Chronic Urinary Tract Infection Vs. Recurrent UTI

By Melissa Kramer

11 mins

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UTI Definitions: Let’s Clear Things Up

You’ll notice the headline here reads chronic urinary tract infection. But if you’ve read other sections of Live UTI Free, you’ll also see us refer to recurrent UTI a lot. There is a method to our UTI madness, and we’ll explain below.

While many females we have interviewed refer to their ongoing symptoms as recurrent UTI, there is a point where a recurrent UTI can become a chronic urinary tract infection.

A Defintion On Live UTI FreeA recurrent urinary tract infection is officially defined as three episodes of a UTI in the previous 12 months or two episodes within the previous 6 months.

At the moment, it is generally accepted that recurrent UTIs occur due to either reinfection or a persistent infection.

A Defintion On Live UTI FreeReinfection refers to an infection where the pathogen is eradicated by treatment, then the same or a different pathogen ascends the urinary tract to cause a new infection. We’re not going to go into this as many studies have shown this is unlikely to be the cause of most long term recurrent UTIs.
A Defintion On Live UTI FreePersistence means the pathogen that caused the UTI is not completely cleared from the bladder by treatment, remains detectable in the urine, and after treatment returns to a level that once again causes symptoms of infection. This cycle of persistence can repeat indefinitely, feeling like a new infection each time. A persistent infection is also called a chronic urinary tract infection.

More and more evidence supports the theory of persistent infection, indicating that many recurrences of UTI may actually be caused by an underlying bladder infection caused by ineffective initial treatment.

Recurrent UTIs caused by a persistent infection in the bladder are also referred to as chronic cystitis or a chronic urinary tract infection.

This concept is important, and we want to highlight here that while the terminology used for various urinary tract conditions may sound different, it could be referring to the same thing.

When we refer to recurrent UTI in this site, we mean persistent infections which are also called chronic urinary tract infections.

If your frequent UTIs are actually caused by an underlying chronic urinary tract infection, you need to pay attention here:

Whatever you’re doing to treat each occurrence of UTI is probably not working.

The fact that your UTIs keep returning should be enough evidence of this. But you may not know why chronic urinary tract infections are so hard to properly treat. Fortunately, we can explain it through super interesting science.

 

Why Do I Keep Getting UTIs?

While most uncomplicated UTIs either resolve on their own, or with a course of antibiotics, there is an increasing number of cases of chronic urinary tract infections that cause ongoing symptoms.

You get a UTI, you take the antibiotics you are given, the symptoms disappear, and everything seems normal, until you suddenly find yourself with another UTI… You take the antibiotics you are given, the symptoms disappear, and everything seems normal, until…

It may sound like a broken record, but this is the situation more and more females are finding themselves in.

A Quote On Live UTI Free About Recurrent UTIs“I’ve had recurrent UTIs for around 15 years. I take antibiotics when it gets really bad, and it seems to help, but I always get another one, and I always anticipate getting another one. I try my best to prevent it, but it seems inevitable.”

While the statistics around chronic urinary tract infections are hard to find, we do know that:

  • 26-44% of females with their first UTI will experience a second UTI within 6 months.
  • With each UTI, the risk of another UTI increases.
  • Reports say the period of recurrence is typically 1 or 2 years, before the infections cease. That is a long time to suffer from UTIs, and our research interviewees indicate that 1 to 2 years is a gross underestimation.
  • Most females who experience recurrent UTIs do so despite antibiotic treatment, and despite being otherwise healthy individuals with no anatomical abnormalities in the lower or upper urinary tracts.
  • Testing and treatment guidelines for chronic urinary tract infections are inadequate or do not exist in most parts of the world. This means even when doctors want to help, they generally don’t have the resources or guidance they need to be able to.
  • A report published by the National Institute of Health found that 74% of females diagnosed with Interstitial Cystitis had previously been diagnosed with recurrent UTIs. Interstitial Cystitis (defined below) is a painful set of urinary tract symptoms with no identified cause and no known cure.
  • 92% of the females included in the above report had also received negative test results after having their urine cultured (more on this in our testing guides).

In short, a significant number of females move through escalating stages of diagnosis as antibiotic treatment fails to cure them and testing fails to find a cause.

A Doctor Quote About Recurrent UTIs On Live UTI Free “Most UTI guidelines are aimed at management of simple uncomplicated UTI. It can be very difficult to successfully manage complex or recurrent UTI in primary care. If symptoms persist, or where there is diagnostic uncertainty GP’s will need to make a referral for specialist assessment."

Dr Jon Rees, Chair, Primary Care Urology Society, UK

We want to illustrate that because this escalation of diagnoses of chronic urinary tract conditions is not based on positive UTI test results, it relies solely on the opinion and experience of your medical practitioner.

Because there are no guidelines on managing complex or recurrent UTI, your doctor is generally not in a position to help, and should make a referral to a specialist that can.

Our research has shown this is often not the case, and a practitioner may instead decide that possible avenues for testing and treatment are exhausted. At this point, a diagnosis of Interstitial Cystitis may or may not be given, depending on the practitioner.

For females that progress from a single UTI, to recurrent UTI or chronic urinary tract infection, to a diagnosis of Interstitial Cystitis, there has historically been very little hope of effective treatment. We hope to help change this.

 

Different Types Of Chronic Urinary Tract Infection

Depending which country you are in, what your symptoms are, and which terminology your doctor is familiar with, you may have heard the following terms to describe different conditions of the urinary tract:

Chronic Urinary Tract Conditions: Different Names For The Same Family Of Problems

AcronymTermDefinition
RUTIRecurrent Urinary Tract Infection
(Specifically, persistent recurrent infections)
Three episodes of a UTI in the previous 12 months or two episodes within the previous 6 months. RUTI can be classified as a persistent infection or a reinfection.

The open nature of this definition means there is no logical end to this diagnosis. Even after twenty years of UTIs, this definition can still apply to you.
cUTIChronic Urinary Tract Infection / Chronic CystitisA persistent infection of the bladder.

As with RUTI, many females are diagnosed with chronic cystitis indefinitely
IC
PBS
BPS
Interstitial Cystitis
Painful Bladder Syndrome
Bladder Pain Syndrome
An unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes.

