In 2017, I can honestly say I have a UTI history that dates back 30 years. They were always post-coital, tested positive for bacteria and always responded to a course of antibiotics. However, this changed in 2000, when the first hint of an embedded UTI emerged.
Jump To Section:
- The First Sign Of The Chronic UTI To Come. >>>>
- And So My Embedded UTI Began. >>>>
- I Refused To Accept A Diagnosis Of Exclusion. >>>>
- A Practitioner Who Understood Chronic UTI. >>>>
- My Chronic UTI Treatment. >>>>
The First Sign Of The Chronic UTI To Come
In 2000, after having another UTI, my symptoms did not fully resolve after a course of antibiotics. After many months of continuing symptoms, several different antibiotics and a series of negative tests, I was referred to a urologist and sent off for an ultrasound.
The infection eventually became severe and I was bleeding from the bladder. The next test was positive for E. coli and a ‘raging infection’ was confirmed by cystoscopy the following day. I was given a three-week course of antibiotics followed by a three-month low-dose, prophylactic antibiotic course of Macrodantin.
“I was told I had probably experienced a low-grade infection that had kept under the testing radar.”
My acute symptoms cleared quickly and the remaining symptoms resolved over time.
And So My Chronic, Embedded UTI Began
From 2000 I had my occasional post-coital UTIs that tested positive and always responded to antibiotics. This changed once again in 2008.
After a bad infection, my symptoms did not fully clear with several courses of antibiotics and subsequent tests were negative for bacteria (but showed leukocytes, blood, epithelial cells and ‘no significant growth’).
After a number of months of continuing symptoms, I was sent back to the urologist. He suggested that sometimes antibiotics have an ‘anti-inflammatory effect’, which he said explained my improvement while taking them – but there was no longer an active infection. It was concluded I had developed an overactive bladder from the initial infection.
“My symptoms (bladder burning, urethral burning, burning on re-filling, frequency etc) continued, and I gave up on seeing doctors.”
I was trialled on an anti-cholinergic (Ditropan) which did not help. My symptoms (bladder burning, urethral burning, burning on re-filling, frequency etc) continued into 2009 and I gave up on seeing doctors.
During this time I discovered d-mannose and took it daily. This helped ease my symptoms and slowly they resolved.
I Refused To Accept A Diagnosis Of Exclusion
Things had returned to normal and I only had the occasional post-coital UTI that tested positive for bacteria and always responded to antibiotics.
Once again, this changed in October 2013. After feeling a UTI developing, as usual I tried to ‘flush’ the infection through by drinking copious amounts of water, as had been recommended by different doctors over the years.
After seeing my GP with a very diluted urine sample, I despaired when the test came back negative and no further action was required.
My UTI symptoms continued and worsened. After a second negative test I was trialed on a course of antibiotics. After a week of no improvement, I was told to stop the antibiotics. During this period, tests showed raised leukocytes, blood and epithelial cells – and ‘no significant growth’.
By now I was suffering intense, rock-like bladder pressure, burning at the top of the bladder as well as at the base and neck, intermittent urethral discomfort and RIF (Right Iliac Fossa) pain.
This was significantly life altering. I was no longer able to work and spent the majority of my time lying flat with a heat pack over my abdomen to help ease some of the discomfort.
“I became tired, withdrawn and stopped socializing and communicating with my family and friends. I started to feel helpless and increasingly sad.”
Again, I was referred to a new urologist who sent me for a special urine test and a CT scan. He said I would need a cystoscopy before he could diagnose me with Painful Bladder Syndrome (PBS). He mentioned the ‘autoimmune’ theory and how this was connected to women when under ‘stress.’
I did not accept the offer of the cystoscopy or the PBS diagnosis and started my own research. I was sure my problem was linked to infection, as it had been back in 2000. I was certain I was suffering from an embedded UTI.
Finally, A Practitioner Who Listened And Understood Embedded UTI
In my research I came across the words ‘occult bacterial infection’ and this struck a chord with me. I was then extraordinarily lucky to come across a very knowledgeable and informative online group and learnt about the work of an English Professor who ran a specialist clinic in London treating complex, recalcitrant urinary infections.
I spent the next couple of years managing my symptoms the best I possibly could and learning everything I could get my hands on about embedded bladder infections.
In 2016 I finally travelled to London to see the Professor. At my appointment he asked for a fresh, undiluted urine sample which he looked at straight away under his microscope. He was looking for signs of infection, in particular white blood cells and epithelial cells.
He then listened closely to my UTI history and asked lots of questions about my symptoms. Unlike all the other doctors I had seen in Australia, he seemed very interested in my symptoms. He also performed a quick, non-invasive physical examination.
“I was diagnosed with a chronic UTI and he explained I’d probably had the infection for some years.”
He started me on antibiotic treatment immediately and warned me that it was likely to take some time to completely clear this type of embedded infection.
My Chronic UTI Treatment
Part of managing the treatment is to monitor symptoms, along with urinary white blood cells and epithelial cells. Local clinical labs refused to do this, so I found a trained person who agreed to do this independently.
I was to keep in contact with the Professor by phone and email and he would communicate with my local GP.
I was very lucky that my GP was so supportive and agreed to help with this unconventional approach. It was clear from the beginning she wanted to help me, but she had no experience or understanding of this condition or how to treat it without guidance.
Early into treatment I had a change in antibiotics when we noticed my white blood cells and epithelial cells had suddenly shot up. They soon dropped back when we introduced a new antibiotic.
“In all, it took around eight months before I noticed my symptoms had been gradually improving.”
It’s common for urinary signals to improve long before your symptoms do. I have been on treatment for my chronic, embedded UTI for 14 months and I’m now 80 percent better.
I experience occasional symptoms that might affect me for a brief period, but from my understanding of the science, I know this happens when infected bladder wall cells shed and the offending bacteria become active. It never lasts very long.
Even though my symptoms have improved enormously, I still have a way to go before I completely eradicate the infection.
If these infections remain undiagnosed and untreated over a long time (which happens because it’s such a poorly recognized and misunderstood form of UTI, which current testing cannot identify) they can become deeply embedded into the layers of the bladder wall. This means treatment can take a long time.
Many people are judgemental about taking antibiotics for extended periods, so I choose not to share this with those who don’t understand my condition. Sometimes I get comments from a pharmacist or sales assistant, so I fill my prescriptions at different pharmacies so I can avoid this.
On top of having this horrible condition, receiving judgment is extremely frustrating and unfair to deal with. Currently, long-term antibiotic therapy is the only appropriate and available treatment for people like me with a chronic, embedded UTI.
The London clinic receives many international patients, but I know not everyone can travel overseas to see a specialist. It took me over two years of on-going pain and suffering before I made this drastic decision, although now I wish I hadn’t waited so long.
The Situation In Australia Needs To Change
We desperately need a specialist in Australia who is educated and trained in diagnosing and treating chronic, embedded UTIs. At the moment, there is just one website, Chronic UTI Australia, that addresses this issue in the region.
This whole experience has been a horrible ordeal. In Australia I was put through various testing, including ultrasounds (as well as several transvaginal scans), CT scans, cystoscopy, several pap smears and a pelvic MRI.
