#bladderfulguration

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.

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.

❦ 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.

❦ 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.”