The American Urological Association

HBS
HSB
Hypersensitive Bladder Syndrome

Hypersensitive Bladder

An umbrella term used in East Asia to cover conditions resulting in symptoms including, bladder pain, discomfort, pressure or other unpleasant sensation,
and is associated with disorders such as a frequent need to urinate day and night
and/or an urgent need to urinate. It encompasses Bladder Pain Syndrome. International Painful Bladder Foundation

If you do a little research, you will quickly find there are also sub-categories within these  conditions, with varying symptoms and levels of injury to the urinary tract.

It is not our intention here to imply these chronic urinary tract conditions are the same, or that they affect people in the same ways, but they do have an important thing in common – in the majority of cases, no cause has been identified, and the condition is therefore not curable. Treatment focuses on reducing symptoms rather than resolving the underlying issue.

A Quote On Live UTI Free About Recurrent UTIs“After about 3.5 years of chronic urinary tract infections, two doctors said they couldn’t help me further. A third said ‘maybe you just have irritable bladder or IC.’ That ‘maybe’ didn’t feel like a diagnosis. Why did my test results tell them nothing?”

So why do we mention these chronic urinary tract conditions?

There is strong evidence that many of these individuals have been misdiagnosed with incurable conditions, when in fact they are afflicted with a chronic, embedded bladder infection that can be identified with appropriate testing, and treated effectively over time.

Let us explain…

 

What Causes Chronic Urinary Tract Infection?

This is where the science gets a little more complicated. (But fascinating too!)

We’ve talked about what causes UTIs. We also know that recurrent UTIs can be attributed to a persistent bladder infection that is not properly eradicated by treatment, and returns to a level that causes symptoms.

This underlying bladder infection can last for years in the form of a chronic urinary tract infection. For many females, this cycle of acute and symptom-free periods is never broken, and some move on to be diagnosed with the conditions mentioned above, such as Interstitial Cystitis (IC), or Painful Bladder Syndrome (PBS).

These conditions are considered to be incurable, however…

Interstitial cystitis is a diagnosis of exclusion. This means IC is diagnosed in the absence of any other obvious cause, rather than being diagnosed due to a specific set of symptoms and/or test results. This is clear in the official definition for IC above.

A diagnosis of exclusion leaves a lot of room for misdiagnosis, with many researchers now suggesting cases of misdiagnosis may be more common than many people think.

A Doctor Quote About Recurrent UTIs On Live UTI Free "...if the [dipstick] test is negative, the sensitivity is such that there is no justification for claiming you do not have an infection... if the culture is negative it is again wrong to claim this proves an absence of infection; the culture is too insensitive. For these reasons, negative tests are unhelpful and a cause of terrible suffering."

Professor Malone-Lee, Whittington Hospital, UK

And this isn’t just theoretical. Hundreds of females diagnosed with Interstitial Cystitis – that is, the absence of infection – have been able to receive better testing that has identified an infection.

With an infection identified these individuals have gained long term treatment that relieves their painful symptoms and has often lead to complete resolution of the issue.

Why has it been so difficult to detect these infections?

There is a culprit here, so let’s take a closer look. Behind the misdiagnosis of hundreds of thousands (potentially millions) of people, are embedded chronic urinary tract infections called biofilms.

A Defintion On Live UTI FreeIn the case of a chronic urinary tract infection, a biofilm is a community of bacterial cells that stick together and adhere to the bladder wall. These cells then produce a protective slime that shields the bacterial community from antibiotics and the natural defences of the body.

Chronic Urinary Tract Infection - Simplified UTI Pathway

This goopy shield makes diagnosis and treatment very difficult. And while the bacteria are contained within their shield, the body is less likely to mount a response to their presence.

When bacteria are periodically released or escape from the biofilm, the body recognises a threat and an inflammatory response is triggered, heightening symptoms of a UTI. This can be experienced as a cycle of acute symptoms, followed by periods of fewer or no symptoms.

Let’s compare the science of biofilms with the symptoms a sufferer of a chronic urinary tract infection may experience, using E.coli as an example pathogen:

 

Chronic Urinary Tract Infection - UTI Pathway Step 1
Stage OneTHE SCIENCE:
• Infection and inflammation of urinary tract caused by invasion and multiplication of bacteria or other pathogen.

HOW IT FEELS:
• UTI symptoms including burning when urinating and urgency
Chronic Urinary Tract Infection - UTI Pathway Step 2
Stage TwoTHE SCIENCE:
• Free-floating bacteria form a weak attachment to the bladder wall
Antibiotics can still be effective during this stage

HOW IT FEELS:
• Without effective treatment, UTI symptoms remain as body continues to defend against the threat
Chronic Urinary Tract Infection - UTI Pathway Step 3
Stage ThreeTHE SCIENCE:
• Bacteria form a strong attachment to the bladder wall and begin to form a biofilm encased in protective slime
• Antibiotic resistance increases, treatment becomes more difficult

HOW IT FEELS:
• Without effective treatment, UTI symptoms remain as body defends against the threat
Chronic Urinary Tract Infection - UTI Pathway Step 4
Stage FourTHE SCIENCE:
• Free-floating bacteria are flushed from bladder via treatment or natural body defenses
Biofilm remains intact

HOW IT FEELS:
• UTI symptoms decrease or disappear
Chronic Urinary Tract Infection - UTI Pathway Step 5
Stage FiveTHE SCIENCE:
• Biofilm community formation continues
• Antibiotic resistance increases as the biofilm develops

HOW IT FEELS:
• No UTI symptoms, or low level chronic symptoms
Chronic Urinary Tract Infection - UTI Pathway Step 6
Stage SixTHE SCIENCE:
• Biofilm detachment
• Bacteria escape biofilm and enter urine as free-floating bacteria

HOW IT FEELS:
• ‘Recurrence’ of UTI
• UTI symptoms including burning when urinating and urgency return
Chronic Urinary Tract Infection - UTI Pathway Step 7
Stage SevenTHE SCIENCE:
• New biofilm attachments may begin to form
• Free-floating bacteria are flushed from bladder
• Without appropriate treatment, the process repeats

HOW IT FEELS:
• A cycle of ‘recurrent’ UTI as the biofilm fluxes over time

We should also note here that biofilms can be fungal as well as bacterial, and there may be more than one pathogen present in the bladder at any given time. In fact, biofilms can be complex and diverse communities of multiple pathogens.