“I was angrily berated by a specialist until I cried at their desk. I was told by one doctor that I research too much, and told by another it was time to focus on my life and not my bladder.”
Inadequate test results were given more credibility by doctors than the symptoms I was experiencing — which is not only disheartening, but insulting.
This is what I’ve learnt from my chronic, embedded UTI ordeal:
- Current lab testing is NOT sensitive enough to pick-up embedded infections.
- Test results showing levels of leukocytes, blood and epithelial cells indicate INFECTION is present.
- It is untrue that infections can only be caused by a single species of a known urinary pathogen. This means reports of ‘No Significant Growth’, ‘Mixed Growth’ and counts of epithelial cells DO NOT mean the sample was contaminated and should NOT be ignored.
- Doctors and specialists pay far too much attention to lab reports and do not give enough credibility to a patient’s symptoms.
- Sadly, doctors and specialists, worldwide, are invested in the current status quo and will aggressively defend their positions.
- Testing needs to change and GPs need to update their understanding of chronic, embedded UTI so they can help treat their patients.
To get answers to commonly asked questions about chronic and recurrent UTI, visit our FAQ page. Share your questions and comments below, or get in touch with our team.
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Comments
Can you share the details of the London doctor?
Hi Sara, I just sent you more info by email. Melissa
I can relate to all of your comments. This is my second several-month bout with UTIs. My first bout was about a year ago, and eventually got cleared up after taking several rounds of antibiotics. Now I’m back to square one – having just completed 3 rounds of different antibiotics, and still not feeling well. The doctors are recommending Cipro (here in Israel it’s still prescribed) but I’m really nervous about the potential side effects. Wondering if anyone has any insights or advice? Not sure what’s worse – a continued UTI or potential tendon and nerve damage.
Hi Ilana, we just sent you an email with some more information and links to UTI support groups that may be helpful. Melissa
I took three consecutive doses of Fosfomycin. The dosage should have been every three days for a total of 7 packets. By third day I developed C.Diff and had a recurrence. Battled misery from January 13, 2022 to March 12, 2022. Would I even attempt another round. Diagnosed with IC 18 months ago and Microgen testing in December identified positive for enterococcus. Please advise.
Hi Gloria, I’m wondering if you received our email last November with more information, and if you were able to work with any of the practitioners? Feel free to respond by email so we can chat more there. Melissa
Hey Anna! I have found this article extremely relevant, thanks so much for sharing and I sympathise so much with the frustration of not feeling properly acknowledged. At the moment, I am trying to work out if I have interstitial cystisis or an embedded UTI – could we perhaps chat more about your journey / symptoms at some point?
Hi Freya, I just sent you an email with some information that I hope will help. Melissa
Hello, would a bladder biopsy show up any embedded infection?
Hi Gail, it is possible, but it depends somewhat on whether the biopsy is collected in a location that contains embedded infection, and on the type of testing used. Dr Hlavinka mentioned this topic in his video interview, if you’d like to watch it. Melissa
Hello! Your story sounds like mine! I have had UTIs constantly for over two years and also a few kidney infections. I have gone to three urologist, a gyno, had scans, scopes, so many tests only to not have any answers. From the beginning of this UTI they have not responded to antibiotics and I’m on them every two weeks just to get relief and make sure it doesn’t travel to my kidneys. I am seeking out help! I’m willing to travel to NY after reading about embedded UTIs and a doctor that has dealt with this. I called, he currently only takes cancer patients, but the lady wrote my name and number down. I’m not sure who to trust and I feel cheated! Can you send me the doctors info you went to? Thank u!
Hi Jenifer, I just sent you an email with more information. I hope it helps, Melissa
I’m in Nz and I’m wondering if there are any specialists here ,who believe in embedded infections and follow that line of treatment
Hi Jess, I saw that you also sent us an email, so I’ve replied there with more information. Melissa
Hi, I am only 22 years old and it’s been 7 years that I have constant burning pain in my urethra and in my bladder. If I dont drink enough water it burns directly.
A few months back I finally went to go see a urologist, and he had never heard of my condition. He never gave me any medication, however I had to go through 3 examinations of my urethra and my bladder (with a little camera) causing immense pain. My urologist then came to the conclusion a dilation of my urethra needs to be done as it was significantly small. I now still have the frequent pain…
I am glad to hear all these stories as I no longer feel alone, it’s saddening and hard to go through. I would to go see your doctor in London, if I could please get the contact! I am so desperate
Hi Shauna, I just sent you an email with more information. Melissa
Hi
I’m been dealing with recurrent uti for 12 years I’m so sick of this and no doctors can help me ! I try everything d mannose drink lots no sex don’t know what to do anymore !
Hi Rita, can you send me a direct message and let me know where you’re based? Melissa
Hi Melissa,
I’m based in London and struggling with, what it seems, identical “overactive bladder” prognosis! Please can you email me the London Clinic and doctor who helped you?
Thank you,
Victoria
Hi Victoria, I just sent you an email with more information. Melissa
Please can you tell us the name of the antibiotic it worked because I have the same issue with high epithelial cells but no leukocytes and the Dr wants to diagnose me with interstitial cystitis
Hi Rita, Anna’s treatment was individual to her own experience, and we can’t share specifics. If you’d like more information about how she went about finding a specialist, please send me a direct message and let me know where you are based. Melissa
My partner has been experiencing UTI’s for a few years now, but only recently reached a point where she has been in intense pain which has lasted 3 months and still hasn’t had any signs of improvement. We’ve gone to different doctors, done different tests and scans, but they turn her away because they cant find anything and they don’t understand what she’s experiencing.
I’ve been trying to locate a specialist for a while now, what is the name of the clinic you went to in london? As im in the uk myself. Hope your well, and i hope you hear back soon.
Hi Cal, I just sent you an email with more information. I hope it helps, Melissa
After reading this article, I think I may have an embedded uti. I would love to speak with or email someone there to see if my symptoms suggest this, or not. Thank you & hope to hear from someone soon.
Hi Wendy, can you send us a direct message and let us know where you’re based? I can share relevant resources by email. Melissa
Hi reading your post made me realise I’m not imagining my nightmare. I had a uti which went untreated for months. I finally took a weeks course of antibiotics. I still had stinging burning pain after eating, bloating and right illiac pain. All my urinalysis came back negative and the doctors were dismissive of me. A year into it it’s recurred. Could you send me the information on your doctor from uk does he take online appointments? It’s impossible for me to travel there for treatment. I live in India and do you know any doctors here who treat embedded infections? And what are the diagnostic tests that helped identify embedded infection? Thanks a ton for your post !
Hi Prad, the specific clinician that Anna mentioned does not provide initial appointments online. I saw you that you also sent us an email so I’ve replied there with some alternative options. I hope it helps, Melissa
Hi Melissa,
I’ve been getting recurrent UTIs with similar symptoms and clinical assessment outcomes (no growth, trace leukocytes etc) as you for 3 years now. I’m based in the UK, and I would really appreciate the details of the Professor you mention to see if they can investigate. Thanks, Sasha
Hi Sasha, I saw you sent us an email too, so I’ve replied there with more information. Melissa
Hi can I please get the name of the UK professor please?
Hi, just like many others I would love to know more about this Professor in London, could you send me his details? Thank you so much!
