#bladderfulguration

[theutiarchives]

12 MONTHS

Topics: Bladder; Fulguration; Cervix/HPV current status; Gut and stool test results; Adenomyosis/period pains; Tinnitus/Vertigo;

BLADDER: 365 days after fulguration, I had an infection - a karmic joke to celebrate? After fulguration I had (an expected!) infection when the scab came off, and that was it. I did experience a few false alarms this year, shedding and other discomforts, and surely felt the ups and downs during the healing phase. But this was different, I can say this was my “first” infection after fulguration. However, being almost 10 months free of any, and being able to have intercourse without triggering a new infection - because now dmannose is also able to prevent one (e coli was my main post coital bug) - is an *amazing* result for me. This infection wasn’t triggered by sex but rather from a temporary gut dysbiosis (crap food&a brownie)... and next day my bladder was angry. I instantly knew it was infection. Not a false alarm. I panicked, but before reaching for any abx, I decided to see if I responded to dmannose, and very luckily, I did. It was e.coli.. if it were enterococcus(also usual for me), it would have been a lot trickier. My e.coli type clearly changed, as I didn’t respond to dmannose before fulguration and now I do? Still puzzled. By the 3rd day of taking 2g of dmannose in a small cup of water every 2h most symptoms disappeared, but the infection was still there.. I could feel it wanting to come back every few hours, so I jumped to my herbals and took tons of teas and the did several liquid plant extracts, plus high dose Lipossomal vit C, etc. And that resolved the rest. In 7 days I was 98% ok. I couldn’t believe it! No abx!

FULGURATION: Despite my overall improvement this last year, I’m honestly not convinced at all fulguration alone did the trick. It was potentially a helping step, amongst many others I took - and some were far harder than taking any pills or supplements. As many of you know I’ve changed a lot of things in my life, from stress management to diet to exploring daily herbals and other antimicrobials for years now, especially since 2020 although I technically started exploring non-abx options before. In 2021 I started to reduce the number of flares, so it was starting to pay off, but it was a year heavily marked with oral prednisone (corticosteroids) for months (I started them in 2020). My face was painfully deformed by a type of Angioedema that was triggered by abx, and then the prednisone itself made me have even more infections - a loop from hell. Also dealt with chronic Candida. Further diet changes and other things were needed (Yeast post). But as that went away, I continued to support my gut (=immune system) to the best of my abilities, and I avoided abx as much as possible, before and after fulguration. Spent 9 months on total without intercourse, 6 of them after fulguration, so I wouldn’t risk any infection while healing. I ate a *very* clean diet, tons of varied veggies, day in and day out, rain or shine, alongside daily teas and other herbals/supplements; the diet changed over time, I adapted it as my gut managed to digest things that it couldn’t at first (fiber) and for the first few months. Abx truly recked my gut, especially the cephalosporins for the past few years, but an overall 11year history of *very* frequent abx can’t be ignored. I also took my fair share of abx as a child. And I was born cesarean (less immunity) and was breastfed for little time. There are no miracles. It will take time to go back to my former “gut self” (or rather, a better gut self…) although I’m much better now. I didn’t take any abx this year so far: This alone, feels surreal. Responding to dmannose also feels surreal. Avoiding acute flares after intercourse, is ..beyond surreal, can’t even put in words. Like it’s not happening to me - but it is! It’s the first time in my truly “adult” life (I’m 36!) that I *could* have intercourse with relative peace. But…

HPV: One of the biggest challenges I’m still facing is my cervix (previous posts). I have downgraded my lesions from CIN1 to ASCUS, and from 3high risk strains I’m now down to 1. However my cervical pains haven’t decreased much and intercourse is very limited and adapted to what I can cope - which is little to be honest. Had I supported my immune system from the get go with the antivirals that allowed me to *now* downgrade the severity of the infection, and I probably wouldn’t be in this predicament. Especially because persistent high risk HPV with cervical pains is not a good combo at all to have, and my grandmother died precisely of this. So, I have C history here in direct family. But I was a mess with my bladder and side effects from antibiotics so I didn’t focus on HPV as I should back in 2020. Worrisome also because I’m almost 37 and haven’t become a mother (but that’s another layer of impact all this has).