For the sake of simplicity, and because bacterial infections of the urinary tract are much more common than fungal, we’ll stick to bacteria for our examples. But keep in mind, what causes a chronic urinary tract infection in one person is very likely different from the next person.

Bacterial biofilms can also be found INSIDE the cells of the bladder wall, forming intracellular bacterial communities (IBC). In fact, evidence of IBCs was found in about one fifth of urine samples from females with acute uncomplicated symptomatic UTIs. Fascinated? You can find a more in depth look at how biofilms and IBCs form here.

This is not far-fetched science.

The National Institute of Health (NIH) estimates around 80% of all bacterial infections in humans involve biofilms.

Persistent recurrent UTIs, also known as chronic urinary tract infections, are examples of UTIs where the bacteria has formed a biofilm or embedded itself in the bladder wall to form an IBC.

Research has also shown that a high percentage of females with Interstitial Cystitis may in fact have biofilms, IBCs, or both within their bladder, and that this is the cause of their ongoing infection and recurrent symptoms.

A Quote On Live UTI Free About Recurrent UTIs“I get a UTI every month or so. In between each really bad UTI I would feel mostly better, but I’d often have sensations like another UTI was coming on. I was continually drinking water to try and prevent it, but, like clockwork, my symptoms would suddenly get much worse and I’d end up with another full blown UTI.”

We hear many people refer to this as a cycle of ‘flare ups’ or ‘episodes,’ implying they believe it to be a continuous, chronic issue with both acute and symptom-free phases. Evidence shows they are probably right.

For those who suffer from a chronic urinary tract infection, the symptoms and ongoing pain can be debilitating, dramatically and adversely affecting their daily lives, as well as their overall mental and physical health.

Although the existence of biofilms in human infection has been accepted in medicine for decades, it is much more recently that attention has turned to their involvement in chronic UTI.

Traditionally, testing labs have focused on culturing and testing free-floating pathogens. If free-floating pathogens are identified, their susceptibility to antibiotics is also tested while they are in a free-floating state.

Once the susceptibility has been tested, it is possible to prescribe the right treatment.

The problem with these types of tests is that they do not specifically look for evidence of biofilm formations in the bladder. And therefore, they are also not a mechanism for testing which treatments may be effective against a biofilm-forming community of microbes.

To really figure out how to treat a chronic urinary tract infection caused by a biofilm or intracellular bacterial communities (IBCs), it would be necessary to test different treatments on the biofilm or IBC, rather than on free-floating, easy-to-target pathogens.

Some advancements in testing have been made. Researchers have been able to pinpoint indicators of biofilms and IBCs in the bladder, such as filamentous bacteria and exfoliated IBCs.

This sounds complicated, but all it really means is bacteria that have taken on an elongated and/or branched shape as part of a bacterial community, and cells that have been shed from the bladder lining. Both are signs of an embedded bladder infection.

Unfortunately, this area requires a lot more research, and tests to specifically identify an embedded chronic urinary tract infection are not available to the general public.

Treatment protocols for biofilms do exist, however, specialists who can administer these therapies are few and far between. And this type of treatment requires regular monitoring to evaluate any improvement in the embedded infection.

You can read more about the issues with UTI testing, and how to find better testing in the next sections.

We hope the information in this site can shed some light on the topic, and guide you towards a resolution.

 

When To See A Doctor For A Chronic Urinary Tract Infection

If you’ve had a UTI previously, you are in a much better position to recognize the symptoms, and you may feel confident in what action to take.

You may even be able to take this action at the first sign of a UTI, and prevent the symptoms from escalating. This doesn’t necessarily mean you have cleared the infection. If you’ve read the fascinating tale above about chronic urinary tract infection and biofilms, you’ve probably realized that by now.

For females with a chronic urinary tract infection, it’s not just about treating isolated symptoms, it’s about breaking the cycle and eradicating the underlying cause.

The ideal scenario wouldn’t involve a UTI at all, we get that. But once you’re on that rollercoaster, you really need to find a way off safely. This is what the ride should look like…

Symptoms → Test → Results → Diagnosis → Treatment → Cure

Chronic Urinary Tract Infection - Simplified Journey of a UTI

Anyone who has experienced a chronic urinary tract infection can tell you this isn’t always how it pans out.

Instead, for many females, parts of the sequence are missing, and a cure has been out of reach. There are a number of reasons for this, which we’ve covered in the next sections, so read on!

Getting tested and getting an answer as to what is causing your UTI is your best bet to finding a permanent solution.

If you have had more than 2 UTIs in the last 6 months, or more than 3 UTIs in the last 12 months, it’s highly recommended that you get tested.

If you are uncomfortable taking antibiotics without knowing what exactly you are treating, you should get tested.

If you have recurrent UTIs and you have never been tested, you should get tested.

And the best way to get tested is to see a doctor. Finding the right doctor, however, can also be tough. But first things first.

Now that we’ve convinced you to pursue testing, we have some heavy information to lay on you…

Getting accurate testing for UTIs is extremely difficult.

So next we’ll share some frustrating facts on why this is, before providing a few tips on how to get better UTI testing. It’s always best to arm yourself with information before embarking on a journey towards better health.

 

Share your questions and comments below, or get in touch with our team.

 

 

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Comments

Diane says:

My mother has had chronic uti for the past 4 years. She has seen so many doctors but no help. It seems antibiotics are not working anymore. Where can we find a specialist that deals with chronic uti in the Tampa bay area of Florida?

Hi Diane, are you able to send us a direct message, so I can share further information via email? Melissa

Kelley Weld says:

How do I know if I’m seeing the right practitioner? I have an appointment with a urologist but don’t want to continue being treated unsuccessfully with antibiotics. Is there a list of recommended providers in the Maryland / DC Metro area?

Hi Kelley, there’s no specific criteria for finding the right practitioner, a lot of it comes down to personal preference – whether you feel as though you are being listened to, and how confident you are they can help. I can share a few names in the area you mentioned, if you send me a direct message. We don’t publish names on our site as we don’t recommend specific practitioners. We collect information from other recurrent UTI sufferers who have found someone helpful, then pass them on if requested. Melissa

Maria Bustillos says:

I have had reoccuring UTIs for the past 7 years. They would get tested and come back positive I would be given antibiotics and the problem would go away. They would come back I would get tested it would come back negative yet the symptoms remain.I read the article and I did not see any answer as to how to detect and get rid of them. I’m in the comment section because I just finished reading the article. it is stated in so many different places that there are no real answers yet as to how to get rid of them.Are there any doctors that have knowledge of this in either Washington State or California or possibly Montana, where I reside?

