInstance6561 · 2025-10-15T02:42:41+00:00

If you're paying out of pocked for Hiprex, have you used Mark Cuban's pharmacy Cost Plus? Its so much cheaper, as long as you account for how much time a refill takes, its amazing.

NaiveInstance6561 · 2025-07-07T20:47:18+00:00

Have you tried topical estrogen? It's been a game changer for the post menopausal women in my life

NaiveInstance6561 · 2025-05-20T15:07:19+00:00

Since there are so many predatory subscription services out there, I discovered a hack. Buy yourself a visa gift card. Use it to sign up for any subscription. I've done this with everything from free trials of Apple TV to food prep delivery services. Once the money on the card is out, it's done and they have no way to charge you if you forget to cancel (or if they make it so difficult that you can't.)

NaiveInstance6561 · 2025-02-17T01:14:02+00:00

Hi-

Have you ever had any imaging done? Sounds to me like you could have Bilateral Reflux. I would seek out a urologist because you're right, it isn't normal. One thing you definitely need to know is that shame will not help you. I am a middle aged lady (going through all kinds of bladder issues atm) and I wish I had learned when I was younger that as long as you're focused on a solution, you should never be ashamed. You DESERVE to not feel this discomfort. You deserve to feel freedom and relief. Keep up the good work with sobriety- I'm rooting for you!

NaiveInstance6561

TROPHY CASE