i'm losing my mind. please help

Hi there,

I am so glad that you have reached out. I'm 24 now. To be honest with you, this whole experience has been incredibly lonely for me. I haven't met anyone who has gone through anything remotely similar and the family and friends that I talk to about my condition just don't 'get it', no matter how sympathetic they are.

Both your theories are interesting and I actually share them. I think either this is caused by the culture showing a false negative when really there are remnants of bacteria remaining inside OR this is purely bladder inflammation. I think the overuse of antibiotics in such a short period of time messed up with our system. That, combined with a really horrible UTI. My urologist, on the first visit, told me that I must have had a bad UTI that caused my bladder inflammation. He was not worried at all and said that my symptoms (mainly urgency) would go away in a short period of time. I'm assuming someone from the medical profession isn't going to blame antibiotic use as the cause of the inflammation, but I still believe it may come down to that.

I spoke to my friend's brother, who is a doctor, and he said that if was caused by the UTI and/or antibiotics, it is a good thing, b/c the damage is reversible and it is not due to an intrinsic problem.

Today, I feel a lot better than I do yesterday. I would rate my feelings of discomfort/urgency today as a 1/10. Maybe it is just time that has passed that has caused this, but I began drinking marshmallow root and leave tea and bought the marshmallow root tincture to add into my water. It might be helping (I read online it would). I also bought Serrapeptase and am taking turmeric shots as they are anti-inflammatory. I recommend you look into these products as well. If our problem is inflammation then we have to be taking stuff that are anti-inflammatory.

I think it is an incredibly good idea to see a urologist. They know best in this type of situation. I also asked my primary doctor to give me a referral to another urologist too to get a second opinion. In this type of situation you want to be 100% certain. 

I am also thinking of maybe sending my urine off to a lab that does a more thorough examination of the urine and actually leaves it for a few days to see what collects to definitively rule out the possibility that this is just a UTI.

The reason I don't think it is a UTI (aside from the negative cultures that came back) is b/c the last doses of antibiotics they gave me did absolutely nothing. In the past, when I would get a UTI, I would feel relief about 2 pills. I think what I have is closer to IC, but I'm hoping it isn't IC b/c it seems like a life-long issue.

I wish you the best of luck and we should definitely stay updated on each other's journeys.

Sorry for the double reply but I’m doing some more research on biofilm and I’m starting to believe this is what’s going on. I’m scared though. How does one get rid of bacteria hiding in biofilm?

Hello Bianca, 

No worries! We are here to talk and hopefully comfort each other and share our experiences. Any information we can share I feel could potentially help us out. I will answer your recent question as I feel like it's more urgent. I did some reading on biofilm too and as much as I hope it's not what I have I feel like it is likely the cause of my "flare ups."

I don't think there is that much information surrounding biofilms when it comes to UTIs unfortunately... I read that it is more recently that it is getting attention.

So the thing with biofilm is that it is basically dormant, so you can think of it as a community of bacteria that have attached to your bladder wall and plan to stay there so they create a shelter, or coating, to protect their community as they continue to multiply. Once in a while some will get released into the bladder wall and that is when you will experience UTI symptoms. This would be known as the "flare ups."

They may show up on a urinalysis/culture and we would then get treated for it. But antibiotics cannot attack the bacteria that is in the biofilm... so we THINK we are better for a few weeks and then the cycle begins again. According to some articles I've read, this is the reason that people experience recurrent UTIs. It also stated that many people who were slapped with the diagnosis of Interstitial Cystitis may actually have biofilms in their bladder, and that would explain their never ending cycle of frequent urination, urgency, and burning.

Again, this is my theory: We were given antibiotics that the bacteria resisted, and maybe that gave them a chance to attach to our bladder walls.

Unfortunately from what I have read, consistent monitoring of your UTI symptoms by your doctor through tests seem to be one out of the very few ways to really know if there a biofilm is the cause of your recurrent UTI or episodic UTIs. There are ways to test for the presence of bacterial community but only a few people at this point in time can administer the tests. 

If you would like the resources that I got this information from, shoot me a message! (Just because I am not sure if we are allowed to post links in this forum).

I know this information isn't what you would have wanted to hear because it's definitely not what I wanted to hear either... but I hope that it gives you a better understanding of biofilm and does not make you feel as helpless/hopeless. Something we can do as we see doctors and specialists is educate ourselves more on what were experiencing so we can bring it up to our doctors! I am definitely going to be bringing up the topic of biofilms at my next appointment. Please keep me updated and don't hesitate to ask any questions or share any information you are comfortable with.