Hi Maria, at the moment we don’t know of any chronic UTI specialists in Montana. There are a few who offer telemedicine if you’re interested in this option. We may be able to share some useful information regarding Washington State and California. If you’d like further details, you can send us a direct message. Melissa

Angie says:

I have been suffering with these since March, and each time I stop the antibiotic they come back. I am getting fevers and chills when they come back that are even more miserable and seem to be worse each time. I’m seeing a Cleveland Clinic doctor soon, they are supposed to be #1 in Urology so I’m hopeful they can help?? Any idea if they do this type of testing?

Hi Angie, the type of testing used tends to vary by doctor as well as clinic, so we’re unable to shed any light on this. If you have any other questions, feel free to reach out directly. Melissa

Tammi says:

I have experienced 5 UTI “like” symptoms since December last year. 3 times the UA came back positive & treated with antibiotics. The last 2 the UA came back negative but I was prescribed antibiotics and the symptoms went away. I live in Roseville, CA but currently on vacation in Sheridan MT & will return home this Saturday. Trying essential oils in water & Tylenol to the lessen the symptoms to get me home.

Hi Tammi, as you may have read, negative UTI test results are not uncommon. Standard testing is significantly inaccurate. If you’re after more information about specialists in CA, or any other resources, you can send us a message. All the best for your travels in the meantime. Melissa

Madison Faulkner says:

I have been getting a UTI for what seems almost every 2-3 months, and I really have no clue what is causing it. I have been tested for STD’s and I drink plenty of water.

Hi Madison, you might like to read more about UTI testing, and recurrent UTI treatment. This could shed some light on what you’re experiencing. If you have any questions, you can always get in touch directly. Melissa

Faith Spalding says:

I have had chronic uti for more than 50 years with very little relief. I now have a severe case of Pancytopenia. As you can imagine I have had most antibiotics known to man. Could the Pancytopenia be related to the chronic infection? I am currently receiving two to three blood transfusions per week. Help!

Hi Faith, that’s a very interesting question, and one I would love to know the answer to as well. It’s probably best asked of a recurrent UTI specialist. If you’d like some suggestions on how to find one, feel free to send me a direct message, with more information on where you’re located. Melissa

Debra Ouellette says:

Hi Melissa,

I have had a persistent Ecoli UTI for a year now..I an currently resistent to all but two oral medications and neither of those get rid of this infection. Is there anyone in Connecticut?

Hi Debra, can you send me a direct message so I can share more info that may help you find a practitioner? Melissa

Sharon Vincent says:

I have been having recurring bladder infections for over 2 years. I am on my third urologist, one moved out of state. Is having a serious impact on my quality of life and my ability to work. I’m afraid to drink before traveling to work or before leaving to go home. How do I find a specialist I live near New York City please help.

Hi Sharon, at the moment we don’t have any specialists on our list that are based in NYC, however, I can share some info via email that may help you find one nearby. Can you send me a direct message if you’d like me to send further details? Melissa

Tracy says:

Sounds like my issue. Can you recommend a doctor in north Jersey?

Hi Tracy, I can share some more info via email, that may help you find a doctor in Jersey. Are you able to send me a direct message with a little more information? Melissa

Margo Cooke says:

Count me in. Is there anyone in Ontario Canada that specializes in this. Seen two different urologists with two completely different treatments. Neither treatment permanent.

Hi Margo, at the moment we don’t have any practitioners on our list who are based in Canada. We’re working on it. There are a few based in the US that offer telemedicine if you’re interested in that option. If you’d like further details, you can send me a direct message. Melissa

Dominique says:

I just finished Bactrim (after switching from Macrobid) for my UTI and was fine for a day and symptoms are slowly creeping back. It’ll be two weeks soon. How should I proceed? Waiting on culture results.

Hi Dominique, it’s always best to discuss returning symptoms with your doctor. If you feel they are unable to help you further, it may be best to look for a practitioner who can. I can share further information via email, if you send me a direct message. Melissa

Gibran Locati says:

I have read quite a bit of the information on this site. If i am understanding what i have read correctly the information is saying that if my urine culture comes back negative that doesn’t necessarily mean i dont have a UTI? I havethe symptoms and i know what it feels like and my when they do they urine dip test etc it always shows i have a UTI but cultures come back negative.

Hi Gibran, that is correct. Standard urine cultures have been shown to be very inaccurate. We have an article about this topic specifically, if you’d like to read it. Many people who reach out to us have received negative culture results despite their symptoms, so you are not alone in that. Melissa

Karen King says:

I’ve had 12 uti’s in 8 months and my friend told me I may have bladder cancer as the thing happened to her

Hi Karen, many people experience multiple UTIs in the space of months and have no identified physical abnormalities, but it’s always best to speak with your doctor about recurrent UTI, to rule out other causes such as this. If there’s anything we can help with, you can message us directly and we’ll get back to you asap. Melissa

Mary says:

I have been searching for a specialist who can treat chronic uti’s. I am in northern Indiana. Can you suggest someone, please.

Hi Mary, I saw you sent us a direct message too, so I’ve replied to that with some further information. Melissa

Doreen says:

I have had the same experience as the last poster and would like to ask the same questions! Chronic uti specialist and biofilm locations

Hi Doreen, are you able to send me a direct message with more info on where you’re based and any other specific questions you have? Melissa

Elise says:

I have been dealing with the same infection for over six months and I’m starting to become resistant to abx. Where do I find a chronic UTI specialist?? Or someone that works with biofilms?

