#embeddeduti

[theutiarchives]

08. TWO MONTHS

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So, 8 weeks have passed since fulguration. As I was warned, and as I wrote in the previous post, I could have a couple of UTIs during the healing period - not to freak out about them. However, having an acute UTI for me is precisely the sort of thing that will always freak me out, they’re my problem after all, and not only the infection itself, but the cascade of side effects I get from antibiotics now, and the exhaustion I feel for a couple weeks after them (at least). For more details, see post 02. I’ll mention my “expectations” regarding fulguration at the end of the post!

I had an acute UTI during week 6 (1,5months). So, instead of a huge text post, I prefer visuals - hopefully it will give you a more concise picture of how things went. I’ll let you be the judge of what might have triggered the acute UTI I ended up having:

Bam. Post diarrhea UTIs are now a staple for me (hello IBS induced by too many antibiotics). I felt so so stupid for not having taken S.Boulardii more rigorously for the previous weeks...Was it the sugar that led to a vaginal change, again, as in the past? (Haven’t eaten any sugar in almost 6months). Was it the stressful day on top of the sugar intake previously? Was it the sugar that rushed the dysbiosis and ended up in a diarrhea 6 days later? The perfect storm: stress, sugar and diarrhea, on top of apainful bladder after the scab came off? What I do know is: I tend to have UTIs after diarrhea. So I should have known better, and try to prevent them more actively.

It was a mess: couldn’t culture, was out of town (precisely! they always choose the perfect days to come!) although I did my best to try and get a culture before starting antibiotics. Felt horrible, on top of a recently fulgurated bladder. Cried. I cried afraid fulguration didn’t help at all, despite me trying to keep my expectations neutral so far and not think about it too much; I cried because I was already bloating by the hour again on antibiotics, my energy was going down, fatigue settled, and the symptoms didn’t improve much even on antibiotics - until I managed to switch antibiotics - I very very probably had enterococcus faecalis as I always do after diarrhea. My gut was a mess, had blood in the stools again after the last few months being ok; had it continued and I would have been to the ER, although I know it’s not C.Diff, but inflamed gut mucosa. Ate plain boiled rice for days. Started, obviously, max dose of S. Boulardii and even now I'm still taking 1 every day. Then period came and this time my cramps were super painful - I didn’t find it odd at all considering everything. But because of my gut I don’t take any ibuprofen or similar, so I had to endure them. By the 5th day, last day of my period I was so dizzy. Honestly the entire week and a half was a nightmare and I was home alone precisely that week - which ended up being the best thing because this way no one saw how I looked. BUT with the same emphasis, I can now say I am very happy it all subsided. And my bladder for the first time since the procedure feels like nothing happened in there. Zero soreness near the 8th week mark/2 months! *fingers crossed*

Went to another urologist and gastro doc, to no real benefit at all. Have a functional nutritionist booked and an Integrative Gyno (both only in January) and still on the waiting list to a funcional medicine doc late April next year. Every other doctor so far, (conventional) didn’t help at all when it comes to my gut and honestly urologists didn’t either. I still rely on my internist doctor who is the one who does prescribe me 8day courses of the abx I respond best to, and actually believes what I say I feel. Which is a rarity when it comes to being heard about anything down there (sorry if any doctor reads this, but it is my experience). So, I’m keeping up with my usual care, now doubled when it comes to gut - no diarrhea, that’s “guaranteed”. And added a few more things to my “regimen”. Hope I can say next month: no UTIs!

Finally, I feel I need to write this. It’s about Expectations: For many with an embedded/chronic infection and 24/7 symptoms, talking about “success” with fulguration means : the stopping of the constant symptoms. In conjunction or not with continuous antibiotic therapy. And then managing to avoid UTIs by continuing to take post coital antibiotics (for example) for some time at least, or Hiprex for those who tolerate it ; Or nothing! And although I’ve been there, with symptoms 24/7 (post 02.), I can’t do antibiotics like that anymore. I can’t do any of that, hence fulguration (Post 03). My gut is very damaged, plus I do have permanent side effects - It’s been 11years after all. For me, success with fulguration will have to mean less acute/recurrent UTIs, so I can avoid antibiotics as if they’re the plague (because they are to me now) especially after intercourse, but not only. Already 10 years of intimate life were ruined. I’ll maybe write a post about that one day even - the perverse side of rUTIs.

