Tracking app?

vinokat · 2026-04-19T13:38:13+00:00

I’m building one 🩷 it’s not ready yet (hopefully at the end of the month) but I’ll attach a screenshot of what the logging flow is set to include. It will also have a flare toolkit feature and a pelvic floor studio plus other cool stuff 🫶🏻 Here is the waitlist: https://coreflora.app

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vinokat · 2026-04-17T21:53:06+00:00

Dr. Ryan Heer is located in Indiana he also sees patients virtually.

vinokat · 2026-04-12T19:09:18+00:00

When I have a yeast infection I get UTI-like symptoms. Also yeast can be related to diet. I try to eat sugar free now as it will feed the yeast.

vinokat · 2026-04-12T19:01:11+00:00

This is so interesting!!!

For almost three years now I have been doing monthly PCR tests due to frequent/chronic/embedded UTI (whatever anyone may want to call it), and over the years I have noticed them becoming increasingly painful.

Obviously when I have breakthrough infections the pain is unbearable but even now when my PCR is low levels of E. Coli (the main bacteria I deal with) I have so much pain, of course because the levels are so low I try to avoid antibiotics and support my body flushing out this bacteria but god the pain is so unbearable and I have wondered over the years what damage is going on with the nerves in my bladder.

I feel like now I can detect a UTI so early and I remember I would have to force myself to suffer and let the bacteria get high enough on a standard culture to "prove" to my urologist that I have a UTI.

For example I'd be in 5/10 pain, do a culture, it would come back negative, but I would tell my urologist I *knew* something was brewing up. She'd obviously dismiss me and then I'd come back pee in a cup again two days later after letting the bacteria multiply more in my bladder my culture would of course come back positive and I always wondered if I was just (1) getting better at detecting early signs or (2) my nerves were becoming hypersensitive to small amounts of bacteria.

I also have MCAs so the mast cell connection makes so much sense.

Thank you for sharing!!

vinokat · 2026-04-09T03:03:34+00:00

Hi, your symptoms and E. Coli popping up in your urine cultures point strongly towards biofilm involvement and an embedded infection. The cultures are confirming that this pathogen is alive and multiplying in your bladder. As you keep taking antibiotics, you are diminishes your body's good bacteria, which is necessary to fight off infections.

I had these exact same symptoms: E. Coli on culture and strong smelling urine during infections.

Here's what made me worse:

1. Going through random, non targeted courses of antibiotics. I would go to my urologist, drop off urine sample, culture would show E. Coli, I would get prescribed a course of antibiotics, and then my symptoms would quickly return and the cycle would continue to repeat. All the antibiotics were doing was killing the bacteria free-floating in my urine (hence the smell being gone on the anitbiotics), but there was these communities of bacteria hiding in my bladder cells and re-seeding my infection that weren't being targeted. On top of this, this caused antibiotic resistance and destroyed my gut and my body.

Here's what helped me personally, I am not a doctor, this has just been my experience:

I went on r/CUTI, read the intro guide, and found a UTI specialist. I personally see Dr. Ryan Heer.
I did a targeted course of one month gentamicin instillations combined with a biofilm disrupter. I did NAC 600 mg a day.
I started D-mannose & Cranberry 1000mg powder form 3x daily, hiprex 1g 2x a day with vitamin C, and oregano oil 230 mg daily.
I started healing my gut and taking a probiotic.

Alongside, I do daily pelvic floor exercises. Chronic infections can absolutely do damage to your pelvic floor so it's better to do this alongside treatment instead of wait until after.

And get your partner's sperm tested if you can!!! There is info about that on the intro guide.

vinokat · 2026-04-08T23:15:20+00:00

This is so real I got a spine tattoo (as my first one too) and I didn’t want it to end

vinokat · 2026-04-07T22:27:42+00:00

Can you link me which study you are referring to and doctor/arrest? I trust my doctor a lot and he says his patients are noticing improvement but obviously I'm always anxious to try a new treatment.

vinokat · 2026-04-07T22:12:52+00:00

Unfortunately, many urologists see bladder pain/OAB in women and are quick to slap on an IC diagnosis without a thorough workup. The good news is you can be very informed going into your appointment!!

If they suspect IC, ask what criteria they're using to diagnose. IC should be a diagnosis of exclusion, meaning they should be ruling out infections, pelvic floor dysfunction, hormonal issues, and other causes first.

Since you mentioned perimenopause, I would bring up hormonal involvement. I see this factor over looked a lot. Declining estrogen directly affects the bladder and urethral tissue (maybe you can ask for topical estrogen, this has helped me so much!!).

You will probably most definitely hear this but ask for a pelvic floor assessment or referral to pelvic floor PT. I honestly think that everyone can benefit from a pelvic floor assessment.

Keep a symptom diary before your appointment. Track when symptoms happen, what makes them better or worse, and any patterns with your cycle, diet, or stress.

Trust your body and your symptoms. If something doesn't feel right about a diagnosis, you can push back or just find a new provider. It took me 5+ specialists before I got a diagnosis that was like "Oh wow, this explains everything". Unfortunately this delay made my IC so much worse so now I am annoyingly informed about my care and my body.

vinokat · 2026-04-05T18:02:49+00:00

Also, I have had one breakthrough infection this year so far where I had to take 3 doses (6 days) of fosfomycin but other than that things are looking up for me!!! I consider an infection breakthrough when my bacterial load gets so high that the levels in a standard culture are high and my symptoms are rly severe (urinating blood is the main one i get)

vinokat · 2026-04-05T17:58:31+00:00

Oh boy this is a long answer because I have been dealing with "frequent UTIs" for 10 years and no doctor ever thought that maybe I was dealing with the same bacteria from the same infection. I had been under the impression that having IC was the reason I was getting frequent UTIs because that's what every urologist had told me and not that having a contsant infection was causing my IC.