Hi Elise, sorry to hear about that. Can you send me a message directly with more info on where you are based so I can check whether we have any relevant info for you? Melissa

Gift says:

I have been having chronic UTI for 3years now,at first I went for test but nothing was found, doctor gave m injections and some drugs then but now it came back,I have taking so many antibiotics, it keep on appearing and disappearing, frequent urinating and pains while urinating pls what do I do? I need ur help

Hi Gift, if you haven’t already, you may like to read more about why your test results may be negative despite your symptoms. If you’re considering seeing a chronic UTI specialist, you can send me a message and let me know where you’re based. Then I can share further information that may help. Melissa

Jane Reesor says:

I have suffered for 4 yrs with uti every month. Not always the same bacteria. Had cysto..ct etc. Can you have biofilm if the bacteria is different each time? Does a bladder wash that the dr performs help? I need something!

Hi Jane, biofilms are very likely to contain multiple types of bacteria – both good and bad – so it is possible a biofilm is involved when test results return different microorganisms. I’m not sure what type of bladder was you’re referring to. You can send me message directly with more info if you like. Melissa

Maria Abruzzese says:

16 years ago I suffered constantly with uti, urine came back negative for infection I was put on antibiotics but symptoms returned. I went private and had a urethral dilation nothing for 15 years. 2 weeks ago it came back, went to my GP they put me on a course but symptoms were still there throughout so went back was put on a different course but same thing!! Do you think I need another urethral dilation? They say the operation is performed because the urethra has experienced trauma. When I was 11 I was misdiagnosed an ovarian cyst, it grow rapidly to the size of a football sat on my bladder so I peed myself. When I had it removed it had crushed one half of my Fallopian tubes and ovaries but never had a uti until 11 years later so what do you think? I live in the uk and I’m 38.

Hi Maria, can you send me a direct message with more info about whether you’ve had testing that has identified the cause of your recent symptoms? I can also share more info about getting treatment in the UK. Melissa

Helen says:

I’ve had uti’s in the past for a couple years not but since March they have been really bad. My gynecologist tested my urine and told me I have biofilms and has been treating me for the uti but it’s exhausting. I went 3 months straight on different antibiotics and it messed up my stomach so i’ve taken a break. My symptoms have flared up again so i’m Thinking about getting tested again. However, I’m wondering if maybe I should see a urologist instead? Any suggestions would be greatly appreciated!

Hi Helen, a urologist may not be the best option – it depends whether they have experience (and an interest) in recurrent and chronic UTI. If you like, you can send me a direct message and let me know where you’re based. I may be able to share more information about chronic UTI specialists you can access. Melissa

Mindy says:

I have been having Chronic UTI’s for 40 years. Crazy sounding, I know, but I simply bounced from Urologist to another, to Infectious Disease Doc to another Urologist. I now have Chronic Kidney Disease as a result of the years of infections. Each month I have about 1 week symptom free. The rest are different stages of the UTI. I take a 2 week course of antibiotics to lessen the symptoms. I now believe the bacteria are embedded in my bladder wall (thanks to this and other websites). I live in the U.S. and doctors look at me like I’m crazy when I bring up this research. Any treatment resources in the U.S. would be so helpful. I’m losing hope that I will ever be well.

Hi Mindy, it doesn’t sound crazy to me. I have spoken with many people who have suffered from recurrent or chronic UTI for decades. You’re not alone in that! Can you send me a direct message so I can share more info about specialists that may be helpful? Melissa

Randi Muhlena says:

I’m 28 years old I’ve been getting uti’s for 10 years but since I’ve been married they’ve been non stop, in the last year I’ve been hospitalized 2 times for Kinney infections in the ICU. I’ve been to several dr’s none of which can tell me what’s going on just more antibiotics. I’m sooooooo tired of being sick! I have just found out that my fulopian tubes are blocked and I just want to have a baby :’ ( The dr. Wants to do exploratory surgery to see what’s going on inside. I would just love answers and to be healthy again so I could get pregnant!!

Hi Randi, sorry to hear you’re experiencing that. Can you send me a message with more info about where you’re based? I may be able to share some useful resources. Melissa

Dolly C Carnine says:

Everything you have written is exactly what I have experienced since April 2018 and before.(my first UTI occurred 10 years ago) It has been on going, from one doctor to the next.
Although the last doctor prescribed some addition meds.
I still have a UTI .

Hi Dolly, the problem is far too common. So many people share similar experiences. Hopefully you’re able to find a resolution to your symptoms soon. Melissa

Amber says:

I’m 23 and I’ve been getting UTIs for years I get them some years once a month other times it’ll be every 2 months I think the longest I’ve gone without UTI within the last 5 years is 6 months MAX! I can’t afford a urologist so have to go to the ER for antibiotics just to get me over ! And I hate taking antibiotics bc they come along with yeast infection

Hi Amber, you’re not alone in that experience, and it can be very frustrating! If there are any particular resources you’re looking for, you can send me a message directly and I’ll share anything I can. Melissa

Brandy says:

Hi! Im 35 years old and I started having UTI’s when I was 20. I would get them back to back for months then nothing and that cycle continued until I started having babies. My first pregnancy I had gotten a kidney with no prior signs of a UTI. 3 more pregnancies go by with no issues. Im no longer having babies and low and behold they rear their ugly heads again! I’ve heard 3 UTI’s since March! Grrr. I finally have a referral to an oncologist (I think that’s the right word) and I really want any info that can help me on this journey to figuring this all out. I would felt appreciate any and all info, so I can go loaded with info. Also a side note, I have not been referred to a specific doctor yet. Thank you!

Hi Brandy, sorry for the delayed response. There are a couple of resources you may like to share with your doctor – I can email these to you if you send me a message. I may also be able to provide some info on chronic UTI specialists if you’re still looking. Melissa

Sheila Burns says:

HI! I am 54 and have had UTI’s most of my adult life. I found the information on biofilm fascinating and affirming of what I have experienced. Is there a practitioner in Maryland who might be helpful. Also..is seeking care from a urologist recommended. Thank you!

Hi Sheila, most urologists specialize in complicated UTI and surgery, and are not experts in chronic UTI. Regardless of the type of practitioner you seek out, it’s always best to do some research into whether they have experience diagnosing and treating chronic UTI. I can send you some more info by email if you get in touch here. Melissa

Marina says:

Hi! I’m 20 years old and had my first UTI less than a month ago. I got it treated, but now I’m having symptoms of another one already! I’m nervous I’m going to be getting them all the time now. I don’t have the money to be treating them every month!