I'm really scared to be honest. I think my problem is biofilms. The doctor I saw today at the hospital had no idea what biofilms are. I don't think there is a lot of knowledge on biofilms in the medical community. How can we treat them? I don't want bacteria living inside of me dormant, just multiplying like crazy. Today my urine showed a little bit of bacteria and some red blood cells; they are running a culture now, I'll get the results in a few days.

He also prescribed me a strong anti-inflammatory, which hasn't worked to reduce my urgency so idk if my issue is interstitial cystitis. I don't think its inflammation. I really believe the bacteria from the UTI formed biofilms.

I don't know what to do. I feel so much anxiety about this. I found out that there is something called a biofilm disruptor, I'm hoping to buy some. 

Bianca,

I'm sorry! I didn't mean to scare you with this information. But just wanted to let you know that this could be a possibility as it is a real thing. I do not think there is much information on biofilms in the medical community either. Hopefully it will be brought to light and more research will be done on it. I do not think UTI's in general get enough attention. Millions of people in the U.S. are seen and treated for UTI's every year and many people experience chronic, or recurrent UTI's. Testing methods for UTI's are found to not be that effective either... all around I just think UTI's need to be researched more!

It is a scary thought thinking bacteria could be inside of us multiplying... I wish I had an answer to how it could be treated. I have been looking for that myself. I think maybe low doses of antibiotics for months is one of the ways that could kill bacteria as it gets released into the track... maybe this could eventually weaken the community of bacteria in our bladder? Unfortunately I haven't come across anything when it came to treating biofilms.

I hope that the culture would show something so you can get treated! I am going to ask if I can get a culture at my next appointment too. I am also going to go request my urinalysis and culture results in person. What qualifies as a UTI for most doctors would be >10,000 CFU per mL... which shows them there is bacteria in the urine. Then >100,000 would be a significant amount of bacteria. So results that conclude with <10,000 CPU per mL are not even reported as being a UTI... when it could very well be a UTI because there is still bacteria in the urinary tract (bladder, kidneys, etc.) I'm just wanting to know if my results are <10,000 but still up there (like 6,000 or 7,000). It would lead me to believe it is a low count infection.

I have anxiety about all of this too... I can't remember what it feels like to have to pee on a normal schedule with a normal feeling. I try to stay calm as I believe that stressing will definitely irritate the symptoms! I have not heard of the biofilm disruptor though, I will definitely read into it. I have been drinking more water and Chamomile tea in the meantime until my appointment. Let me know what you hear from the doctor about your culture! I hope everything is ok. 

Hey,

I’m so glad you mentioned the biofilm thing so please don’t be sorry. I really believe that is what it is. I know it sucks that they don’t tell us whether there’s a smaller amount of bacteria being grown in our culture. I wonder if we can still request finding out about it. It seems silly we can’t even know the thorough details about our health.

This waiting game to see our doctors really sucks. It’s crazy how the hospital I was at yesterday told me they won’t do anything and I have to wait to see my urologist even though the GP knew I’m suffering in pain every day. He didn’t even know my next appointment is this Wednesday. For all he knew it might take another month. 

I’m going to purchase a Biofilm disruptor today from online. I’ve been reading the amazon reviews and people have been saying it worked for their recurrent Uti. 

Good luck with everything!

Bianca,

I felt really bad seeing how worried you were after I told you about biofilms. It definitely is a scary thing. If you don't mind me asking, what was the strain of bacteria in your urine when you initially got your UTI two months ago? I know that E.Coli is the bacteria most responsible for UTIs but there are a few other types that do as well.

The waiting game is definitely frustrating! Especially because doctors might think you're making things up, or don't want to try a test, or straight up probably don't know much about the condition. Why have us keep seeing you if you can't help us? I have still yet to be referred to urology after visiting the ER twice, and the doctors office 3+ times. That's not even including the lab visits and ultrasound. The person who called me back to read my UTI results seemed to not even know what she was reading back to me. It's beyond frustrating...

I looked up the biofilm disruptor and it does have good reviews! Particularly the Klaire Labs one. Is that the one you are looking at? I read up on Marshmallow Root after you mentioned it and that had really good reviews as well so I did order it and it should be coming tomorrow. Going to try and incorporate it into some tea. 

?Good luck to you too! I really, really hope we can stop dealing with this soon.