Hi Marion, I just sent you an email with more information. I hope it helps. Melissa
Brittanee, I just sent you an email with more information. I hope it’s helpful, Melissa
Please can you tell me more what treatment worked for you? I am in bed at 5 am in pain hopeless and I just want to feel some relief 🙁
Hi Mina, I just sent you an email with more information. I hope it helps. Melissa
Could you please tell me name of the Professor? Thanks
Hi Sue, I saw you also sent us an email and I’ve responded there with more information. Melissa
Hi Melissa,
Thank you so much for this article! I’m wrung out from all the intermittent UTIs I’ve been having, and facing doctors who think it’s either dehydration or pregnancy :/
I currently live in London, and was wondering if you are open to sharing the name of the professor / specialist clinic you visited in 2016! I would love to do more research and see if they have any openings for appointments 🙂
Hi Ellie, I just shared more info with you by email. Melissa
Thank you so much for this! Your honesty, willingness to share and determination have helped me considerably! I would love to get the professor’s contact in London as I’ve been dealing with similar issues for 25years. I completely agree that the current tests are not sensitive enough and the medical field is sadly very unsuccessful in treating this issue. I have been getting some relief through acupuncture and Chinese herbs, but still I suffer flare ups. Thank you again!
Hi Micah, I saw you also emailed me some questions, so I’ve responded to everything there. Melissa
Hi, this story sounds like mine. I’ve been having bacterial UTI’s over a year which hasn’t been treated right because they only recently found out which bacteria causes it. Now my bladder lining is damaged and it’s called IC. I would love to get in touch with your doctor in London. Could you let me know who he is?
It would only be an hour long flight away when COVID is over.
Hi Maaike, I just sent you an email with more information. I hope it helps. Melissa
Hello, i have been suffering from a uti for a couple of months now and nothing seems to work. After taking antibiotics, my uti cleared up on tests but i still have some symptoms. Do you mind sharing the name of the doctor and how did you book your appointment, how long it took to see the doctor, and how much it costed overall? I live overseas but i’m planning to go as I can’t find any solutions here . I would really appreciate it.
Hi Vammy, I just sent you an email with more information. I hope it helps. Melissa
Can I please have the name of this London specialist? Does anyone know the name of a specialist like that in the US? Thank you!
Hi Charlene, I just sent you an email with more information. Melissa
Hello, this is exactly what I have and no doctor is taking me seriously! Could you please post the contact from that Doctor in London please? It would mean so much for me to fix this, I’ve had it for 4 years now . Please it would really help me to know which clinic you went to
Hi Lama, I emailed you some more information about this. Melissa
Hello! Thanks so much for sharing your experience. I, too kept getting negative tests for a UTI but positive for E. Coli! I would love to know what doctors look for embedded infections in the US. I’m in Seattle, WA. Thank you!
Hi Melizza, I saw you also sent us an email so I’ve replied there with more information. Melissa
Hi, thank you for sharing all that you’ve been through. Would you be able to send me the details of the doctor you saw in London please? With kind regards and thanks Rebecca
Hi Rebecca, I just sent you an email with more information. I hope it helps. Melissa
Thank you for the info. I have been living a nightmare the past few months with utis that dont responding d to antibiotics. Could you send me a list of doctors in the US that treat embedded infections. Thanks
Hi Alison, can you please send me a direct message and let me know which state you are based in? Melissa
Hey,
thank you for sharing this story! Could you give me the name of the Prof. located in London?
Hi Sophia, I saw you also sent me an email so I’ve just replied there with more information. Melissa
Please can you email me the doctor in London please x
Hi Nicola, I just emailed you with more information. Melissa
Could you send on the details of who you went to see in London please? I’ve been struggling with this for years now I am so thankful you have posted this x
Hi Jade, I just emailed you with more information. I hope it helps. Melissa
Hey. I’m based in the UK and would love to know who you went to see in London. I’m 20 and I’ve been dealing with my symptoms for 3 years and I’ve never properly been diagnosed. I’ve been told it’s likely ‘IC’ and put on Amitriptyline but I really think it could be an embedded infection.
Thanks,
Lucy x
Hi Lucy, I shared more information by email. I hope it helps. Melissa
I’ve been struggling with this same thing all year. I am 19 and don’t want the rest of life to be like this! Could you please email me any links you have, I live in NZ and as far as I’m aware I don’t think there is heaps of research into it over here so I feel super hopeless. Thanks in advance!
Can you please recommend a specialist in Pennsylvania?
Hi Angela, I just sent you an email. I hope it helps. Melissa
Hello can you email me some info. I have been getting recurrent utis for over 5 years now and nothing is working x
Hi Caroline, I’ve sent over some more info via email. Susy
Hi Piper, I just emailed you some information that I hope helps. Melissa
Hi,
Your story is a miracle. I have the same symptoms and I always come up negative. I even sent my urine to microgendx and there is trace of an embedded infection. Is there a doctor in the USA that will treat me for an embedded infection? I am so desperate and I cant imagine living the rest of my life like this.
Gabby
Hi, I think I have an embedded uti. I know when I started getting uti’s when I was 16 it eventually never went away I’m currently 21. Is there a way I can get treated in the U.S? Thank you!
Hi Bria, can you please send me a direct message and let me know what state you are based in, and whether you are specifically interested in treatment like that which Anna pursued? Melissa
I am going through this right now. Cultures are coming back negative but I after years of UTI’s I know what one feels like. They are trying to diagnose me with IC. Where can I get help in Canada?
Hi Lisa, I saw you also sent me a direct message, so I’ve replied with more information by email. Melissa
Hi Gabby, we are building a network of practitioners in the US that may be able to help you investigate deeper. If you send us a direct message and include where you’re based, it’s easiest for us to share info that way. Susy
I feel like crying reading your page. I am 34, due to get married in 3 months and living in chronic bladder pain. I can’t plan ahead, we can’t try conceive and I feel so low. I am going privately with a top nz urologist. Can you email me a suggestion for treatment? I believe strongly I have embedded uti. I don’t know how I’ll repay you, but I’ll do my best! Thank you. X
Hi Libby, I just sent you an email with some links and information. Melissa
Hi Anna,
Could you please email about the professor that helped you?
I am in Austin, TX, US.
I’m hoping to get a referral to someone local.
Thank you
Hi Amber, I’ve sent some info and resources through via email. Susy
who precisely is the London professor you recomend.
GPs in London are as bad as in Aussie.
Hi Woods, I just sent you an email with more information. Melissa
Hi
Melissa
I was recently diagnosed with IC and believe I have imbedded infection and would love to know more details of the Professor you saw and what testing I should have done before contacting him.
I am in Melbourne ( Mooroolbark) and would love to know if u can suggest any Drs or specialists.
Thanks
Nicole
Hi Nicole, I just sent you more information by email, in addition to what I’d emailed earlier. I hope you’re receiving those messages. Melissa
Hi Anna, thank you for sharing your story… I’m happy you are finally doing much better.. I was just diagnosed with mild interstitial cystitis and pelvic floor dysfunction, last month. I had been on antibiotics for over 8 months with no improvements; and just like you, my urine culture always came back negative (no significant growths) and 3+ leukocytes… I have been doing lots of research, and want to rule out any undetected infection as well… Could you please send me details of the professor in London, as well as specialists you know in Australia? Thank you so much..