GUT: As for my gut I got my comprehensive stool test results back and the diversity range is good although it has room to improve. And no large colon dysbiosis at all. Excellent butyrate levels, etc. (See Gut posts). Still have Kleb overgrowth and little Lactobacillus, so there’s work to be done. Note that just back in December I had my gut in shambles, blood in feces, white mucus, yellow runny stools and overall foul smell with multiple runs to the bathroom daily - and I didn’t take a single Lactobacillus or Bifidum probiotic to get this result now. I can’t, they give me SIBO symptoms and bladder infections (little did I knew…). So, no "gut supplements" at all actually, although I’ve tried. I had to go with food and food only to try to start to reverse years of abx damage - although now I know it’s not enough: So where are my IBS symptoms stemming from? Another test was done: SIBO breath test. It came back with very high Hydrogen dominant SIBO. I was sort of shocked to be honest - because apart from the very negative reaction to probiotics, I don’t have (anymore, and for many many months now) any bloating, digestive discomfort, or major gas. Or any, gas, to be honest. But there it is: it’s SIBO. So my “gut issue” stems from the small intestine. Many with my levels have a lot of symptoms- but I don’t, hence it took me ages to do this test. Actually took me ages to find someone who would prescribe both tests…

But it was a very valuable piece of information. The only thing that has been worrisome is my weight loss. I’m prone to IBS-D, or SIBO-D / Hydrogen dominant and this is many times (although there are exceptions) associated with progressive weight loss no matter how many calories one eats, and now I’m very underweight. Malabsorption is an issue as a lot of nutrients aren’t being absorbed and vitamin/mineral deficiencies are to be expected with time. Some I already have, common with SIBO sufferers: iron deficiency. My B12 is plummeting, folate levels dropped.

There is a strong link between any gut dysbiosis and bladder - I’m very much in this category I believe. So if I want to remain infection free I have to tackle this. I’ve had one period in the past that I remained infection free for quite a while, and then it all returned and with a vengeance. So I’m not resting this time thinking this is a solved issue. Regardless, SIBO is an entire new journey in itself, a quite tricky issue to solve, but it has to be done or my health will continue to deteriorate. And I already feel underweight and fragile enough as it is, with little energy to spend each day.

And I will lastly say this. I know antibiotics save lives, and are very much needed for many. But all the damage I’m dealing now stems from them. And it is no joke. Treatments will be expensive, take a lot of time, patience and effort. My body, my immune system truly was shot. I’m bones and skin. Hair falling in clumps. Had vertigo, tinnitus, angioedemas, dysbiosis, super painful periods, inflamed cervix, persistent viral infection, deficiencies. All in the last 2years. SIBO was there already and I just didn’t know, and now just got way worse. I never thought this could happen to me. Antibiotics came with a very high price to pay long term - for me. I just wanted a worry free (health wise) thirties, but here I am, dealing with the damage they left.

PERIOD PAINS: One "interesting" thing happened also that same month I did the gut test - but I also wasn’t surprised. My Adeno /period pains came back with a vengeance. One single week of deviation from my usually clean diet managed to set my IBS(SIBO-D!) off again for 3 weeks and as a result my reproductive health suffered. It’s all connected we all know that. So, months and months of work to improve my pains - I was already 60% better just with diet alone, although it took me almost a year of clean diet to get there and start noticing consistent results - and one single week was enough to send me back to square zero. Thankfully it was just that one cycle and the next one I managed to keep my gut in “shape”, my diet clean (always with a lot of daily work on my part), and so my period pains reduced again significantly the next cycle I had. Of note, I also had another Vertigo/Tinnitus attack that only lasted 1 day thankfully, this same cycle. Coincidence? I don't think so.

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

#uti #recurrent uti #chronic uti #bladderfulguration #bladder problems #bladder infection #interstitial cystitis #hpv infection #adenomyosis

[theutiarchives]

Jan-July 2023

It’s been a while since I posted and a lot has happened since. To be honest for the most part (feb-jun) of this year was awful and I wouldn’t wish this on anyone. I don’t even know where to start and this would be a huge post if I wrote down everything that happened and all the details, so I’ll just summarize:

• I tested negative finally for high risk HPV, I still had one strain positive from last year and it finally cleared. I definitely think the investment on some supplements (and diet) was worth it. I wasn’t going anywhere before with the traditional approach of “waiting and watching” and things were getting worse. Since I started my protocol things definitely improved and “fast”. The not so good part is that the deep pelvic pain I started to feel as soon as I became intimate with my partner is still here, and I now believe he passed me something that ultimately became a permanent problem although HPV is dormant. And no, I don’t have any visible problem and all tests are negative and I did pelvic therapy that didn’t help. From symptoms, it fits endometriosis (I have Adenomyosis confirmed) but I’m not doing a laparoscopy anytime soon.