Hi Marina, it’s possible the treatment was insufficient or incorrect, and it’s always best to return to your doctor to discuss your options. We also have some info on recurrent UTI treatment approaches that may be helpful. If you have specific questions, you can reach us directly here. Melissa

Addy says:

Hi! I am 22 years old, and have been suffering from symptoms of a UTI for a year. After my first UTI, I was put on antibiotics, which helped. 6 months later, I got another UTI and was put on more antibiotics. This round of antibiotics helped but then led me to what appeared to be a yeast infection. I was in pain, and discomfort, and it wasn’t until I took Diflucan that my symptoms cleared slightly. Since then, some days are good, and others are bad. Usually 24 hours after having sex it will hurt to pee and my urine will have a foul smell. I experience a lingering burning sensation, or random urge to pee when I don’t have to. I try to flush my symptoms out of my system, but no one seems to be able to properly diagnose me, and I just want to find some relief.

Hi Addy, most practitioners do not specialize in chronic UTI and are unable to help. If you’re interested in discussing your options with practitioners who do diagnose and treat chronic UTI, you can send me a message and let me know where you’re located. I may be able to share useful information. Melissa

Cy says:

Hi I have been reading the comments left by others and can relate to all of them , I have suffered for years with reoccurring problems . Mine seems to get bad and then go away for awhile only to come back again. Have seen many dr. Over the years . It seem to be under control for awhile now is back on a regular cycle .

Hi Cyndi, if there are any particular resources you’d like – studies, practitioners etc, feel free to send us a message directly and we’ll share what we can. Melissa

Eileen Howard says:

I’ve been suffering with constant uti with years and no one seems can help me I had the camera in my bladder didn’t show anything ..blood and infection show up all the on the dip sticks in Dr surgery but she sends them away to grow but it doesn’t grow anything ..I am sick with a lot of them with temp and end up in bed ..I not able to plan anything in case I get sick ..even work is suffering ..the antibiotic helps but doesn’t take it away can anybody help me ..I’ve tried everything

Hi Eileen, I can understand your frustration. An explanation for your negative urine culture tests could be contained in our article about why that happens more than it should (there’s a good chance the test is just wrong). If you’d like to send me a direct message and let me know where you’re based, I may be able to share details of chronic UTI experts that might be helpful. Melissa

Tina says:

Hi
I’ve always had UTI’s here and there my entire life, but I know to do my best to flush my system and the symptoms will go away on their own.

A month and a half ago I started taking Topamax as an anti-seizure medication and I have had UTI symptoms pretty much non-stop since then. Once I think I’ve kicked the issue, the symptoms return with a vengeance. When I brought this up to my neurologist, she told me to take antibiotics to get rid of the infection since my records show I’m susceptible to UTI’s… I feel helpless and like that’s not the answer, as I’m not a huge fan of taking antibiotics.

Is it possible I’m not crazy and the medication is somehow to blame for this?? I’m currently weighing my options to rid the issue.

Thanks in advance for any advice.

Hi Tina, we hear from a number of people whose symptoms change (for better or worse) with different medications but it’s impossible to comment on any specific one. If you like, you can send me a message with more info about your experience and perhaps I can share some useful resources about different approaches. Melissa

Ursula says:

Hi
I’m 71 have repeated Kidney infections for the last 3 years.
Every 2 months.taking long term antibiotic still get infections.
Can anybody help
Thanks

I feel so upset and down now
I’ve seen urologist and GP

Hi Ursula, sorry to hear you’re experiencing that, you’re definitely not alone. Are you able to send me direct message and let me know where you’re located so I can share further resources? Melissa

Mary G. says:

Hi there. I’m a 52 year old female and am on my 4th UTI in 7 months. Prior to this, I had only one UTI in my life. I recently saw a Urologist who performed a Cystoscopy and said everything looked fine with my bladder but is sending me for a scan on my kidneys. He did mention that some women do experience an increase in UTIs at Menopause so I’m not sure if that’s the culprit. I’m concerned about constantly having to take antibiotics and don’t know how much longer I can deal with the pain and burning. 🙁 Any suggestions on next steps? Thank you!

Hi Mary, I can send you some studies about the increased risk of UTI after menopause, and the ways that treatment may differ, if you’d like to read them. If so, you can send me a direct message so I can share via email. Melissa

Gena Rinberger says:

Hello I am a 35 yr old female and have always had uti’s but here in the last year they have gotten worse. It seems like everytime after intercourse I seem to get symptoms or a full blown uti if I dont take Uristat to calm my bladder. I seem to get them every week and have symptoms every week and some weeks more severe than others. I drink mostly Gatorade and just a little bit of sweet tea. I flush my system as best as I can when I feel symptoms coming on and sometimes it seems to work other times it does not and I have to go and get antibiotics but they will give me antibiotics before they truly know if it is positive or negative. Most of the time they are negative and they can’t tell me why.
Any suggestions that might help?

Hi Gena, we have some information on why tests can be negative despite your symptoms, and other types of testing you can try. If you have any questions about these, feel free to contact me. Melissa

noorani says:

hi im 25 years old ive been struggling with recurring infections for two years , my gp has tried all kinds of antibiotics they dont always work , iv been to a gynae that told me i have mild pcos and that i should lay off the antibiotics , but every month after my period i start getting a yellow discharge with bad lower back and dont know what to do

Hi Noorani, can you get in touch with a little more info so I can share resources that might be useful? Melissa

Cheyanne says:

Hi I’m 22 years old and for years I’ve had utis back to back. I get one then go to the er in so much pain. I’d finish my antibiotics and I’ll be okay for a few days then I’ll get another one. Some doctors are shocked when I’ve came in and had one so bad that they couldn’t believe I wasn’t feverish…. I just have birth 3 months ago and during the whole pregnancy Ive only haved 1 but now it’s starting again. This is definitely not what I want to deal with for the rest of my life. Having them every week or 2 will drive someone crazy. Doctors can’t seem to figure it out. Everything looks normal to them

Hi Cheyanne, you’re not alone in this experience. So many people have ended up in a cycle of chronic UTI, many of them because of inaccurate testing. You may need to pursue alternatives such as advanced testing, or working with a chronic UTI specialist. I saw you sent me an email so I’ll send more info there. Melissa

Dolly Carnine says:

