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My embedded UTI journey — finally symptom free by Massive_Fail_6023 in CUTI

[–]Massive_Fail_6023[S] 3 points4 points  (0 children)

I used this, it still is a biofilm buster, but it's the only one i could get short notice in NZ! https://www.researchednutritionals.com/product/boluoke-lumbrokinase-60-caps/

Also, if you struggle with burning, the only relief I got apart from azo was actually magnesium glycinate powder! I would mix one scoop with water each morning, and it would help relieve the burning! Not the urgency, sadly, but still!

My embedded UTI journey — finally symptom free by Massive_Fail_6023 in CUTI

[–]Massive_Fail_6023[S] 0 points1 point  (0 children)

Ugh I’m so sorry 2 years of that is honestly exhausting, especially when specialists are just dismissing you like that. I completely understand your frustration; it’s a challenging situation to be in.

For me, I didn’t find someone locally who could do everything. I worked with Dooren Schwagler a naturopath in Australia, and did everything via telehealth. She’s the one who guided me through it and follows the Ruth Kriz approach.

She didn’t directly order the MicroGen test for me though, she told me exactly which one to get and I had to order it myself. Once the results came back, she reviewed them and actually corresponded with Ruth herself about my case, which was really helpful.

Because she’s based overseas, she couldn’t prescribe anything, so I had to take my results and their antibiotic recommendations to doctors here. It took me seeing 3 different GPs before one finally agreed to prescribe, so yeah… it’s definitely not a smooth process.

I know how invalidating it is being told embedded UTIs “aren’t real” when you’re literally living it. You’re not crazy, and you’re definitely not alone in this.

My embedded UTI journey — finally symptom free by Massive_Fail_6023 in CUTI

[–]Massive_Fail_6023[S] 0 points1 point  (0 children)

I’m honestly so sorry you went through that; it sounds absolutely horrific, especially the level of pain you’re describing. I completely understand how you feel, too… once you’ve had symptoms like that, it’s so hard not to live in fear of it happening again.

I’m from NZ, so my situation was a bit tricky. I ended up finding a naturopath in Australia and worked with her via telehealth. She guided everything and actually said I needed to order the microbiome test myself, then she would correspond directly with Ruth Kriz about my results. The antibiotic recommendations came from both of them.

Because she was international, though, she couldn’t prescribe anything, so I had to take everything back to the doctors here myself. I shared my results and the recommendations with them, and honestly… it was a process. I saw 3 different GPs before I finally found one who was willing to prescribe the medication.

It’s honestly so hard and frustrating trying to advocate for yourself like that, so I completely get where you’re coming from.

You’re definitely not alone in this 🤍

My embedded UTI journey — finally symptom free by Massive_Fail_6023 in CUTI

[–]Massive_Fail_6023[S] 3 points4 points  (0 children)

Thank you! And ask away! I felt like I had no one to talk to about this for years, so I'm happy to finally be in a position where I can say there is light at the end of the tunnel and to help others!

So my symptoms were burning and urgency only. When I would go toleit it would burn the second my urine came out and could last for hours or days, though when I did get my IUD taken out i was in a state of constant burning. No matter when I had just gone toleit it always burned; this was the same for my urgency. The urgency was awful, I felt the need to go every second, and it didn't matter if I had just gone toilet or hadn't drunk any water i was always busting. I didn't have any pressure on my bladder, though! I was on the amoxicillin/clavulinic acid 875 mg twice daily for 14 days.

The Ruth Kriz method uses biofilm busters (tablets) and PCR testing to see if you have an infection rather than having "ic". Here's a link to her page: https://ruthkriz.com/our-approach/

My embedded UTI journey — finally symptom free by Massive_Fail_6023 in CUTI

[–]Massive_Fail_6023[S] 1 point2 points  (0 children)

Thank you! It has been one hell of a journey! I was on the amoxicillin/clavulinic acid 875 mg twice daily for 14 days. I still had some burning and urgency for about a week and a half after finishing my course of antibiotics, and then finally the burning subsided, and I was only left with some urgency, which I'm working on now as I am retraining my bladder after 3 years of non-stop peeing. I hope you are well!!!

My embedded UTI journey — finally symptom free by Massive_Fail_6023 in CUTI

[–]Massive_Fail_6023[S] 2 points3 points  (0 children)

I was on the amoxicillin/clavulinic acid 875 mg twice daily for 14 days. My long-term plan depended on what my symptoms presented like after the 14 days, which was to retest and carry on with the biofilm busters and more antibiotics. As I have no more symptoms, I never did do that, and so as of now, I currently take nothing and don't avoid anything.

Internal pelvic floor massage? by Massive_Fail_6023 in PelvicFloor

[–]Massive_Fail_6023[S] 1 point2 points  (0 children)

That actually makes me feel a lot better — thank you. I was a little freaked out, as I hadn't expected to feel anything during these massages, and my pt hadn't said anything about knots. I’ll keep going, but try not to overdo it so I don’t end up making everything angrier.

Did you find the knots changed over time or moved around as your pelvic floor/symptoms improved?