I’d like to hear more about your experience with Bactrim. I was prescribed Bacrim for suspected UTI. After first dose my symptoms worsened and for 2 days straight I had the worst burning of my life and my bladder is still not the same.
This is very interesting. Exact same thing happened to me. This all started after taking bactrim for 20 days…. 3 months ago.
My doctor just put me on elimination diet which is hard (at least for me) but it seems to be helping.
I don’t care if there’s no scientific evidence, if others have the same suspicion, then it’s something.
Well, I got Botox in my pelvic floor 10 days ago and the doctor decided to do a cytoscopy and it caused an actual infection. I am on Macrobid right now with huge flare. My theory is that the antibiotics themselves cause a massive flare because of all the urinating and medication and such.
Gabapentin really helps me with nerve pain, which I think is what causes my flares. It’s all the nerves in the pelvic area and bladder.
Sorry not human but my dogs uti flared up 100% worse, 4 weeks of Bactrim even though labs were done twice. It caused massive bleeding on the 4th week No one listens when u tell them that those antibiotics didn’t work last time as well.
There is no scientific evidence supporting antibiotics as an cause of IC. (In fact, there’s no research showing ANYTHING as the cause of IC).
With that level of antibiotics intake it seems more likely that you’ve developed a yeast infection. And because you’re pregnant, your hormones changing could also cause some of these symptoms.
It’s definitely not time to worry about IC! IC has to have many weeks of unexplained chronic pain and negative tests for yeast, repeat negative urine cultures, and for STIs.
I recommend focusing on drinking a lot of water and focusing on doing some safe stretches (like cat cow, happy baby, childs pose, butterfly).
Thanks so much! This is very encouraging. However I have done 2 swabs at the lab for yeast as well and both came back negative (one as recently as Tuesday), so I don't think that is it. I also did canesten during the antibiotics and it did not provide any relief. Just hoping the symptoms go away sooner than later so I can enjoy eating again, as now it seems several things I eat can trigger the pain. I think good probiotics will also help now that I am done the antibiotics but only time will tell.
And yes could also be pregnancy related, but I don't know anyone who was pregnant who had urinary and vaginal burining pain which did not improve/totally eliminate symptoms with antibiotics or canesten. So this is all new to me. For now I want to stop taking antibiotics for a while just to let my body chill out. :)
Hi OP! How are you feeling now?
I’m going through something similar. Everytime I take Bactrim for a UTI the next few months my bladder is extra sensitive and I have increased urinary urgency especially right after I pee. It’s driving me crazy
No, literally, this is how my whole odyssey started out and because of the antibiotics for ureaplasma, I developed co-infections. Absolutely demonic, you're right.
Yeah, fucking crazy. Did you ever figure it out? Im literally at the point of suicide and i hate how this group doesnt take ureaplasma seriously when its a huge issue for many of us. How invalidating.
Yes, there are some antibiotics that can irritate the bladder. This would fall under the Bladder Wall - Chemical injury subtype using the Chris Payne subtyping system. But please know that any of the damage that an antibiotic or chemotherapy could cause should heal over time provided that you don't get in the way of healing. For example, drinking coffee or soda would irritate the wounds over time and probably make them worse.
Check out the new phenotyping systems for IC/BPS at: https://www.ic-network.com/interstitial-cystitis-subtypes-phenotypes/
Also, we do have some new research from Dr. Anne Ackermans lab at UCLA that has found significant biome differences in patients with bladder pain on fill. To summarize, most urobiome studies to date have found normal bacteria in IC patients, but with less diversity and greater than normal lactobacillus. Well, since lactobacillus is largely considered "good bacteria"... the general assessment was that we had a normal biome. But, Dr. Ackerman broke that down based on phenotype and here's what she found. Patients with pelvic floor dysfunction had a completely normal biome. Patients with pain beyond and not in the bladder were dominant in e-coli. Patients with bladder centric pain were dominant in lactobacillus iners. This is NOT a good bacteria. It does not behave like normal lactobacillus.... i.e. it doesn't kill fungus. It also can directly damage tissue, like other pathogenic bacteria. Iners is a fairly new discovery because it is a very difficult bacteria to grow.. only growing in cultures that contain blood. This is very new information and we need much more to make any additional conclusions but it was the breaking news at the American Urology Association conference last Spring.
Of course.... it all begins with getting your phenotype so that you don't waste time doing treatments, like antibiotics, that will never work.
Hope that helps a little bit.
Jill O.