Hi Q, I just emailed you more information about Anna’s experience. I hope it’s helpful. Melissa
Hi, please could you send me details of the professor in London? I’m quite desperate after 8 years of symptoms and many rounds of antibiotics, following infection caused by a post-op catheter. Also, are there any natural remedies that you know of as an alternative or adjunct to long-term antibiotics? Thanks, Tammy
Hi Tammy, I saw you also sent me an email so I’ve replied there with more information regarding both of these questions. Melissa
I have been diagnosed with IC. However none of the IC remedies have helped and I have almost done them all. Are you able to share any details of practitioners who treat chronic uti in Brisbane?
Hi Jane, I’ve shared some resources with you via email. I hope that helps, Susy.
Thank you for your story. I am in the US and have both IC and Vulvodynia with chronic infections. I’m just wondering if your physician ever told you what bacteria was found..just curious. What is commonly embedded?? My urine is always negative but have white blood cells. I always have pain and burning. Years and years now. My story is just too long to write bit again thank you!
Hi Debbie, the approach used by the physician Anna saw looks for epithelial cells (bladder lining cells) and white blood cells to identify the presence of infection, rather than attempting to identify possible causative bacteria. I believe there will soon be some researched published on pathogens commonly found in embedded infection, but until then I can’t share any concrete information. Regarding testing, you might like to read our article on why standard urine culture may be negative even when infection is present. Melissa
Hi there. I’ve been diagnosed with IC but over this long period of time I believe that I myself have an embedded UTI as well. I live in Atlanta, is there any specialists that you know of near me that practices the same as the professor in London? Thank you so much.
Hi Kristin, I just sent you an email with more information. Melissa
Hi who is the doctor in Louisiana? Thank you.
Hi Ashley, I also sent you this information by email. Melissa
Hi, I was diagnosed with IC end of 2018 but looking back I wonder if I was having a terrible UTI that was not able to be diagnosed. Since I found a doctor that does DNA urinalysis that finds infections regular ones cannot and I have had infection after infection so I’m assuming it is embedded. I have even done antibiotic installations that helped while I was using them. What antibiotics do you use long term for treating your embedded infection? I am in Houston TX so if you know anybody who treats these please let me know!
Hi Ashley, I just emailed you some information that is relevant for Texas. I hope it helps. Melissa
Hi, thank you for this information. Please tell me who Is the London Specialist consultant you saw. I have had UTIs for 50 years and now have ended up in hospital with awful symptoms but the urine test is ‘negative’ for a second time.
Desperate now. Penny, London.
Hi Penny, I just sent you an email with more information about this. Melissa
Hi Melissa,
I was diagnosed with IC in 2008 and have been living a relatively okay life with the illness up until last year in 2019 when I had a UTI. The symptoms I experienced, burning, lingering urination and a change in the odor of my urine lead me to believe this is not simply IC that has gotten worse but an infection that has not been detected.
Do you know of any specialists in Atlanta, Georgia or surrounding areas?
Hi Amanda, I’ve sent you an email with some further info. I hope you find answers soon! Susy
Hi!
Thank you so much for this article. I have been plagued with UTI’s for the last two years and cannot seem to get rid of them. I would be very interested in visiting the doctor you saw in London. I would be grateful if you could send me their details
Thank you so much
Fiona
Hi Fiona, I’ve sent you an email with some more info. I hope you find answers soon! Susy
Hi, I’m in San Francisco. I used to have a chronic UTI history many years ago but have been fortunate to not have them for several years at a time lately. But now I had one but the culture showed nothing. I’m on antibiotics but still have some bladder pain. I’m worried as the test showed white blood cells and the Desk seem confused. Is there a specialist in San Francisco?
Hi Brianna, at the moment we don’t know of any specifically in San Francisco, but I have emailed you some information for California, and telemedicine is also available. Melissa
Do you know is any doctors in Washington State that deal with embedded UTIs? Thank you.
Hi Staci, I just sent you an email with more information. I hope it helps. Melissa
Do you know of any good doctors in Colorado? Thank you!
Hi Lauren, I just sent you an email with more information. I hope it helps. Melissa
hi do you know anyone good in Sydney my story is like yours 7 years of hell test scans gp specialists . I’m living in constant pain don’t know how much more I can take .
Hi Emma, I just emailed you with some information that may help you find a way forward. I hope it helps, Melissa
Hi, could you please tell me what antibiotics you took that helped? I Currently live in Australia and they only use dipstick testing on urine which misses like 50% of infections.
Hi Madeleine, as every body is different, it is always best to work with a practitioner to find the cause of your own infection and the right treatment for that. I saw your other comment regarding practitioners in QLD, and have sent over an email with some local info. Take care, Susy
Who is the dr you saw in London? I can’t find a urologist to help me ;-(
would like info on who you contacted in London
Hi Eve, I just sent you an email with more information that may help. Melissa
Hi Kelly, I’ve sent you some more information and options via email. Susy
Hi, could you send me information as to who you saw as well please? Thank you!
Hi Heike, I just emailed you with more information. Melissa
Hello Melissa,
Thank you for this incredibly helpful article and for sharing the info with us! I’m based in Canada, and have been suffering from something awfully similar for 10 years now, on and off. No blood/urine tests, cystoscopy, ultrasound ever helped, and I had many.
If you could please share some resources with me, it would be greatly appreciated!
Hi. I’ve been having alot of issues with utis for about 4 years. My urinalysis shows protein. Bilirubin. Urobilinogen. WBC 50+ many sq cells. Esterase hyaline cast and ketones in my urine. But my urine culture comes back negative. They but me on macrodantin for 5 days. I’m not sure if that’s going to be a strong enough antibiotic because I’ve had this so long without treatment. My its chronic now or embedded. My symptoms are fatigue. Nausea. Pain in my lower abdomen. Right side and my lower back. I’m scared because I feel its getting worse.i dont want sepsis or kidney infection
Can you tell me what all this means? Thank you
Hi Laura, I’m really sorry to hear you’re experiencing this. You’re not alone, we hear many similar stories. We’ve also had many people tell us that finding a specialist to work with marked a turning point towards healing. If you don’t know where to find a specialist, you can send us a direct message letting us know where you’re based and we can share some names we know of. Take care, Susy
Hi Ibi, I saw you also sent us an email with more information, so I’ve replied there regarding clinicians who may be able to help. Melissa
Hi Melissa, Your story really resonates with me, I live in Canada and have been battling similar symptoms for months! Would you be willing to share some information, and what antibiotics you have seen success with? Thank you!
Thank you for sharing your story can you also share your regimen with me?
Hi Nancylee, Anna worked with a chronic UTI specialist following a specific protocol. If you’d like more information about that, can you please send me a direct message? Melissa
Hi Lori, I just sent you an email with more information. Antibiotics are specific to the bacteria identified, so it’s not possible to make a general comment on antibiotic success. We hear many different experiences from thousands of people. Melissa
I have the repetitive problem every time after sleep with my bf. Please share more information. Thanks.