(as an European non-English native please feel free to correct me) Take care 🌿

[rosedemonart]

Hey guys, just updating... Still recovering.... been a really rough few weeks with relapsing.... slowly regaining my senses and pain dulling back... but have doc visits and a few ventures in hopes of curing me. Which is a long long road that seems impossible as ive not found one person yet who has beat an embedded chronic uti before. And australia doesn't even have any protocols in play to deal with it leaving thousands of woman suffering in silence and dying. Its a painful journey that really affects the mental health not knowing how long you have.... and hoping that you can some how miraculously beat it and that a doc is willing to listen and help and try😭 Wish me luck these next 2 weeks, in progress of getting health providers to listen. If it wasn't for the chronic uti australia group I'd be a lost soul. 😭 #chronicuti #utiaustralia #embeddeduti #silentillness #womanshealth #misscherrymartini #sickgirlsgang #sickgirl #nocure https://www.instagram.com/p/CLk2_39gmwS/?igshid=1cmi04ep0f00l

[theutiarchives]

10. FOUR MONTHS

This last month it feels like time has stopped. So slow... But my bladder has been ok. The good part: I am able to eat oranges and the occasional glass of wine, and I feel nothing in my bladder. Yay! The not so good part: I took one single probiotic (random mixes of lactobacillus) weeks ago, and my bladder instantly reacted - urgency and frequency. Weeing a few drops but feeling bladder fullness. Lingering irritation. Lasted 48h total...Just like before fulguration. Still haven’t tried sex and I still won’t do it for the next month, it’s a huge trigger and I’m in no condition whatsoever of having to take a single post coital antibiotic let alone risk an infection. I wish I felt confident I could do it and risk it, but I’m not there yet. I kept talking my teas and avoiding stress as much as possible (last post). And I’ve returned to my yoga practice. My gut was a disaster during Christmas and NYE, and not because I changed my diet but because I was still dealing with the consequences of the last antibiotic course I took back when I had an acute enterococcus UTI at week 5-6 post-fulguration. Blood in stools again, mucus, yellow greasy stools, and ofc, diarrhea. I was exhausted and all I wanted to do was to sleep. I’ve been better these last couple of weeks and so is my gut but I still have a long way to go. As I’ve tried to update in the Ig stories I’ve also been having consults, from internal medicine (with extensive stool tests and lab work) but I’m still waiting for results as some labs take weeks to process. The integrative gyno consult was amazing, and my vaginal flora was also tested extensively (also waiting for results). I went to my first TCM consult ever, and had the weirdest reaction to the first couple of needles that he put somewhere in my belly: my kidneys instantly hurt! So, so weird. Got this sharp pain and then a dull pain that lasted a couple of hours after the acupuncture session. Brought further bespoke herbals to take (gut+bladder). I’ll continue with the sessions and phytotherapy for 2 months. I have a gut-focused nutritionist next week. All of this combined is expensive, plus the supplements and herbs, etc. Maybe one day I’ll do a separate post on what I took/am taking and what I think worked or not. I’m keeping my mind open and I am very much willing to do everything in my power to help my bladder, gut, and reproductive health. I believe I have to tackle all 3 at the same time, because they’re all connected. Wish I could do a more in depth post about results etc., but this is all taking forever. I have to be patient. But I am however celebrating this post with an orange for desert, and I can’t tell you how much I missed oranges. So, “an orange to that”🥂.

(as an European non-English native please feel free to correct me) Take care 🌿

[theutiarchives]

09. THREE MONTHS

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So, it’s been 3 months. Bladder wise, I am UTI free, only noticing before my period slight vaginal flora changes that give me some bladder discomfort - just like before fulguration. And that’s something I’ve been dealing with for a while, not new. I haven’t tried any of my previous bladder triggers: sex, alcohol, generic lactobacillus probiotic mixes, orange juice/vit C, wine, some B vitamins, iron & other minerals. So, the only UTI I had was at week 6, and after a diarrhea (something that would also give me a UTI in the past).