• Treatment for SIBO with herbals gave me diarrhea with weight loss although my stools turned temporarily brown with Berberine and neem. I was already underwheight and had to stop. Rifaximin after, didn’t give me diarrhea but didn’t solve the yellow stools and by the end of the treatment also triggered my gut (although no diarrhea) with further weight loss. I hit my all time low after this. Very underwheight, even my period became irregular. Zero energy, and a bunch of stomach pains immediately after..

• I developed gastritis and intestinal pains and tested positive for H.Pylori. Natural treatment didn’t work and my functional doctor eventually had to put me on a PPI and do the conventional antibiotic therapy that by the way is extremely aggressive. I developed severe gastritis, housebound, in a lot of pains 24/7 and sleep deprived. For months I couldn’t work. I was a wounded animal sitting in a couch all day. Tbh it’s psychologically hard to describe these months so I’ll just leave it at this.

• After Pylera (antibiotics) my gut was even worse, as expected, but it worked for Pylori. My diet is now extremely limited to what my stomach can cope, and I’m eating only very bland foods well cooked and non-acidic until the stomach walls fully recover which can take many months to a year. I believe that by the time I did Pylera I developed ulcers, such were the pains. I have to eat still very frequently, every 2h or so and I’m finally getting better. It took me a month after the therapy to get off PPIs and I’d be much more comfortable if I were still on them but the side effects are no joke and for SIBO is definitely not good, my gut hates the PPIs so I got off of them as soon as I could. I endured the acid rebound pains although I tappered slowly. I’m now able to work and go outside as long as I take all the food I need with me at all times and keep eating frequently. Im not kissing or sharing anything with my partner (saliva wise) for the next foreseeable months. A lot could be said about this, and how unnecessary this is but I have my reasons regardless of what any doctor says.

• Gut: As for the yellow and loose stools those still continue and are overall worse than before especially the yellow part. Bile issues have been discarded a long time ago and if Berberine and Neem temporarily worked, means it’s a bacterial problem. Although I’m sensitive to fats - but also a lot of other things - so, a conundrum. All carbohydrates even low FODMAP ones give me yellow stools. I don’t have any Candida though and have done antifungals. I’m a puzzle. I wasn’t sensitive to gluten at all although I’ve been gluten free for over a year - yet recently with the gastritis I tried white bread and the intestinal pains it triggered were insane. I also have pains in my cecum and ascending colon every time the stools are firm, which means somehow they put pressure in that area when passing. I don’t think I have a ileocecal valve dysfunction but my functional doc at this point doesn’t know what else to do with me. I’ll be pursuing other avenues if I can in the future. The majority of supporting supplements either do nothing or make me worse, and my stomach can’t handle them now (gastritis). I’ve seen another gastroenterologist - supposedly one of the bests in the country - and the gaslighting and mistreatment was such I couldn’t believe what I was hearing. I went to a psychiatrist, forced by this doc that told my family this is all in my head. Ignoring the positive test for pylori and my gastritis pains! And ofc the psychiatrist didn’t find anything wrong with me, just said if there was something that couldpotentially help would be amytriptiline. I was on it for a while but because it solved basically nothing at all the psychiatrist told them there’s nothing mentally wrong with me.

• These past few months I had significant discussions with family and even partner. If I wasn’t struggling mentally before, there were many times where I felt I was starting to break apart. The sleep deprivation (from pains), the inability to work or leave the house, coupled with lack of moral support, hurt me, and there are things I heard I don’t think I’ll be able to forget. Including from my partner, that was always supportive but at some point he wasn’t, and some things he said (for me) were a red flag.

Everything is better lately though. And if there is one positive thing is that for the first time in 2years I managed to gain 2kg after pylori treatment and with the gastiris diet. I had lost 10Kg. Still have a long way to go, I have nutritional deficiencies and I don’t even want to test my ferritin at this point.

• There are many layers to all of this, a lot of details I skipped. If anyone has doubts I’ll answer any questions. I still can’t get over how Cefuroxime for the bladder managed to turn my stools yellow and triggered everything I’m going through now. Oh, as for bladder I had one post coital infection (e.coli) after the Pylera therapy because I couldn’t keep up with the proper dmannose dosage on empty stomach- I managed to treat it under 2 weeks on high dosages of Dmannose at the expense of stomach pains (empty stomach hurts like hell for gastritis, but it’s the only way dmannose works properly for me). But all of this confirms what I initially felt: I am still dependent on dmannose for post coital infection prevention. Although it works now and before fulguration it wasn’t enough. What I don’t have anymore is those random and frequent flares (in my case, full blown UTIs) all the time.