Hi Jane, I just emailed you some information. Feel free to ask any questions there. Melissa
I have been battling a uti for several months. I have seen a gyno and a urologist. I need a specialist. I am
An American living in Czech Republic. But I am willing to travel anywhere for help. Can you recommend dr in London or anywhere in Europe? Thank you
Hi Shanna, I just sent you an email with some information about possible options. Melissa
Hi Melissa, I’m in tears as I read your story because it’s what I’m going through. Could I please have any information you have for Australia? I’m in Melbourne. Is there a Urologist that you might recommend (over others)?
I really need help with this. I’ve been on Cipro three times now and every time they take me off it and swap to a weaker antibiotic it comes back. What antibiotics do you take that are safe to use long term?
I’m relieved to have found your website as there is hope for me again now as I’m about to be labelled with a pain ‘syndrome’. Thank you in advance.
Hi Elese, I just emailed you some Australia specific information. I hope you find some answers soon. Melissa
I’ve had UTI’s for years on and off, they usually have all the readings with a dip stick, but the last twice I’ve only had blood and some protein in my sample. I got antibiotics to treat a kidney infection but a further test came back negative, I felt much better. Today I’ve had a test at the chemist and it’s came back the same blood and protein , I only got a phone call consolation and the nude thinks it’s kidney stones, I’ve to send another sample away tomorrow. It feels the same as a UTI, but I’m getting pains in my left hand side that are really uncomfortable, what can I do, thank x
Hi Janeen, can you send me a direct message and let me know where you’re based? I’ll share any resources we have that may be relevant to your location. Melissa
Hey Melissa,
I’ve just started to entertain the idea of an embedded UTI. I have a constant urge to urinate that can be worse depending on what foods I eat, stress levels & levels of water consumed! I also showed high levels of leukocytes & “no new growth” but urine samples have come back negative….despite feeling like I have a UTI! I’m based in Adelaide Australia, do you know of any practitioners/functional practitioners that offer testing for embedded UTI’s? I’ve tried searching myself but not much luck so far.
Thanks, Jacinta 🙂 x
Hi Jacinta, I just sent you an email with the information we have for Australia. I hope it helps! Melissa
I’m so glad I came across your story!! I know I have something wrong down there like a UTI and I’ve had multiple UTIs in the past. All my cultures come back negative, I’m currently having a MS relapse and it is not getting better which I believe is because of this infection they can’t find. I don’t know how I can find a doctor who listens and is educated in this. So frustrating when they keep telling me I have PBS when I’m sure it isn’t that. I’m not sure how to go about it with my doctors. I see a urologist next week, praying he signs my Microdex paperwork so I can send that off and hopefully he will LISTEN to me.
Hi Sasha, good luck with your appointment. I hope they can help! If you need more information about possible clinicians, you can send us a direct message and let us know where you’re based. Melissa
I had what I thought was a UTI at the beginning of June. I never got tested, I just drank lots of water and it went away. I had no issues with UTI Symptoms prior to this since 2012!
Then July 11th I woke up on fire with urgency. It has not gone away and I have had multiple urine tests that were negative for bacteria but positive for red blood cells and I have taken two different antibiotics. They think it’s IC and refuse to even entertain the idea it could really be an infection. Are there any specialists in Georgia?
Do you know of any doctors in Colorado who can help?
Catherine-have you seen a doctor in Colorado yet?
Hi Catherine, I just emailed you some information that I hope will help. Melissa
Hi Jennifer, I just emailed you with some information. If you haven’t already, you may also like to read our information on why UTI tests may be negative, despite your symptoms. Melissa
I first got ic 30 years ago. It disappeared for almost 7 years with a few bad days. Next I got a real uti that never cleared and six months down the track I am beside myself again. My urologist has made me feel like a woman who is over reacting when no treatment helps and I can hardly function in an executive teaching role or even in life. Can someone in Australia assist me with the possibility of an embedded uti? Many thanks.
Hi Christina, we sent you an email earlier today – I hope it helps. Melissa
Recently my doctor told me he thinks I have trigonitis, I’ve gone through 3 weeks of doxycycline. I felt a little better but now at the end of 3 weeks I feel constant pressure on my bladder. I really want to do the Microgen test and I’m looking for a doctor in the US like the one you saw in London. I live in FL but if he willing to travel. Please help!
do you have the professor’s email? I will like to see him. Thanks
Hi Cora, I just emailed you some information about getting in touch with clinicians in the UK that may be able to help. Melissa
Hi Megan, I just sent you an email with more information about this. Melissa
m I mom is suffering severe uti. She has been hospitalized with sepsis.
Hi Angela, I just sent you an email. I hope we can help. Melissa
Hi! Could you tell me the name and clinic for the specialist you saw please? I have been diagnosed with IC but I’m not convinced that’s what it is as it started up after an infection. Thanks! Amy
Hi, my girlfriend is experiencing the same symptoms as you. What’s the Name of the doctor in Louisiana please?
Hi Tom, I just emailed you more information. Melissa
Hi Amy, I got your emails so I’ve just replied there with more info. I hope it helps! Melissa
Hi Melissa,
I sent you a message earlier today regarding the doctor name. Are you referring to the doctor Malone in England?how about the one in Louisiana? The link you sent me is not working.
Thank you
Thomas
Hi Thomas, thanks for letting me know. We’re working on fixing the link issue. I just sent you an email. Melissa
Hi- Helpful info. Thank you. There is a doctor in Louisiana who learned from the Professor. He sees patients from all over the US. You need one in person appt and then he can treat you remotely.
Hi Caroline, thanks! We are aware of the doctor you mentioned and we can share more information by email for anyone that is interested. Melissa
Can I please have details about the professional who you saw in London ?
Hi Reena, I sent you some further info by email. Melissa
I think this is what I have been dealing with for the past few years. A couple of years ago I had a really bad UTI. I was dumb and in college and didn’t finish my pack of antibiotics because I was feeling better and my stomach cannot handle them well. I have terrible bladder pain that radiates to my back but urine cultures always come out negative. I’ve been told I have Interstitial Cystitis which I refuse to believe. I would love to know what antibiotic you’ve been on and if it’s affected your gut health at all!
Hi Marelisa, we hear from many people with similar stories. Can you send me an email and let me know where you’re based so I can share relevant info on Anna’s behalf? Melissa
Hi, I found this post very promising and it gave me some hope. I wondered, I have had a cystoscopy recently which showed abnormalities (i.e inflammation, hemorrhaging) and I was subsequently diagnosed with IC. Does anyone know if this rules out an embedded infection?
Many thanks,
Mia
Hi Mia, I saw you’d also sent us an email so I’ve just replied there. According to recurrent UTI specialists we have spoken with, inflammation and bleeding can be signs of infection. Melissa
Hi I got two bladder infections in January and got treated with antibiotics. The main unbearable pain went away but now I have constant bladder pain. Do you know of a doctor in Oregon? Thanks!
Hi Megan, we hear from many people with similar experiences. I just sent you an email with more information. Please check your spam if you don’t see it. Melissa
my daughter has inbeded infection in her bladder and needs tests to find out what strain of infection , given a little information about a microgendx test would like to know if you heard of it .