What has been considerably worse since my last UTI, is my gut. It’s a mess and I’m on the process of figuring out how to deal with it. I’ve been refused stool testing (including testing for C. Diff,). Random lactobacillus probiotic mixes are out of the question as they give me UTIs, besides horrible SIBO (which I never ever have otherwise), terrible brain fog (lactic acidosis), bloating, and even more gut problems. I’ve been taking spore based probiotics that I’ve been fine with and S.Boulardii, but that’s just been avoiding the diarrhea - my stools are still visibly mess. But I won’t go into detail about this because it might be TMI for some. Point being: it hasn’t been easy to tackle the gut and book specialist appointments (the ones that deal with this are so overbooked I’m being forced to wait for months). Gastroenterologists have been useless, did 2 colonoscopies (inconclusive) but still refuse stool tests and give me zero advice besides “do yoga” (which coincidently I already do), eat "healthy" (duh!) and take the probiotics I can’t take. I'll be testing for C.Diff soon, out of pocket. Yes, it’s maddening. Don’t understand why I have UTIs on random mixes of lactobacillus/bifidum bacteria probiotics - no doctor does. But apparently (except for those with SIBO/lactobacillus overgrowth) everyone is able to take them in this community. So don’t worry about probiotics making your bladder worse, it seems to be something very particular to my situation. Spore based ones are 100% ok for me and do their job. Just haven’t been enough. Diet hasn’t been enough. Miso, tempeh, sauerkraut, etc., bone broth, collagen.. I'll keep at them. Any ideas? Shoot, I've been researching alone for a long time, but I'm all ears. My hair is falling for 7months now. Iron is low. Can’t risk taking it because in the past I’ve always had (raging!) bladder (fungal) infections on them*. (*If you didn’t know: Iron feeds bacteria, if you have them even embedded, etc. They compete with the host for iron).

Next steps: 4th January - new internist (and insist on comprehensive stool tests, if not, will pay out of pocket) 19th January - Integrative gyno (See how my HPV is, tackle vaginal flora, periods, discuss pregnancy options/prices if I still can’t have sex - I’m 36); 10th February - Gut focused nutritionist, that works with stool tests. After March: as soon as an opening comes (THAT overbooked), functional medicine doctor.

So.. bladder wise I’m ok - but so have I been in the past if I had no sex and kept avoiding all bladder irritants, and drank my teas. And I’ll have to keep doing that (and living like a nun) because I’m in no condition whatsoever of risking a UTI and having to take more antibiotics.

I wish everyone Health for 2022. That’s all. Truly, with all my heart. (as an European non-English native please feel free to correct me) Take care 🌿

[theutiarchives]

07. ONE MONTH

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Fastest post ever: I'm doing OK!

Continuing to take the best care possible on a daily basis, and trying (to my best ability) to avoid an acute UTI. Looking back now the worst/more sore period was definitely the 1st week post op; although very much still sensitive during the 2nd week; bladder soreness and occasional pinching went down significantly during the 3rd week, but basically uti-symptoms free. I did not have the shedding or discomfort that is normal to occur during weeks 3 or 4. I was also told this was a possibility - to feel normal. It was my case. However I know I’ve got a long long period of recovery still ahead, and things can change at any month - Although I’m really hoping I remain stable.

My gut only started to calm down week 3 after the procedure (antibiotics) and with a lot of work on my part. Tinnitus is pretty much the same (not great) and the odd bump below one knee I mentioned last post, that came out of nowhere the next day after the procedure, is still here and hurting. Bladder wise, I am 100% symptoms free, like nothing happened - clear urine. Ok, occasionally I’ll see this ridiculous little white bits of skin but really small and I feel nothing. But for example, I don’t use tampons anymore (they’re not uti-friendly) but I do use vaginal probiotics, and when inserting those (sorry TMI), I can clearly feel the bladder: it gets physically uncomfortable/sore. Even the urethra! So, many months of recovery for sure. I’ll do an update by the end of the 2nd month!

(as an European non-English native please feel free to correct me) Take care 🌿

[theutiarchives]

06. TWO WEEKS

❦ Here I am, 2 weeks later :) If you’re not in the mood to read a long post but still want to get an idea, literally read the highlighted parts only!

I'll advise anyone to see the fulguration video to get a better picture of what was found - not sure I can post it here, it's a bit graphic, so I uploaded to Ig @ "the_uti_archives". But overall, I had leukoplakia, calcifications, a weird looking 'pocket' of some sort of infected tissue, and glomerulations. It’s been 2 weeks since I had fulguration, and overall, so far so good.