I can relate to what everyone has written.
I can’t remember how long I have had this problem?? More than TEN years for sure.!!!
What can we do?
I’m ready to fight!! This is awful that so many women have been suffering.
Keep me posted. God help us!!
Sincerely, Dolly Carnine

Hi Dolly, it certainly takes a lot of fight to advocate for yourself and find answers! I saw you emailed me, so I’ve replied with some more info there. Melissa

Andi says:

hi there, I’m a 32 year old female. When I met my husband 5 years ago, I started getting UTI’s more frequently. I went to a few urologists and they recommended taking an antibiotic every time we had sex. I wasn’t super comfortable with it, but just wanted the cycle to stop. And it did help! But overall, I didn’t like that I was taking antibiotics so frequently, so I stopped. Since December, I have had (pretty much) non stop issues. Sometimes, full blown painful UTI’s, but mostly small amounts of discomfort here and there. At the beginning of the year I had a cystoscopy, and the doctor said everything looked normal anatomically and inside my bladder. I really don’t want to keep turning to antibiotics.

Hi Andi, we have some info on why the use of prophylactic antibiotics is questionable, so you’re not alone in your concern there. We’re working on some new content about UTIs related to sex, but in the meantime, if you send me a message I can share more there. You also might like to read more about advanced testing and treatment. Melissa

Angela says:

Does Uqora help? I have heard good things about this product?

Hi Angela, we don’t recommend specific products on our site. For any product, it’s best to research the individual ingredients, and look to see if the product has been tested in any studies before making a decision whether to try it. If it helps, we have some information about popular home remedies, with links to studies where they are available. Melissa

Lauren P. says:

Hello! I am a 31 y/o female. I’ve suffered from chronic UTI since 2011. It has taken such a huge toll on my quality of life. I’ve started a regimen of probiotics, regular d-mannose intake, and NAC daily. Regarding the NAC – it appears that this potentially makes UTI symptoms worse before they get better. I am accurate in saying/thinking that? I’ve noticed over the past 2 weeks since the NAC kicked in that the symptoms pop up every 2 days or so. This is without having sex or doing anything else that typically causes me to have symptoms. I am hoping the d-mannose helps to pull all of the broken bacteria out… but just curious if the NAC breaking down the biofilms could be causing me to have the recurring symptoms every few days right now. Thoughts? Any help is greatly appreciated!

Hi Lauren, although biofilm dissolvers are becoming more widely used, there are still no studies that look at whether they reach the bladder or are effective there. Anecdotal evidence from other users suggests that they can cause flare ups of symptoms, but we can’t confirm one way or another until those studies are done! D-mannose has only been shown to have any effect on E. coli, so whether it works may depend on what’s causing your infection. You can send me a message directly if you have other questions. Melissa

Aisling says:

Hi, I’m 34 years old and have been dealing with chronic UTIs for as long I can remember. I’ve tried everything that’s been recommended. I pee before and after intercourse, only shower, only cotton underwear, loose clothes, cranberry supplements daily, probiotics daily, no caffeine, tons of water. You name it, I’ve tried it. I still get utis at least once a month. My dr has me taking an antibiotic before and after sex and it doesn’t help at all. I’ve seen a urologist but got no real answers. What should my next step be? I’m so tired of the constant pain and irritation.

Hi Aisling, this is very similar to stories we hear from so many people. It seems that you can have perfect hygiene and still get UTIs. In fact, people who do experience UTIs tend to be those that are trying hardest to do everything ‘right’. It’s possible you have a chronic infection, as per the above article. You may want to try alternative testing methods, or finding a practitioner who has experience treating chronic UTI (most don’t). You can get in touch directly if you have questions. Melissa

Rebecca says:

Good evening.
My 73 year old mother-in-law was diagnosed with a UTI around Christmas/New Years that resulted in a bad response to Cipro, a hospitalization, 10 days in a nursing home, becoming septic & spending another 2 weeks in the hospital on 6! antibiotics because they couldn’t determine what infection she had, a month of c-diff while in a nursing home with a catheter.
6 months later she is home, without a catheter. She started having UTI symptoms shortly after the removal of her catheter, & for the last 10-11 weeks has had a consistent UTI. The Dr’s prescribe yet another antibiotic, and the urologist has suggested d-mannose, drinking 1/2 her body weight in water & cranberry juice, Azo.
Any suggestions, or people we could turn to? Thank you.

Hi Rebecca, that sounds awful. Can you send me a message with more info about where your mother is based so I can share more detail? Melissa

Angie says:

I have been having an ongoing issue with UTI’s for a year and now I was given 30 days of antibiotics and was told to take before or after sex…I can clearly say this has NOTHING to do with it. I have been staying to myself and so NOW I have no idea what to do and I have a urologist.

Hi Angie, prophylactic antibiotics seems to be a common recommendation, though their use is questionable. We have some more info about that on our site. If you have any questions, you can always send me a message. Melissa

Arie says:

I have, what we believe, is a biofilm of a super bug. I’ve now had 14 positive cultures since a surgery last year. No prior history. It was 12 weeks before my initial infection was treatment, due to the UA being negative and surgery being to blame for my symptoms at the time. Within a week of treatment, symtoms return. Always same bacteria. I am looking for help (I have infectious disease and urologist) but I want a cure. I have tried Infectious disease with Mayo Clinic, specialists in my area who have written articles on it, and no one has any insight. Please, please, if you know of that small list of people you mentioned, email me. I’m running of antibiotics to take and becoming resistant. Thanks.

Hi Arie, I’ll send you an email with a couple of questions, then I can share more info. Melissa

Richard says:

Our 82 yr. old friend is in ongoing agony with this. She’s seen several different doctors in N. metro Atlanta area. Last urologist said she’d done all she could do, nothing more except go back to her gen’l practitioner. Friend has had these for 60 years, but the last 6 months have become unbearable. What can we or she do to help? Isn’t there some sort of super antibotic? She’s had bladder ablasion, 12 bladder “cocktails” treatment. Problem keeps reoccurring. What’s next?

Hi Richard, sorry to hear about that. Most practitioners do not have experience successfully treating chronic UTI, so it can be difficult to find the right person to help. You may like to reach out to one of the practitioners on our site for more information. I’ll also reply to the email you sent, with more info. Melissa

Mary says:

My daughter has had recurrent UTIs on and off since she was seven. She is 15 now, and has had 3 UTS since January. They treated her with powerful antibiotics and she got C-Diff. She has the UTI back and now they gave her a shot of antibiotics instead of oral. We go back to find out if that took care of it next week. What options does she have now that she contracted C-Diff. Do you know anyone else who may have gone through this?