I live in Canada, not sure where you live, but the doctors and urologists here are not great. If I don’t get the help I need here in about a month, I’m going to make a trip to the U.S. I’ve been to the hospital twice and they failed to do anything but refer me to a urologist (outside the hospital) even though they have a urologist on call they could have provided me, they told me they only call them when the matter is serious. Apparently my months long suffering, sleepless nights, and anxiety over this condition does not count as serious. Another urologist I was referred to which was close to my home rejected me as the urologist only deals with cancer patients. It is honestly ridiculous. And the urologist I am seeing on Wednesday I am not too hopeful about because the last time I saw him he brushed off my symptoms without physically examining me and saying it was bladder inflammation. Idk if he even knows what ‘biofilm’ means. The doctors at the hospital definitely did not and just assumed because they didn’t know it that it doesn’t exist.

I had an E. coli infection. I know exactly why it became really bad. The doctor who treated me prescribed macrobid. A very weak antibiotic that only stops the bacteria from reproducing and doesn’t kill them. It relies on your immune system to do the job. Now I think during that period the bacteria found the perfect time to create Biofilms. 

If I could go back in time I would’ve taken a stronger antibiotic right away. I wish everyday I could go back in time so I wouldn’t have to be suffering the way I am.

The biofilm disruptor you mentioned is a really good one. I ordered another one I found good reviews for called Kirkman Biofilm Defense. I’m going away on June 12 for a couple weeks so hopefully it gets in on time. Now my only issue is figuring out which antibiotic to take in conjunction with it to kill the bacteria off once the biofilm.

If you think your issue is biofilm I think you should get one of the disruptors. The reviews seem very promising.

Bianca,

I live in the United States, and I would say it probably isn't any different here the treatment you would get unless you were able to find a good urologist. But of course it is worth a try too if you are not satisfied with the treatment you are receiving in Canada. I feel like my matter isn't taken seriously at all either. They had me fill out a 3 page packet regarding my symptoms with my urinary tract, one which even asked if I had recurrent infections to which I answered yes. They just read all the answers back to me and nodded and that was it. I'm not too hopeful about my appointment next week either... I remember the doctor saying something like if I still have frequent urination then he is going to make me try pelvic floor exercises. He is completely ignoring the fact that these symptoms are lingering after a UTI! I am going to be more pushy... and if they are not willing to listen to what I have to say I am going to switch providers as well. This year has been terrible dealing with all of this!

I have a memory that I was told in the ER it was E. Coli, yet when I returned for a follow up my doctor said Enterobacter. But I was prescribed Macrobid too! I should have spoken up at the ER because I knew myself that probably wouldn't have killed the infection. I always took Cipro, and even with its potentially dangerous side effects, it ALWAYS cleared my infection. I have had a UTI 6 or 7 times in the last 3 years and it always went away by day 3. Trust me, I spend all my days regretting not saying anything that day in ER when he said he was sending me home with Macrobid. I feel like had I taken anything else, I would not be dealing with this!

I read about the Kirkman Biofilm Defense as well! It seems to even weaken current biofilms. If this works, that would be amazing. I am sure your item will arrive in time! I think I am going to have to try this biofilm defense thing as well. The reviews were promising. Are you currently taking any antibiotics? I haven't taken any since my last about two and a half months ago. I want my doctor to allow me to regularly take U/A tests along with cultures in hopes that one will eventually show something, and that this time I can take something that will get rid of it for good... or at least set the path for a sterile bladder.

Hey,

It really sucks how doctors don't take UTIs as seriously as they should. I feel like they do underplay the connection our previous UTIs have on our current symptoms. I don't think I would be experiencing the symptoms I am experiencing now had I not had a UTI a couple months ago. And like you said, I wish I was never ever prescribed Macrobid. It did not help at all. 

Biofilm Defense in spite of its name (makes it sound like its more like a defence for future biofilms) I believe is meant to destroy the biofilms present in your body. I really hope it works. Fingers crossed.

I'm also seeing my urologist tomorrow. I think he is going to perform a cystoscopy on me. I will update you on how that goes and what he says. Hopefully the info might help you as well.

I'm not taking any antibiotics at the moment as my culture came back negative. I don't want to take antibiotics until I know for sure I need them. I think once I start taking the Biofilm I'm going to grab some antibiotics. Not Cipro however. Cipro has really, really bad side effects. 