As if all of this wasn’t enough, my mother underwent major surgery to remove half her pancreas and spleen, due to pre cancerous cells. She’s still in hospital, and now I’m having to take care of my parents house, my father, and still take care of me and cook and eat every 2h and pause when my stomach starts hurting.

I have no idea when I’ll post again, but I will at some point when I have new and significant progress.

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

#uti #bladderfulguration #gutissues #ibs #sibo #h. pylori #gastritis #antibiotics #health journey

[theutiarchives]

13. NINE MONTHS

❦ I have reached the 9th month mark and my bladder is ok. I’m back to taking about 60% of the supplements and herbs I was consuming prior and after fulguration (although I switched some) after ~ 3 weeks break. I still take them, and will for a long time, as I don’t trust this to be over until 1 year after my last infection, which means Christmas. Some of them are antibacterial but also anti viral, and since I am fighting high risk HPV, all the better. I owe myself this effort so I can feel like I’ve done *everything* I could, if I eventually do have an infection in the future /next months. Which honestly I really hope I don’t. 11 years is enough. If intercourse or anything remotely related to that subject triggers you (and I understand as I’ve been there), please skip the next slide/paragraph.

In terms of post coital care, besides my daily herbs (in all their shapes and forms) and supplements, I rely on powdered dmannose (a lot of it, for 48h) and so far I actually think that for a couple of times, at least, if it weren’t for it, I would have had an infection. I felt a slight pressure and irritation when peeing a few hours after, and for a few hours. You know when you’re simply walking and the bottom part of the bladder almost tickles? Or makes you want to go pee even though you just did? And the general awareness feel. And then it goes away, insisting with the dmannose. So I think now it’s actually doing something for me (one of my bugs is e.coli). Unfortunately my cervix still hurts if pushed - and this will only stop once I beat HPV/the chronic cervicitis starts to calm down. So, it’s been a mixed feeling, as if I’m now able to have intercourse “freely” like a normal person (I still don’t have words for this) but at the same time now it’s a painful experience if I’m not super careful, keep it short and especially, slow, not that frequent and no deep penetration. Sorry if TMI, but this is the real side of these things.

On the bladder front I’m clearly working on prevention now, but I’m slowing shifting some of the things I’m taking towards anti viral action due to 3 high risk HPV strains and cervical lesions. And if this brings any sort of comfort to anyone (and being sarcastic): if I wanted to rely on conventional therapies for this, I wouldn’t get any support - I got as many answers for HPV /chronic cervicitis as I had for my bladder for 11 years. Worse actually, as for HPV there are no prescription pills even. “Because there’s no cure”. They prefer to wait and then cut a piece of your cervix out if your body doesn’t clear the lesions all by itself and they progress.. (and still this guarantees nothing). But there is always support! So, it’s not just urologists, for sure.

As for gut it’s still an ongoing project but better. When I went on vacations I did my best to keep eating the right stuff for me - with a couple of exceptions. I’m no monk. But it didn’t matter, just after 24h out of my kitchen, my gut got rebellious. Took me 1,5 months to get it back to shape (and I was only abroad for a week). Things are sensitive after 11 years of antibiotics. And as I’ve always said here, probiotics are far from the holy grail answer to healing the digestive system (plus, I don’t tolerate them, just the spore based ones). I will be doing a full gut test analysis just to rule out a few issues and as for the rest I’m doing what I did with my bladder: tons of specific herbs, a ton of bitters, plant extracts too, etc etc - and of course the right food for me. That’s the very basic foundation actually. Sometimes my gut flares horribly with the most ridiculous thing like white beans but not brown or black, so who knows what happens there. I’ll be patient and I have to recognize it will take a lot to go over issues induced 11 years of antibiotics including too many cephalosporins in the past. No more gut bleeding for many months now, which is amazing.

Trying to keep this sort of short (although it’s not). I’ll write the next update probably when I hit one year post op. A huge hug to everyone who struggles. Recurrent or chronic.