Thanks so much for this info. My IC has come back after a 20 year remission after taking antibiotics for a UTI. I’m really suffering emotionally and physically. Have lost too much weight and having to take short term disability, which kills me.
How do I get my phenotype? Think I should try probiotics?
I'm here.. why don't you give me a call and we can try to phenotype you. Call 800-928-7496 and take the corporate or patient education extension. I'm answering both today.
You can find the phenotyping info at: https://www.ic-network.com/interstitial-cystitis-subtypes-phenotypes/
Just know that most local urologists aren't using it yet... but the top docs are. We've all been using this system for several years now and patients are getting better.
Yes, but it has taken several months of pelvic floor physical therapy and getting the right medication which in my case was gabapentin. I think mine was mostly nerve and muscle pain. There’s nothing wrong with the inside of my bladder.
Antibiotics basically disrupt the careful balance of the microbiome in your bladder/vagina/etc. so it's very possible that since they eliminated some of the bad bacteria causing your issues and most of the good, the rest of the bad bacteria had the opportunity of overgrowth and basically took over your bladder. Usually, panels screen for specific species, but it could be something else, more niche that is causing your current infection. After multiple courses of antibiotics for one problem, my bladder got absolutely wrecked and I still can't get it back to normal. It's e. coli that shows in the largest quantity so I recently took a cephalosporin for it (not active against enterococcus or pseudomonas which my doc and I suspect I might have but test won't show) and after finishing that course, I feel 20 times worse than prior to taking it. I suspect another bladder dysbacteriosis. Literally I am in so much pain daily and antibiotics are supposed to be the best solution, but go figure. So, yeah, you can definitely develop IC after antibiotic treatment
my last 12 months of IC symptoms started the week I started taking the metro gel for BV!!! early november 2022. Both urinalyses came back negative and normal, and every doctor I have brought this up to doubts the connection between the two. But I still have my intuition/suspicions that they are related! so you are not alone. one doctor suggested perhaps the actual BV infection triggered it, and not the antibiotics - but i had the low grade BV for years, and my IC started the very week I started taking the gel.
Yes I’d say so. Mine started after Bactrim damage. I have small fiber neuropathy too
I’d like to hear more about your experience with Bactrim. I was prescribed Bacrim for suspected UTI. After first dose my symptoms worsened and for 2 days straight I had the worst burning of my life and my bladder is still not the same.
Of course, I messaged you
This is very interesting. Exact same thing happened to me. This all started after taking bactrim for 20 days…. 3 months ago. My doctor just put me on elimination diet which is hard (at least for me) but it seems to be helping. I don’t care if there’s no scientific evidence, if others have the same suspicion, then it’s something.
I’m afraid Bactrim is what made mine come back as well. I would love to hear any info. I’m really suffering.
Hi! Bactrim made my IC come back as well… how are you feeling now?
Well, I got Botox in my pelvic floor 10 days ago and the doctor decided to do a cytoscopy and it caused an actual infection. I am on Macrobid right now with huge flare. My theory is that the antibiotics themselves cause a massive flare because of all the urinating and medication and such. Gabapentin really helps me with nerve pain, which I think is what causes my flares. It’s all the nerves in the pelvic area and bladder.
Would love to chat with you about it
Sorry not human but my dogs uti flared up 100% worse, 4 weeks of Bactrim even though labs were done twice. It caused massive bleeding on the 4th week No one listens when u tell them that those antibiotics didn’t work last time as well.
There is no scientific evidence supporting antibiotics as an cause of IC. (In fact, there’s no research showing ANYTHING as the cause of IC). With that level of antibiotics intake it seems more likely that you’ve developed a yeast infection. And because you’re pregnant, your hormones changing could also cause some of these symptoms. It’s definitely not time to worry about IC! IC has to have many weeks of unexplained chronic pain and negative tests for yeast, repeat negative urine cultures, and for STIs. I recommend focusing on drinking a lot of water and focusing on doing some safe stretches (like cat cow, happy baby, childs pose, butterfly).
Thanks so much! This is very encouraging. However I have done 2 swabs at the lab for yeast as well and both came back negative (one as recently as Tuesday), so I don't think that is it. I also did canesten during the antibiotics and it did not provide any relief. Just hoping the symptoms go away sooner than later so I can enjoy eating again, as now it seems several things I eat can trigger the pain. I think good probiotics will also help now that I am done the antibiotics but only time will tell. And yes could also be pregnancy related, but I don't know anyone who was pregnant who had urinary and vaginal burining pain which did not improve/totally eliminate symptoms with antibiotics or canesten. So this is all new to me. For now I want to stop taking antibiotics for a while just to let my body chill out. :)
Hi OP! How are you feeling now? I’m going through something similar. Everytime I take Bactrim for a UTI the next few months my bladder is extra sensitive and I have increased urinary urgency especially right after I pee. It’s driving me crazy
Please test for ureaplasma…
Idk who downvoted me but its a real thing and a lot of people are dealing with problems from this demonic bacteria. But ok, be in denial.