All the best,

Bianca

Hello,

They definitely do underplay the symptoms! I wonder why they won't even consider the fact that all of this is connected to the UTI we had months ago. Today has been particularly bad for me... and its only noon. I am not experiencing pain or anything but the frequent urination has led me to 5 trips in the past 3 and a half hours. Good thing I have started my bladder diary today... I have my appointment on Monday.

I hope the Biofilm Defense will work as well! 

I actually thought in my head this morning "I remember Bianca said she had her appointment today!" haha So, I hope that goes well and that your doctor will try and help you out a little more. I would like to get a cystoscopy myself but am scared of the pain... but if it could potentially help solve these issues I will just have to deal with it.

Just make sure you don't take any antibiotics unless you are prescribed to them! As annoying as it is having all of these symptoms but nothing coming up on the tests, taking antibiotics when they are not needed will only contribute to resistance! So in the future if you get another UTI, (which, I'm sure you will because with each UTI your chances to get another get higher and higher, and unfortunately I am proof of that) the antiobiotics you took when they were not necessarily needed have gotten a chance to adapt and now are resistant. I am SO tempted to ask the doctor to just give me another antibiotic to try, but because my tests have all come back negative also, I'm not going to. I am going to just keep insisting that I have regular U/A and culture tests and maybe something will eventually come up. 

I hope your appointment went well and please let me know how it went! 

Hey, 

Your last response is being moderated; I'll reply to it as soon as it is revealed. But just to update you on my visit today, my urologist scheduled a cystoscopy for me at the hospital tomorrow. He said that I might have cystitis cystica. He has to examine me to know for sure. He also knew what biofilms are but he said the idea of them are not generally accepted in the medical community. He seemed a bit skeptical about it but yet at the same time willing to accept, if presented w/ solid evidence, that it does exist.

I'm still going to try the Biofilm defence and see what happens.

I'll let you know how the cystoscopy goes!

Best,

Bianca

Hey there,

I just had my cystoscopy done. I didn’t experience any pain. I would definitely get one done to rule out some diagnoses.

Mine came back fine. He said I have a healthy bladder. Which might mean I have interstitial cystitis. He prescribed me Mirabegron to take one a day. Let’s see if that works.

It might also be an issue with Biofilm. We shall see I guess.

- Bianca 

Hi Bianca, 

Glad to hear your test went well!  That sounds like a  different medication than I was given. Hope it works well for you and does what you need.  If the doctor said you have a healthy bladder,did he also say you might have IC, or why do you still think that? You may jut have had several bladder infections that  took a while to go away...

Hope you are feeling back to normal soon!

Cherie

Hi Cherie,

Thank you. He was checking my bladder to see if I have any cysts or blisters, which would show I have cystitis cystica. He said IC is a diagnosis of exclusion. They diagnose patients w/ IC when their cystoscopies show that they have healthy bladders but yet they still experience symptoms like urgency and frequency. 

I still think the bacteria exists in my body but is protected by biofilms. This makes the most sense to me. It would explain why there is blood in my urine too (not visible though).

All the best,

Bianca

Bianca,

I am happy to hear that they didn't find any abnormalities in the bladder! Hopefully the medicine that you were prescribed will help you with your symptoms. What kind are of symptoms are you experiencing by the way? I remember you said you had blood in your urine that is not visible. Are you experiencing frequency? My main symptom is frequency and it's super annoying. My appointment is Monday and I will definitely bring up the cystoscopy! Let me know how the Mirabegron is working for you :-)

Hi again,

M y main symptom is urgency. And even when that is gone, I feel like there is something there. I don’t know if that makes sense. I also have blood in my urine, which is not visible. 

I’ll let you know about the medication. Hopefully by tomorrow i’ll Be able to tell you if it works or not. It does help with frequency too however. 

If we both did get cystitis though, I believe it was caused by over usage of antibiotics in a short period of time. I think it is weird still to have cystitis at our age. My urologist also said it isn’t normal for a 24 year old to have these problems. This kind of makes me believe my issue is Biofilms.

My urologist also recommended a supplement called cysta-q that offers relief. You can order it from online. I read some very good reviews on it. I’m not going to purchase it however until I try this and the Biofilm Defense out. I’ve been spending way too much money recently buying supplements on supplements to treat this damn problem.