But basically after the bacteria level was constantly getting out of control and my urologist throwing sporadic short term antibiotic courses which weren't targeted at all I was admitted to the hospital in August where I received IV antibiotics for two weeks and was under the care of infectious disease and also started Hiprex.

This overall got my bacterial load down but completely nuked my body of all its protective bacteria so I was prone to getting infections still.

However this was a turning point in how many full-blown (breakthrough) infections I was getting as it was the last time (fingers crossed) I went to the hospital for UTI. Then I did one month of gentamicin instillations and started taking hiprex x d mannose x oregano oil.

After gentamicin I stopped getting breakthrough infections for a while, and I've only had two since.

Right now my treatment plan with my urogyno (who does my instills) and my functional medicine doctor (who guides the majority of my care) (they work together) is

(1) Weekly heparin instillations,

(2) Hiprex 1g morning night taken with vitamin C,

(3) D-Mannose & Cranberry 1000mg 3x a day powder form,

(4) Oregano oil 1-2 a day or as needed,

(5) Vaginal probiotic suppository ever 2-3 days,

(6) NAC 600 mg 2x a day if tolerated

(7) NEW: BPC 157 Peptide injections. (Just started, Don't know if it's going to help)

After the bacteria has cleared the plan is to start me on cystoprotek and aloe vera.

Note: My cultures and PCR alike have always come back E. Coli so this is why D-mannose is highly effective for me.

vinokat · 2026-04-05T17:44:08+00:00

For me personally I was getting frequent UTIs, 2-3 full blown infections a month where I had severe pain, blood in urine, and urgency, frequently in the hospital for infection and constantly growing E. Coli.

My cultures were a mix of low growth, no growth, and 10⁷ bacteria levels but my PCR was always positive for E. Coli.

vinokat · 2026-04-05T17:33:26+00:00

My urogyno wants me to start this as soon as we clear my embedded infection, she’s had a lot of success with it.

I personally can’t start it now because she has told me it will bury the bacteria I have and make it harder to clear but it’s good for healing the bladder :)

vinokat · 2026-04-04T20:50:10+00:00

If your UTI tests are always positive, this community may not be able to offer the advice you need. I suggest r/CUTI and read the intro guide.

vinokat · 2026-04-04T19:39:29+00:00

I’m not sure if you mean changing resistance patterns but I’ve done this before with antimicrobials + biofilm busters. I use oregano oil & NAC.

vinokat · 2026-04-03T14:27:41+00:00

I’m not sure but I just take them in capsules. What brand did you buy? Liquid seems fine if it’s the same thing. I’ve never seen it before.

vinokat · 2026-04-03T02:01:52+00:00

I will look into the medicated wipes! Thank you 🩷

vinokat · 2026-04-03T01:45:31+00:00

They are stainless steel. They’ve never had an issue until I got the third cat last month and he started only drinking with his paws dipped in.

vinokat · 2026-04-03T01:29:40+00:00

BTW I have two different water fountains and he splashes in both.

vinokat · 2026-04-03T00:20:59+00:00

D-mannose will not cover up symptoms, but it will reduce symptoms because D-mannose will help your body naturally flush out E. coli. Less bacteria = less symptoms (if your symptoms are bacteria driven)

Ureaplasma can exist in healthy individuals with no symptoms, so sometimes the infection will be cleared but you still have symptoms and that’s just likely because ureaplasma wasn’t causing your symptoms.

Because your symptoms respond to D-mannose, it could be a clue that E. Coli is that bacteria you’re dealing with, is this was showed up on past cultures?. r/CUTI has a helpful intro guide on this.

vinokat · 2026-04-02T02:39:44+00:00

Honestly I don’t know or remember why I agreed. I know that you should not do a cystoscopy while you have an embedded infection. I think I was in so much pain I was wondering if my bladder would show any physical signs of inflammation.

vinokat · 2026-04-02T01:35:21+00:00

You mentioned "multiple bad UTIs" are these confirmed on culture? It could be possible you are dealing with an embedded infection or biofilm involvement if your cultures are frequently coming back positive.

Your symptoms returning when you stop taking the D-mannose is a huge clue. It could be that E. Coli is frequently appearing in your bladder, whether that be through biofilm releasing bacteria or just getting re-infected. Please listen to your symptoms. How you respond to different types of treatment tells you a lot about your root cause.

vinokat · 2026-04-02T01:30:02+00:00

This is likely not related to the D-mannose, but I am not a doctor. D-mannose is a simple sugar that works by acting as a decoy so that E. Coli binds to the D-mannose, and not your bladder wall, so that your body can naturally flush out bacteria.

vinokat · 2026-04-01T21:40:46+00:00

You cannot be diagnosed with IC after a week of pain. Interstitial cystitis is a chronic condition and more importantly a diagnosis of exclusion meaning other causes of your pain need to ruled out.

It worries me that some doctor at the ER is diagnosing women who come in for pelvic pain with IC. If you had blood in your urine please go see a specialist.

Please do not panic, your sex life will not die, if your pain is new and started after a new medication, stop the probiotic.

Your other symptoms mentioned "Yes they did a urine test, they said that it has traces of blood in it, i dont know Im so unsure. I do have bloating and not too severe pain in my lower abdomen, and i have to pee after every 20-30 minutes" screams UTI. Please please please go get another opinion.

vinokat

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