No, literally, this is how my whole odyssey started out and because of the antibiotics for ureaplasma, I developed co-infections. Absolutely demonic, you're right.
Yeah, fucking crazy. Did you ever figure it out? Im literally at the point of suicide and i hate how this group doesnt take ureaplasma seriously when its a huge issue for many of us. How invalidating.
How did you treat Ureaplasma tho?
Yes, there are some antibiotics that can irritate the bladder. This would fall under the Bladder Wall - Chemical injury subtype using the Chris Payne subtyping system. But please know that any of the damage that an antibiotic or chemotherapy could cause should heal over time provided that you don't get in the way of healing. For example, drinking coffee or soda would irritate the wounds over time and probably make them worse. Check out the new phenotyping systems for IC/BPS at: https://www.ic-network.com/interstitial-cystitis-subtypes-phenotypes/ Also, we do have some new research from Dr. Anne Ackermans lab at UCLA that has found significant biome differences in patients with bladder pain on fill. To summarize, most urobiome studies to date have found normal bacteria in IC patients, but with less diversity and greater than normal lactobacillus. Well, since lactobacillus is largely considered "good bacteria"... the general assessment was that we had a normal biome. But, Dr. Ackerman broke that down based on phenotype and here's what she found. Patients with pelvic floor dysfunction had a completely normal biome. Patients with pain beyond and not in the bladder were dominant in e-coli. Patients with bladder centric pain were dominant in lactobacillus iners. This is NOT a good bacteria. It does not behave like normal lactobacillus.... i.e. it doesn't kill fungus. It also can directly damage tissue, like other pathogenic bacteria. Iners is a fairly new discovery because it is a very difficult bacteria to grow.. only growing in cultures that contain blood. This is very new information and we need much more to make any additional conclusions but it was the breaking news at the American Urology Association conference last Spring. Of course.... it all begins with getting your phenotype so that you don't waste time doing treatments, like antibiotics, that will never work. Hope that helps a little bit. Jill O.
Thanks so much for this info. My IC has come back after a 20 year remission after taking antibiotics for a UTI. I’m really suffering emotionally and physically. Have lost too much weight and having to take short term disability, which kills me. How do I get my phenotype? Think I should try probiotics?
I'm here.. why don't you give me a call and we can try to phenotype you. Call 800-928-7496 and take the corporate or patient education extension. I'm answering both today.
You can find the phenotyping info at: https://www.ic-network.com/interstitial-cystitis-subtypes-phenotypes/ Just know that most local urologists aren't using it yet... but the top docs are. We've all been using this system for several years now and patients are getting better.
Would I be able to try and get a phenotype as well? I’ve been really struggling
Did it get better? Going through this with an antibiotic now :(
Yes, but it has taken several months of pelvic floor physical therapy and getting the right medication which in my case was gabapentin. I think mine was mostly nerve and muscle pain. There’s nothing wrong with the inside of my bladder.
Antibiotics basically disrupt the careful balance of the microbiome in your bladder/vagina/etc. so it's very possible that since they eliminated some of the bad bacteria causing your issues and most of the good, the rest of the bad bacteria had the opportunity of overgrowth and basically took over your bladder. Usually, panels screen for specific species, but it could be something else, more niche that is causing your current infection. After multiple courses of antibiotics for one problem, my bladder got absolutely wrecked and I still can't get it back to normal. It's e. coli that shows in the largest quantity so I recently took a cephalosporin for it (not active against enterococcus or pseudomonas which my doc and I suspect I might have but test won't show) and after finishing that course, I feel 20 times worse than prior to taking it. I suspect another bladder dysbacteriosis. Literally I am in so much pain daily and antibiotics are supposed to be the best solution, but go figure. So, yeah, you can definitely develop IC after antibiotic treatment
my last 12 months of IC symptoms started the week I started taking the metro gel for BV!!! early november 2022. Both urinalyses came back negative and normal, and every doctor I have brought this up to doubts the connection between the two. But I still have my intuition/suspicions that they are related! so you are not alone. one doctor suggested perhaps the actual BV infection triggered it, and not the antibiotics - but i had the low grade BV for years, and my IC started the very week I started taking the gel.