I am going on one month of UTI symptoms worsening by the week. On May 29th my urine culture was positive. But since then 2 more urine cultures were negative. This past Monday (06/22) my urinalysis showed leukocytes, blood and nitrites in my urine. But because the urine culture was negative, and despite my UTI symptoms my urologist is saying i’m experiencing bladder inflammation from the past UTI. I’ve done 3 rounds of antibiotics already. From everything i’m reading, and the positive results from my urinalysis it sounds like I have an embedded UTI but my urologist says I do not have a chronic UTI! What next steps should I take to get a proper diagnosis? Are there any doctors in California who treat this that I can see or any tests I can request?
Hi Sarah, we hear from many people with similar experiences! I just sent you an email with some more information. Melissa
Hi Jayne, we have covered various types of testing on our site, including MicroGenDX. You can find that information here. We also sent you an email earlier. I hope you received it. Melissa
This is exactly my problem. But I just can’t take antibiotics any longer as I have become older. My stomach just can’t cope and I’m so ill! I’m desperate to find some help but my private specialist says if I can’t take full dose antibiotics she can’t help anymore!
Any ideas please? 🙏🏻
Hi Pauline, can you send us a direct message and let me know where you’re based? I can share more information via email. Melissa
I have been having UTI’S back to back since Jan. First one I had was in August of last year and maybe two after over time but I went about 2 months without. I am seeing a urologist and at first she thought interstitial cystitis but I don’t think thats what i have at all.. I read your story and alot of comments and I seem to have similar problems. I have also done some research of my own and I believe I have an embedded infection. I have recently been put on antibiotic therapy hoping that it will work and I get my life back to normal. Did you get any UTI’S during your antibiotic therapy and they just slowed down and u kept getting less or did you just completely stop having them?
Hi, I’m suffering from this same issue and it’s just awful! I’d love to hear more about the antibiotic protocol that has helped to heal your bladder. Thanks!
Hi Nicolette, I can send you more information about Anna’s experience by email. Can you send me a direct message and let me know where you’re based? Melissa
Hi Carmen, I just sent you an email with more information about Anna’s protocol, which I hope helps answer your question. Melissa
It’s really good to hear from others in the same boat. I am miserable and confused. I have seen urologists, gynecologists and GPs and everyone has a different opinion and diagnosis and or treatment plan. I have had recurring UTIs and the embeded UTI theory seems to fit but it hasn’t been suggested by any doctor yet. I was offered a cytoscopy and bladder instil. for IC which is what the urologist suspects I have. I am going to speak to one of the chronic uti specialists tomorrow on the phone. Then I need to figure out which way to move forward. Trying the antibiotics for long term or IC treatment plan. Both aren’t ideal and I am crying as I write this as I just feel so fed up and want to feel normal again.
Where can i fond a doctor in ohio or michigan that do this approach?
Hi Juli, I sent you an email earlier. Let me know if you didn’t receive it. Melissa
Hi Adina, I can sympathise! I saw you also sent me an email, so I’ve replied there with more information. Melissa
I’ve been sick for 10 years. Can you give me the name of suite doctor please?
My wife has same symptoms of embedded uti. Please can you tell me which kind did you Uro give you.
Hi Abouyoucef, can you send me a direct message with more information so I know what information may be helpful? Melissa
Hi Mafe, can you send me a direct message and let me know where you’re based so I know what information is relevant? Thanks, MelissaContact icon 3
Hello. Do you think instillations with chondroitin sulfate (Gepan, Uracyst) can help in case of chronic embedded infection? Thanks.
Hi Ioana, I saw you also sent me a direct message so I’ve replied by email with more information. Melissa
Why don’t you answer people’s questions here? It would be good to know the answers, usually that’s how blogs work.. Please don’t be offended, I just think it would be very helpful for everyone.
Hi Ida, the research around UTIs changes every day. Our list of clinicians that may be able to help also continuously changes. If we post information here, it will be irrelevant for the next person reading the comments. It’s more work for us to share by email instead of posting here but we want to make sure each person receives information that is as helpful as possible. Live UTI Free isn’t a blog, it is a patient research and advocacy organisation with a focus on education. I hope you understand our reasoning. Melissa
please help me been dealing with uti dont stop
Please EMAIL ME I NEED HELP BADLY
Hi Glenda, I’ve sent you an email. Please check your spam if you don’t receive it. Melissa
Hi Marisela, I just sent you an email. We can chat more there. Melissa
I just completed a course of cipro + EDTA bladder instillations and while I really felt like I was making progress during that two weeks, about 24 hours after the last dose, I’m right back to where I started… I’d be really curious to know your protocol, Anna! Oral antibiotics really mess up my gut… but as all of us on here , I’m desperate for a solution.
Hi Emma, I just sent you some more info in response to a previous email you sent. I hope you receive it. Melissa
Hi
I was wondering who you went to in London. No specialists I have been to can help
Hi Karen, I can share more information about Anna’s experience by email. Can you send me a direct message? Melissa
Hi, I live in London and I have had Chronic UTI for months now and I suspect embedded bacteria as my infection always returns after antibiotics.
Thank you for your very informative website and may I ask the name of the London clinic and professor you went to? I would like to go and get myself sorted out too. Thank you in advance, and I’m glad you’re recovering
Hi Victoria, thanks for your positive feedback. I can send you more information via email if you send me a direct message. Melissa
I can relate to your story as I’ve been suffering from recurring UTIs for almost 40 years and not properly treated. I live in Montgomery County Maryland and would like information for a doctor who’s interested and knowledgeable in this field. Thank you!
Hi Bita, we can share more information about practitioners via email. Can you send us a direct message and let us know if you’re specifically looking for a clinician that uses an approach similar to that described in Anna’s story? Melissa
Hi,
I am based in London. Could you please provide me the professors clinic detail?
Thank you
Hi Tenzin, I just sent you an email with more information about this. If you don’t receive it, please check your spam folder. Melissa
terrible UTI in May, was in the ER with blood in my urine, took antibiotics and it took everything away besides terrible burning. I burn every day on and off. Diagnosed with IC in August but I don’t believe that’s it. I keep getting UTIs. I need a doctor that can help me in my area… please help
Hi there
I’m so pleased to hear that you are getting on top of your bladder issues ☺
I have had an issue now for around a year and a half, which has resulted in a recent flare up and I will need to take a month’s course of antibiotics. I too would love to know who you see in London as i feel i am not being treated correctly and feel i need a more proactive approach to get on top of this.
Best wishes to you
Louise
Hi Louise, I just emailed you more information about this. Melissa
Hi Lonnie, can you send us a direct message and let us know where you’re based, so we can share more information via email? Melissa
I resonate with this her journey. I had scheduled a doctor’s appointment with a doctor who will perform the urinalysis from Microgen DX. However, I would love more advice on someone for embedded UTIs? I’m in Birmingham, AL. I’ve been diagnosed with IC, but I don’t think it’s a true diagnosis. I had one UTI in my life and since then, I’ve been miserable.
Hi Abigail, sorry to hear you’re experiencing this, you’re definitely not alone. Can you send me a direct message so I can share more via email? Melissa
I have had a UTI since July most likely. I feel like when I visit my GP office they very much rely on the test results versus the symptoms I explain. I have been on 5 rounds of antibiotics in the past 2 months alone. Finally, on Monday I will be seeing a urologist and I hope he will better treat me. I feel like the antibiotics definitely help me but when I go off them within two days I start feeling symptoms again.