Hope all is well, 

Bianca

Bianca,

Finally I am able to see your message! haha

And actually, I understand your symptoms 100% because that is literally what I am experiencing. My main symptoms are urgency and frequency. After I go to the bathroom, it feels like something is still left there, and that feeling will remain as my bladder fills back up, but the entire time I feel like I have to go to the bathroom even though I just went. I try to ignore it because I know if I go its only going to be a little. Its such an annoying feeling.

How is that medicine working for you? I hope you're finally able to get some relief. I think it is weird to get cystitis, Overactive Bladder, or any urinary related condition at our age. We are still too young to be experiencing a weak bladder in my opinion. I understand a week or two after a UTI is treated, but months? 

I have been spending a lot on at home test kits and supplements as well... so hopefully our doctors can help us out. I am exhausted too, feeling like you have to pee all the time definitely takes a toll on you. 

Also, my appointment is today so I will be sure to let you know how that went!

Hey,

Glad to finally hear back from you. Okay so I don’t want to say anything too prematurely but I have more evidence to suggest my issue is not cystitis and my issue is Biofilms. I actually want to thank you for mentioning Biofilms to me because without you telling me that, I wouldn’t have investigated further.

The first few days I took the bladder medication he gave me, I didn’t find any relief. If I did, it was minor. It did nothing tbh. It maybe resolved my frequency and urgency but it didn’t get rid of that weird feeling always present down there that would distract me the whole day. Then I started taking Biofilm Defense. I take it on an empty stomach then an hour later have some water mixed with d mannose powder. Throughout the day I take Uva Ursi pills and some cranberry pills. The first day I didn’t feel any different. But yesterday and today (the second and third days) I finally feel normal again. Now, it’s still TOO SOON to tell for sure, but I think it might not be a coincidence that the day after I took Biofilm Defense my symptoms went away. 

Today I’m forgoing taking the bladder medicine to make sure that isn’t what made me feel better. The reason I don’t think it was is because it didn’t work the first three days on it. And it’s not like antibiotics that requires time to kick in I’m pretty sure. If my symptoms return tonight or tomorrow morning then i’ll Know it helps. We will have to wait and see.

I wish you all the best,

Bianca 

Bianca,

Sorry it took me a few days to respond to you!

So my appointment went exactly as I predicted. I was not even there for 10 minutes... I basically was told by the doctor that I have Overactive Bladder and she is going to make me to Pelvic Floor Therapy... so for now I am waiting for a letter from the location I am supposed to go to. I told her about my symptoms lingering after a pretty bad UTI and that didn't seem to phase her at all. 

I have been getting better but there are still days when I find myself going to the bathroom a lot. So I guess I will give this Pelvic Floor Therapy a shot and if it doesn't work I am basically going to call my Provider and demand that I get referred to Urology.

And you are very welcome! I know biofilms is such a scary thought... but if that information could help anyone who is suffering from recurrent UTIs... because it turns out for many people they actually do not have Interstitial Cystitis, they actually just have a biofilm in their bladder or embedded into their bladder wall cells. I am glad to hear that you are getting relief! Have your symptoms returned at all or did the supplements help? Maybe I will have to get that Biofilm Defense for myself as well!

I hope all is well!!

Hi doll,

Just wanted to check in on you. How are you feeling? Please update me.

Hello Bianca,

It is good to hear from you! I have been feeling a lot better these days, rather than feeling an urge to go right away I am able to now go every 1 1/2-2 hours, sometimes even 3. It depends on the day though... sometimes I find myself going very frequently but I am trying to watch what I eat and drink much more water. I also had my evaluation for pelvic floor therapy and I start officially next week so I hope that will help. Usually find myself going the most in the morning... 6am-12pm usually end up going about 3 or 4 times on the bad days. 

How have you been doing? I hope your condition has been improving!

Hey!

I’m glad to hear you’re feeling better! I’m feeling a lot better myself. I realized stress was a huge trigger for my bladder spasms as well as certain foods. I also take D Mannose everyday at least twice a day. So far I haven’t had any symptoms. A naturopath I consulted told me I probably don’t have IC and might have a pelvic muscle dysfunction problem, but I’m not 100% sure about that.

Keep me updated on your subsequent sessions.

- Bianca 

Hello,

I am glad to hear you are feeling better yourself! I would say now I experience the frequency once a week, and two times at its worst. I noticed that eating sugary, acidic foods takes affects on me the next day and thats when I experience frequency. I have been taking D Mannose twice a day as well!

I will definitely keep you updated! Glad we are finally getting some relief!

please can you send me tbe details of where to test for biofilms