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

#recurrent uti #UTI #bladder problems #bladderfulguration #interstitial cystitis #chronicuti

[theutiarchives]

08. TWO MONTHS

❦

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 🌿

#uti #recurrentuti #chronicuti #uti symptoms #interstitial cystitis #bladderfulguration #fulguration #embeddeduti

[theutiarchives]

12. SIX MONTHS

❦ I took a break from this page, as I was needing to regroup and focus on other issues as well on work, as these last few months have been incredibly busy and demanding.

I’ll try to keep things “on schedule” and copy paste my writings when I was getting to the 6month mark, although technically as I’m publishing this I’m fast approaching the 7th month. Head to the very end of the post for a quick bladder update only.

“It’s always tempting to write quick short posts, as they’re everyone’s favorite to read (for me too) but with any health issue that’s been going on for over a decade and especially when treatments left consequences it’s extremely hard to get them addressed at once and do a true “victory” post in just a couple of months. If only it was that easy! It’s like pealing an onion, but only backwards in this case: building layers of what went missing.

Over a decade of frequent antibiotics, infections, and very probably what I’m now finding out, a possible genetic deficiency, that can very well be one big culprit implicated in my rUTIs, culminated with:

• Wrecked gut health - addressing it; FMT if all fails/to complement. Have to win the lottery first, though. (Kidding but not kidding). Gut healing is extremely complex and throwing probiotics isn’t a cure. Also, I (still) can’t tolerate them. More on that for future posts.

• Absolute iron deficiency - only being able to tackle it now as in the past feeding bacteria with iron would make me have either a fungal or a bacterial bladder infection really fast. Even this isn’t being a linear path, and there are ups and downs.

• High risk HPV and chronic cervicitis - I have 3 high risk HPV bugs, history of cervical cancer (resulted in death) in direct family, with LSIL/CIN1 lesions. Chronic Cervicitis meaning my cervix is permantly inflamed causing dyspareunia (something I’ve never dealt with all my life).

• Painful period cramps and mastalgia - suspected endo/ possible hormone unbalance: addressing it and I’m 40-50% better; again, not linear, not fast, and definitly not new (it's been a while I've been doing the natural route on this topic, as the pill is off limits for me and never did anything but supress symptoms).

• Tinnitus, for a year, and total lack of earwax which culminated this year with a 3week crisis of Vertigo/BPPV, left me housebound for 2weeks. Tinnitus still ongoing but better; the rest: addressed.

• An altered immune marker /potential genetic deficiency, and not a "consequence", but still to be further investigated.

So, fun. But what I’ve found, with time, as I’m addressing all these things - some of them for a good while now - is that shamming, especially online, is real. And the worst part is that we tend to either acept it or give ourselves some pretty harsh self-criticism!.. Everyone believes a certain treatment for something is the best way and the next thing isn’t worth it. If there’s something I’ve learned in over a decade is that the best way is to incorporate knowledge from everywhere. It’s far too easy for some to look at this and say “hey you just need to control stress, eat very healthy and all the anti inflammatory foods and do a liver detox and take (insert whatever natural protocol) and your body will reborn like a Phoenix from the western medicine ashes”. Let me tell you it doesn’t work this easily for everyone. However, at the same time, they’re absolutely right, as all these things have to be done in order to rebalance/fight whatever it’s going on - no doubt. But it’s just not that fast, not that easy, not linear and it takes a lot of mental and routine commitments - AND - there isn’t “one way fits all”. As a Mediterranean diet follower if something I’ve done all my life was eating quite well. In fact, maybe that’s what kept me going despite multiple infections and problems for so long. I love nature, herbals, studying botanicals, incorporating them; I’ve tackled stress in a different way and did several lifestyle changes, and yes !! I’ve seen results. But I’m not born from the ashes still, for sure. No one knows everything. We all have these friends who can have sex all the time and eat horribly and don’t even know what’s like to feel sick or when was the last time they even went to the doctor. So the “why me, what have I done wrong” is a guilt response, one that doesn’t help us process things in a healthy way, and sometimes, the true answer is: nothing. Replacing these thoughts with: “there is always room for improvement and I’ll be working on several levels to try to bring my body back to balance/fight ___ with a stronger foundation” is much more helpful. It’s an up and down journey, for sure. :)

Having that said, how’s my bladder? Fine! I haven’t had an infection in 4 months, and no antibiotics, which is amazing, although pretty much avoiding a real trigger: sex. So, still no victory laps / fulguration "definite outcome" for me. From now on I’ll be resuming ‘sexy activities’ after a 9 month break (!..) but I’m feeling petrified still - my hands start sweating and I have these internal panic attacks just thinking about it. Ill do it only when I feel comfortable and ready and I’ll start really slow and gentle and just take PACs and Dmannose after and see how it goes.”