I would love to know more about the treatment you received. I feel like this problem is beginning to take control of my life and it seems never ending. I never imagined that at 25 I would hide inside due to the constant burning and discomfort of an unrelenting UTI. I feel like I’m in the doctors office nearly every week.
I’ve had 5 months of antibiotic and only am free of burning while of the meds and two weeks after. Do you know any specialists in the Boston area?
Hi Patty, I’ve emailed you some more information. If you don’t receive it, please check your spam folder. Melissa
Hi Jessica, sorry to hear you’re experiencing that. I can sympathise. The treatment Anna mentions in her story above is based on a protocol used by some specialists in the UK. If you’d like more information about this protocol, can you send us a direct message and let us know where you’re based, so we known which resources are most relevant? Melissa
1st UTI at 17, and 15 yrs later still suffering. After having my daughter 7 yrs ago, I managed 6.5 yrs UTI free. But, they are back.
In May i got my 1st infection. Since, I have fallen into cycle of infection, antibiotics,4/5 weeks symptom free, infection returns. I know the min the infection is taking hold and go to docs. X2 now, I’ve been sent away, only for them to call me up after sample is sent to lab to say infection was present.
6 weeks ago I spent 3 weeks on dif antibiotics as they struggled to find 1 that worked. This has scared me.
6 weeks later, after being sent away on Friday, I have been up all night. I have taken UVA-URsi & enhimavra all weekend + D-mannose but all to no avail.
Any advice? I am considering seeking alternative therapy as feel I am getting nowhere.
Hi Linda, can you send us a direct message and let us know where you’re based? We may be able to share some useful resources. Melissa
Hi Melissa could you let me know the name of the London based consultant you saw as I live near there and need to see a specialist . Thanks
Hi Lucy, I didn’t work with this particular specialist, but Anna, whose story this is, did. The clinician she is referring to is Professor Malone-Lee and you can find more information about his clinic and other UK-based recurrent UTI specialists here. Melissa
Thank you for sharing this story. I was diagnosed with IC last year and have been on Elmiron since due to recurrent UTIs. I felt better for awhile but have recently developed them again. Antibiotics do help, but the UTIs keep coming back. I suspect an embedded infection. Please send any information you feel might help me. I am in Georgia, US. God bless you.
Hi can you tell me what professor in London did you see ?
The professor mentioned in the story is Professor Malone-Lee. You can find more information about his clinic, along with other recurrent UTI specialists in the UK, here. Melissa
Hi Linda, can you send us a direct message with more information about what steps you’ve taken and what you’d like to do next, so we know which resources may help? You also might like to read our information on chronic vs recurrent UTI, UTI testing, and UTI treatment options. Melissa
Hi could you please forward on the specialist you see in london please. would be much appreciated thankyou.
Hi Carla, I emailed you some more information. Melissa
I loved to read your very informative story, it gives hope ! I would love to have the name of the Professor in London by private message.
Many thanks, Mari
Hi Mari, I forwarded some further information to you via email. Melissa
Let’s share what has helped outside of the antibiotics with this issue. Has anyone had any success with diet changes on lessening the embedded UTI’s? I currently have all UTI and even kidney infection symptoms, yet my cultures are negative so no antibiotics are given. Do I have to wait til it’s freaking sepsis before they’ll treat me? My urine is smelly and filled with particles yet they say no infection bc no wbc, no leukocyte, no blood found in urine and the culture shows no bacteria at all. This type of urine is not IC, is it?? Help :/
Hi Jessica, we’ve shared some information on the issues with standard urine testing, and other options you can try. You might be interested in reading more. We hear many similar experiences! Melissa
I’m in california and cannot afford to travel to London. do I have any local options. please
Hi Claudia, can you send us a direct message so I can share more via email? Melissa
I have stage 3 kidney function and was on nitrofuraton nightly but brought my kidney function right down so took me off it. Would this happen when on any different ones. I’m currently on ceflexin at the moment for the 4th time from Beginning of May.
Hi Margaret, it’s best to speak with a doctor about side effects of antibiotics. We aren’t practitioners, so we can’t offer specific advice. If there are resources we can share that may be helpful, feel free to send us a direct message. Melissa
Hi, have you had any feedback from UTI sufferers who have finished the treatment given to them by the London professor? Is there any stories from those who have completed the full course/treatment?
Hello! I live in London and am experiencing awful issues to do with recurring symptoms that just do not go away. Have become immune to so many of the first line antibiotics – would be great to get some info regarding the London clinic that you went to and person you saw ? Thanks
Hi Amy, I just emailed you with more information about this. Melissa
Hi Stephanie, we have heard from some patients who have recovered on this protocol. The Chronic UTI Australia site has shared a few personal stories about this, if you’d like to read more there. Melissa
Could I get the name of this doctor in London?
Hi Sarah, if you haven’t already, can you send us a direct message so we can share more information via email? Melissa
Can I ask what long term antibiotic is the best please so I can suggest it to my GP
Hi Cheryl, there is no single antibiotic that is the right choice for every UTI. You might like to read the information we’ve shared about UTI antibiotics, and also this study, which observed the outcomes of a long term antibiotic protocol for recurrent UTI, and describes how those antibiotics were selected. You might like to share the study with your GP. Melissa
I started having UTI symptoms 1 year ago. I was given antibiotics 3 times over 6 months with temporary relief. I have had CT scans, X-Ray and finally cystoscopy 2 weeks ago. I started feeling worse 4 days after the cystoscopy (3 days of antibiotics) so I was prescribed 7 days of Augmentin. I still have burning after 4 days of the Augmentin. I am frustrated and don’t know what to do.
Hi Nanette, we hear many similar stories. If you have any questions, you can always write to us directly. We’ll help however we can. Melissa
Pleas Ms Kramer. Can you email me some info as to where i can get some additional help. Im in Florida in the US and Im so frustrated because i cannot shake this UTI. I posted a coment previously but ran out of text. Thankyou.
Hi Robert, I’ve sent you an email as requested, and we can answer any further questions that way. Melissa
I have been suffering for years with UTI symptoms. My condition has become chronic and I have been hospitalized several times and given a series of antibiotics. I recently ran a course of 3 different antibiotics for a peroid of 2 weeks. My symptoms have improved but i still have a strong odor when i discharge my bladder. It doesnt help that i have to self cath every day due to spina bifida. I am at the end of my rope with this horrible condition and i would really appreciate any info that can be given. I have had several urine tests and labs performed by various clinics and the ecoli has become undetected. At times im even experiencing air coming out of my bladder when i urinate.