But here's a more detailed version of how things went: • First 2 nights my bladder physically hurt. Nothing unbearable, but enough not to let me fall asleep easily or I'd wake up when changing position; • For the first 5 days, I had strong kidney pains. Nothing new to me, so I wasn’t “scared”. During the day they were manageable, but at night were much worse, and the main culprit for not letting me fall sleep/sleep well. They gradually subsided, and I was back to normal after. • I had and still have increased frequency, that got a little worse, specially during the first week. I do drink 2L/day and of course that justifies some of it. I have Frequency, but not Urgency. Before fulguration I’d usually go about 15x/day to the toilet (for the past few years). I slowly got used to it, even without active flares. Now it’s just a few times more. I don’t usually wake up at night though, and the first week I had several nights waking up at least once to go to the toilet - by the 2nd week I was ok at night. But I feel confident that it will slowly subside too, in fact I think I am already better.

• Things are sore down there, bladder wise, so it's only natural to feel uncomfortable if I try to walk normally and move around much. I practice yoga, for example, but I'm not getting near the mat anytime soon, as I can feel that the bladder doesn't like to be "shaken around" now. In fact, for the first week I'd walk really slowly, avoiding "hitting" the floor with my feet (hard to articulate in a second language!). It's normal, and I know this will pass, and in fact, by day 10 after the procedure, I was less sore and able to do groceries (like an old lady though!) • Peeing was more uncomfortable in the first week than the second, as things felt more "raw". Although there are definitely times when things feel stingy/raw even now! But for me, as I didn't go with an active infection, it's way more manageable than a UTI. And as soon as I finish, the bladder is 100% comfortable. No lingering symptoms whatsoever (ok, just the overall soreness, but that's nothing). • I rested, A LOT. Took a week off work after coming from Turkey and I'm very glad I did it (these 2 weeks were literally all the vacation time I had this year, yay!). These were the main things I felt during the first 2 weeks that are directly related to the bladder/urinary system alone. No need to read more if anyone with recurrent UTI's sees this in the future and is looking for examples of progression of weekly symptoms (note this is my personal experience and things can be wildly different for everyone, especially for those who undergo fulguration with active symptoms).

However, I come with a heavy baggage when it comes to antibiotics and gut issues - and not only (post 02). And of course a week's worth of them after the procedure left my gut in a very messy state. Besides the gut, my tinnitus skyrocketed (as expected) and then I had a few more odd symptoms, that so far I don't know anyone else who had them post-op: what it looked like sore glands or lymph nodes in particular points in my jaw that lasted for a few days (gone, I'm Ok), lungs/rib cage hurting around day 5 for a few hours (probably anesthesia? Gone, I'm Ok), and the weirdest: some sort of structural change in a bone below my knee! Looks like the bone grew a "pea" - a painful hard bump. Inflammation is real people, the body always finds a way to unload some of it somewhere and get you even more problems. I'm tired of doctors, so I'm just giving myself time to see if this subsides or if it is weirdly connected to some very specific hip joint pain I've had for almost a year now, that curiously also gets way worse around infections (=inflammatory states). You do learn to be suspicious and on the lookout after a few years with any chronic problem.

Anyway... Bloated to the moon and back and unable to take probiotic supplements (the "why" is on post 03.) was definitively the worst collateral damage. Going to the toilet hasn't been pleasant, especially the first week. But I was mentally prepared for this, and I think all the right food and all the preparation I did months before fulguration paid off, because I've had much worse IBS crisis in the past. And my gut didn't bleed this time, yay! The only probiotic supplements I can tolerate now are Optibac for Women with just those 2 (very important) strains. And also, my dear good yeast-friend, Saccharomyces Boulardii (no diarrhea, and helps e.coli numbers down in the gut). No yogurt with added probiotics or Kefir either. Only naturally fermented foods like pickles, miso, etc. Which is good, but very little in comparison to what I needed. I'll have to give it a few good months to see if I can try to incorporate them slowly, and iron too, that I am so desperately needing, and see if they don't cause me neither a bacterial or a fungal infection anymore (post 03).

I am however, and also as usual, a bit tired and lacking energy and focus after a course of antibiotics, and this was only a weeks worth of them. I know if I have an acute UTI anytime soon and have to repeat them, I'll be "on the floor". A few rough weeks ahead are expected, and I was warned, they're part of the healing. But I am doing everything in my power to keep acute UTIs at bay - although they can happen in this period and I won't let them bring me down. But I'm doing my personal protocol and trying hard to avoid them. Not sure if this was a very inspirational post but I'm a bit tired like I said and even more now with work on top of the healing, but what's important is that I'm overall ok and things are going well so far. Hopefully, I'll be able to do a quick post on the 1 month mark and still be UTI-free. We'll see! (as an European non-English native please feel free to correct me) Take care 🌿