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

#recurrent uti #uti #bladder problems #bladderfulguration #interstitial cystitis #chronic uti

[theutiarchives]

11. FIVE MONTHS

❦ So it’s been 5 months now. My bladder has been behaving, apart from a couple of days I had shedding and lingering irritation/urgency after a trip where I wasn’t able to drink my usual amount of water. However I’ve been dealing with side issues that I have been sharing here and there in Ig stories*, and I’m not feeling well looking at screens/writing as for now. I hope I can make a decent update with more info in 30 days. * last year after a horrible skin reaction due to abx I was forced to take prednisone. More infections came (as expected) and even more antibiotics. Developed tinnitus which became permanent and as time went by pressure inside my ears increased. Now it escalated to Vertigo / meniere's. Currently I can’t stand straight, have severe nausea and dizziness but am already under medication. But it’s hard to focus on screens or even look down at the phone, I want to puke. I was also diagnosed with high risk HPV this month. So it’s a bit too much for me right now, although I’m taking care of it too. Thank you for your support , no need for anyone to worry, I’ll get better.

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

#recurrent uti #chronic uti #uti #interstitial cystitis #bladder problems #bladderfulguration

[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 🌿

#uti #recurrentuti #chronicuti #uti symptoms #interstitial cystitis #bladderfulguration #fulguration #embeddeduti

[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 🌿

#uti #recurrentuti #chronicuti #uti symptoms #interstitial cystitis #bladderfulguration #fulguration #embeddeduti

[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 🌿

#uti #recurrentuti #chronicuti #uti symptoms #interstitial cystitis #bladderfulguration #fulguration #embeddeduti

[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 🌿

#uti #recurrentuti #chronicuti #uti symptoms #interstitial cystitis #bladderfulguration #fulguration #embeddeduti

[theutiarchives]

04. FINAL COUNTDOWN

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Oof. Busy brain this monday...! And I'm letting it flow. Guess it's part of the process... Today it hit me: In 5 days I'll be boarding into a plane and flying for hours to get to a hospital abroad. "- Wow, this is happening. I have to pack." It's been a wild time lately. I haven't been thinking about the procedure. For the last few months, and even more lately, I have been focused just on recovering my gut and overall health as much as possible (post fulguration antibiotics will already do enough mess). Not forgetting my bladder of course, and also keeping yeast at bay. I learned quite a lot, and now I am much more aware of what my body is telling me. I can now sense I won't be 100% Ok in 24h, if I so much crave a dessert. Amazingly, or not, it's my gut not 100% balanced. And I am able to reverse that now, and continue ok. But today I woke up to a rainy, foggy day, and while drinking my morning (bladder) tea, unconsciously, just started to have several life flashbacks. Moments where my bladder made my life slowly shift; How my relationships changed; Remembered exes'; A doctors genuine ´pity face´, when tears just silently started to fall down my quiet face in an exam room, the petrol station on fire I was feeling inside me, about to crack open; How I had resigned to be single for the rest of my life when I was 33y and the psychological toll that took on me; Listening to friends talking about their flirts and adventures on a friday night with a glass of wine, and I'd have to keep smiling, but feeling devastated inside, holding my alkaline water bottle, knowing years were going by and my bladder didn't let me live any of that in peace, or at all; How male coworkers found strange that I was always alone and had to comment... So many times I just wanted to scream "I can't have sex - ta-da! - now, how many of you would keep up with that? Any men here looking for a nun? Hm? Because that's all I have to give now, either celibacy or let "you" slowly kill me in the process - been there, thank you but no thank you". No one "normal" has to choose between intercourse or health. But if I had repeated UTIs from 25y onwards, several years into them, and with nothing working to avoid them, my body slowly forced me to choose just one. My bladder changed my life. It made me loose amazing opportunities that aren't coming back, throughout almost all of my best young years. But it made me shift my perspective on life, appreciate it even more, how beautiful it is even when you're not living how you thought you'd be. Corny? Truth! It has been a teacher of sorts. I built an internal resilience that is now precious for many other things. I got tougher, and I don't complain easily now. I became even more optimistic as a person in the face of "defeats" - funny isn't it? I don't give up (as) easily. The problem isn't solved. I don't tolerate post coital antibiotics; Dmannose and so many other things also don't avoid post-coital infections (post 03). Although I currently have a partner, dealing with this it's very tough - on me, and him. As anyone can imagine. I also have to avoid stress, so that I don't have non-stop UTIs, and being in a stressful profession... it's a puzzle, one I have learned to master, with time. It's been a hell of a ride, this last decade. And several past moments have resurfaced today, as if my subconscious is trying to re-arrange and pack the story so far, and accept and process the next step in this already long journey. I'm not expecting miracles, but I'm not giving up and will continue to relentlessly support my body in all the ways I can, before and post procedure. (as an European non-English native please feel free to correct me) Take care 🌿