Hi Robert, you may like to read our information on the issues with standard testing, and testing alternatives you could pursue. I’ve also sent you an email with more info. Melissa
Thank you for sharing your story. I am now wondering if I have embedded UTI since I’ve been having flare ups every couple of months and every time I go to the doctors , my urinalysis would show no bacteria but positive for leukocytes and nitrates. My doctor would just prescribe me abx and the pain would go away after the full course. I started to develop yeast infections that was hard to get rid of because of all the abx I’ve been on. Can you pls share your doctors informations w me . I’m located in California . Thank you
Hi Pauline, I also received your email, so I’ve replied with more information there. Melissa
Hi, I’ve just been diagnosed by Prof Malone Lee as having an embedded UTI and have been put on high dose long term antibiotics. Feeling rather nervous about it to be honest. We be interested in having a conversation with you about. Do get in contact if you so wish. thanks, Carole
Hi Carole, it’s great to hear you’ve found an approach to try. I got your email too, so I’ve sent you some more information about how to connect with others on this protocol. Melissa
Hi, I have chronic UTIs which is so frustrating and has been going on for the past few years. At present I’m on a 90 day 100 mg of trimethoprim antibiotic which is not totally successful. Getting a another cystocopy on April 6th, last one was in 2011. Have seen a few urologist and presently a second urogynecologist who has told me that I have vaginal atrophy, nocturia, besides urinary frequency and incontinence but the chronic UTIs is the major issue. This problem all began after the first urologist stretched my urethra in 2011which was wrong!! I live in New Jersey, Morris County. Does anyone know of an expert doctor?
Hi Mary, how frustrating! I can share some more info about New Jersey practitioners, if you send me a direct message so I can reply by email. Melissa
hi, this is a devastating illness. I’m seeing the professor and I feel lucky I can. I’m having a relapse at the moment and it’s hard work. Running a family and trying to keep hold of your life. I wish they would find a cure. I will take the vaccine when I’m next in the clear but I don’t know when that be. It’s very depressing and no-one understands.
I too am seeing the prof. I feel glad I can but sad I am still suffering. It’s been 2 years with him and 3 years in total. I thought I was getting there and bang a big flare. My friend Lottie has recovered with his treatment so I am hopeful . Again it took years for her x
You’re right, recurrent UTI is very frustrating and unpredictable and it can have a drastic impact on quality of life. I hope your current treatment leads to a full resolution so you can get your life back. Melissa
Im seeing Professor Malone Lee next week and never have I prayed more to be diagnosed with an infection because that would be better than living with Interstitial Cystitis my whole life. At least an infection can has a shot at being cured.
I just came upon this site. I too have IC or interstitial Cystitis like you. But I still get UTIs too. Mine are a lot! I’m thinking I could have a embedded infection as well. I know a friend who has IC and she found out she had a embedded infection and dosent even have IC. I know how you feel.
Hi Teresa, we hear many similar stories. If you have any questions you can always send us a direct message. Melissa
Hi America, best of luck for your appointment, I’m sure you will find it very informative and I hope it puts you on the path to recovery. I’d love to hear more about your experience, if you’re happy to share. You can always get in touch directly. Melissa
I cried as I read this article. It is like reading my own story. I spent years of wandering to the GP only to be sent home without treatment as tests were negative. I felt incredibly down and I spent weeks of lying under a heat pad wondering if my life was over. I am seeing a private urologist now, who has me on a three month course of antibiotics and who I know is at the end of the phone. I am starting to feel better and my life is returning back to normal. I feel that worldwide, there are so many women trapped in this awful situation. It saddens me that these forward thinking specialists are so low in number. Thank you so much for this website- it gives me hope.
Dear Hannah, Can u share more information about this private urologist? Thank you so much
Hi Hannah, I’m so happy to hear you have found a specialist who can help, and that you’re improving! I hope you make a full recovery very soon. Perhaps you can send me a message and share more information about your doctor, in case this is useful for others in your area? Melissa
I was told by a urologist last November that I had a possible embedded infection, but she didn’t take me seriously because urgency and frequency were my only symptoms and they eventually went away. They have flared up again this year, and I still have no answers. The “IC” diet does not help and pelvic floor therapy only helps minutely, so I am also convinced mine is an embedded infection. That original urologist went on maternity leave and her replacement had no idea about embedded infections. Obviously the simple GP dipstick came back negative for UTI, I have no idea what to do next but will consult your resources for sure. Im in Aus too, Brisbane specifically, and doctors have been awful here.
Hi Scarlet, sorry to hear you’re experiencing that, it can be very frustrating. I can share further information that may help you find a practitioner in Australia. If you’d like further details, you can send me a message directly. Melissa
I was just diagnosed with IC because I have UTI symptoms but according to several cultures, a cystoscopy, and an ultrasound, no infection or other abnormalities. I’m curious to know if those tests would show an embedded UTI? I have spent the past three years getting recurrent UTI’s none of which came up negative until now (even though my first visit showed levels of leukocytes and white blood cells). Im grasping at anything that tells me its not IC.
Hi Emily, standard urine culture tests have been shown to be inaccurate so you have every reason to question a negative result when you have symptoms. You can learn more about why we shouldn’t rely on a standard culture for a diagnosis here, and alternative testing methods here. There is no test that specific looks for embedded infection, but some types of testing are more sensitive than others. If you have other questions you can message me. Melissa
I have the same story, negative urine cultures, same exact symptoms and it’s debilitating every couple of months. I’m so sorry you went through all that, and I am so glad to hear I’m not alone. I was told I have IC as well, but respond to macrobid for negative cultures. Do you know of any doctors in the US?
Hi Danielle, you’re definitely not alone! I saw your email too and have sent you some more info there. Melissa
Hello, Does embedded UTI show in bladder biopsies taken in cystocsopy?
Hi Virve, we’ve heard mixed reports on this. It may be the case that an embedded infection will be identified if the biopsy was taken at the site of the infection, but missed otherwise. We’re still collecting data on how biofilms may be identified in different types of tests, and we’ll publish more information when we have it. I’m happy to discuss it further if you want to get in touch. Melissa
I too see the same Prof and have got my life back from being in 24/7 excruciating pain to being 90% better. GPs dont have NICE guidelines to treat chronic UTI or Embedded Bladder Wall infections in the UK so thousands of patients in the UK develop Embedded Bladder Wall infections with no proper treatment and part of this is due to cheap agar plates and too short of a duration UTI testing in the first place plus very short duration antibiotic treatment that helps to created bacterial immunity to the drugs we have. Proper testing in the first place with longer duration testing and longer duration antibiotic treatment is needed. If this doesnt happen there will be thousands more people who develop embedded infections that will also get written off to a life of living hell with the kind of 24/7 pain that you would get prosecuted for if you put an animal through it. This is a world wide problem that needs change and support. It can happen to anyone and yet we only have one clinic in the entire world where the Professor can diagnose and treat Embedded infections properly and effectively
Can I have contact details of professor and clinic in London please .
Hi Shahina, you can find more information about chronic UTI practitioners, including the one mentioned, on our UTI Treatment page.
Hi Val, it’s so great to hear your treatment has been successful so far! The lack of guidelines for chronic UTI is indeed a global issue, as is the limited availability of more accurate urine testing methods. We’ve covered the shortcomings of standard testing, as well as alternative testing options that are available. I’d love to hear your thoughts on those. Outside the UK, there are a handful of practitioners working on better diagnosis and treatment of chronic UTI, and we agree with you that more are very much needed. We’ll keep working to that end, sharing resources wherever we can. And we’re always happy to receive input, if you have research you’d like to send our way. Melissa
Hi Muchelle, we haven’t been able to find any studies on the use of colloidal silver for bladder symptoms. You can read more on the science behind UTI home remedies here. Melissa
My holistic dr wants me to take colloidal silver but I have kidney disease so I was worried. How long did u use it for?