#uti symptoms #uti #recurrent uti #recurrentuti #bladder infection #fulguration #bladder problems #chronic uti #interstitial cystitis #trigonitis #bladderfulguration

[theutiarchives]

03. WHY FULGURATION

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I'm a bit hesitant in writing about this as it can be a controversial topic for some. I do not discourage nor endorse any treatment - how could I, I'm not a specialist - but I do think there definitly isn't one-approach fits all.

This is a long and over 10y+ process, so as you can imagine, no one jumps to this mindlessly. But if I had to say the number one reason why I chose fulguration at this point is: because I no longer tolerate a single antibiotic (literally). Period. Not prophylactically, and not after an infection, where I do have to take them, and even less long-term continuous therapy. Secondly, also haven’t been successful with other approaches, for these past few years, which I’ll might talk about one day.

(On Antibiotics) — The adverse effects of antibiotics are now such, that it takes me almost 2 months to get back to decent (not high!) levels of energy and focus to work, and to go to a toilet in relative peace. I will emphasize, though, that this was one of the pivotal moments for me: when I developed IBS symptoms and later started bleeding from my gut. When you look at your toilet and see blood like you're on your period, but it's coming from your insides, after taking so many antibiotics, you are forced to look to what are you doing to your body, because it's screaming back at you. And this wasn't the only side effect and I was eventually 'forbidden' by the gastroenterologist to take them - please read "02.My history".

(On probiotics) — And then "you must take probiotics". And I did. Result? I developed other digestive problems on top of IBS problems that fired through the roof. The fun part? Random probiotic mixes will make my bladder start to shed and end up in an acute UTI in no time. Yes, (most) probiotics now trigger me an acute UTI. Because my gut flora is now extremely poor, I have to cherry pick those I can take - and it's an almost impossible task. We all have very different bodies and reactions - and, possibly, "cures".

(Other intolerances) — I also don't tolerate: anything acidic, from oranges to wine; Buffered Vit C; B6; Iron; Other minerals in supplements. Acidic stuff will make me shed and lead to a UTI, just like probiotics; Iron and other Minerals give me a fungal infection in my bladder. I’m on the alkaline “team”. Also, I wasn't always like this, this started to happen after years and years of infections.

(On Alternative solutions) — On this topic, I did try and still do try lots of other things - but I'll leave that for another post (maybe, because it's exhausting). I will say, though, that it's been a while since I started to incorporate loads of things to avoid UTIs after sex, and none worked so far. None. Not to say there isn't more to try - because there is.

We are infinitely complex in our own bodies, with an extremely complex condition in it of itself - one that hasn't been taken seriously for decades, and it is on the rise, alongside with antibiotic resistance. We are all different, and so react differently, to everything, really.

I've had this for 10+ years so this is my choice, and hopefully you'll understand that this comes after many, many years trying several things and researching solutions, countless exams, doctors, and alternative treatments, with an inability to cope now with more antibiotics. My sex life was stolen from me and I can't have intercourse at this point. And I've already been "at this point" several times, my “best years” are mostly gone and unlived because of this. And I currently have a partner. There are several layers of impact this has on one's life. I will finally add that I'm not hoping for a miracle with fulguration, rather a possibly important step amongst others I'll do my best to take. I respect other peoples choices and I deeply empathize with this problem, I hope everyone finds their own way out of this miserable condition, chronic 24/7 pain, etc; information is power so keep sharing your best findings with everyone, including me, I'll only show gratitude! (as an European non-English native please feel free to correct me) Take care 🌿

#uti symptoms #uti #recurrent uti #recurrentuti #bladder infection #fulguration #bladder problems #chronic uti #interstitial cystitis #trigonitis #bladderfulguration