Hi Mary, sorry to hear about that. I have spoken to a number of people who have experienced C. diff as a result of antibiotic use for UTI. If you want to message me directly I can pass on some information that has been shared with me. Melissa

Ekaterina Zharkova says:

Hi Melissa

I also would like to know what’s
the best way for a local lab/medical practitioner to test for bladder lining biofilms, if the urine culture is negative.

Please send me an email with the resources.

Stacey Clark says:

Hi Melissa I have reaccuring symptoms that give negative test results time and time again there always seems to be a trace of blood but no actual infection I too what like more info on how to go about getting further testing for what you talked about in this article. I am beyond grateful to have found this article I am in pain as we speak and don’t even want to go to the doctor as know it will be another bottle of antibiotics that help for a short time. Please help. Thank you

Hi Stacey, we hear so many stories about negative test results despite symptoms. If you haven’t read our article on why that can happen, that is a good place to start, and we have more information about alternative testing methods here. Depending where you’re based, you also may want to reach out to one of the chronic UTI specialists listed on our site. Good luck, Melissa

Hi Ekaterina, I’ll send you an with more email, as requested. Melissa

SHIRLEY PEPYS says:

What is the proper preventative antibiotic and milligrams for Chronic UTI for an elderly woman with Type 2 Diabetes?

Hi Shirley, that’s something that should be discussed with a doctor. We have some information on antibiotics for UTI on our site, and if you have other questions, you can always send us a message directly. Melissa

Linda says:

Hi, I’ve got my first UTI last year (2017 Feb) and I’ve got my second UTI in the next 6 months. I never had the habit of drinking enough water since I was young. The first GP I visited told me that lacking of water is the main reason that caused me UTI, I never get better from the first prescription of antibiotics so I went to a specialist, and the urologist told me that my UTI could be due to me being sexually active. I have stopped myself from sexual activity but I’ve got my third UTI at the time being because I never had enough water supply for the past few days. Is there anything I could do to recover completely from UTI as I am really afraid that one day my body will get immune to all the antibiotics which are meant to cure UTI.

Hi Linda, sex is a factor for many people but it’s certainly not the only thing that causes UTIs. We have some more info about recurrent UTI treatment options that includes the approaches of some chronic UTI specialists, if you’d like to check it out. With regard to antibiotic resistance, it’s certain bacteria that can become resistant to certain antibiotics rather than our own bodies becoming resistant. There is some research that suggests that these antibiotic resistant bacteria can lose their resistance over time when they are not exposed to the antibiotic, so resistance may not be a long term state. You can get in touch if you’d like more info about anything! Melissa

Traci says:

I am a 53 year old female. I have had a couple of UTIs before, but one of the problems is I do not usually have the burning that lets you know this so I may be walking around with one more of the time. Instead I get pain in the area of my bladder, but since I have multiple gastrointestinal issues it is hard to tell the difference, Currently my situation is that red and white blood cells plus mucous and other things are turning up positive, but I have no bacteria present. They want me to start Cipro in case it is an infection, but I am prone to CDIFF so am concerned to take it if there is no bacteria. Any help would be appreciated.

Hi Traci, what you described is very similar to many stories we hear. Negative urine culture results despite symptoms and other indicators of infection (blood, pus etc) is extremely common. If you want to read more about why that can happen, you can do so here. We also have some content on treatment options for recurrent and chronic UTI, as well info on chronic UTI practitioners. If you have specific questions, you can get in touch directly. Melissa

Frederica Claiborne says:

Hi Melissa. My mom is 89 and has been having chronic/recurring bladder infections for years now. Her urologist just keeps giving her antibiotics and sometimes pain meds. A few times he did a procedure on her. She described it as “stretching her bladder”. She has type 2 diabetes and takes the usual meds for that. The urologist suggested that they look at the meds she is on. Her GP says no issue with her meds causing the problem. Is it worth it to try some natural remedies? D-mannose or laricidin. crushed garlic, etc..? Any other suggestions?

Hi Frederica, that sounds very frustrating. We have some information about D-mannose and other home remedies, if you haven’t already read it. You can also reach me via our contact form if you’d like more specific info about anything. Melissa

Jamie Ashburn says:

Wonderful site has helped my doctor conclude that I likely have a biofilm but he does not know how to treat it. Its now called RUTI. Took a sample into the lab that looked cloudy to me(could not see through the yellow urine).. The labs AutoUrinalysis said everything was negative and that my urine was yellow and clear. I don’t now if the urine was disposed of after that but I still have symptoms and the preventive antibiotic seems to not be working again. I’m also confused most of the time.We are moving to the Chapel Hill NC area by the end of June..My present doctor referred me to his teacher at Duke medical school. there. He;stumped. I need to get to the point where I can function while we move. My family won’t even let me drive the 8 hours yet! Any ideas?

Hi Jamie, at the moment there are very few doctors who have experience in successfully diagnosing and treating chronic or recurrent UTI. You may like to reach out to those listed on our site – some provide appointments via telephone if you are unable to travel. You may also like to read more about preventative antibiotics and why they aren’t necessarily the best course of action. Drop me an email if you need more info. Melissa

Sherry G says:

I am a 70 yr old woman who is experiencing 2 infections a month. Until last fall I had 3-4 UTIs a yr. In November, I had one that progressed into sepsis. I cannot take estrogen replacement therapy because of a history of breast cancer. I have become resistant to all common antibiotic pills except Macrobid. Cranberry does not work. Methenamine Hippurate does not work.I have seen 2 urologists and they are out of ideas. I cannot go on like this as soon I will resistant to the Macrobid.
Any ideas would be appreciated.

Hi Sherry, it would be great to chat more about this, I’ve heard many similar stories. The best way to reach me is via our contact form – I’ll email you back asap. Melissa

Steph K says:

I am a 54 year old female and have been dx with at least 2 UTI’S in the last 6 months. I know when I have one because urine has a foul odor and appears foggy. I just ended a cycle of antibiotics…3 pills for $90 as insurance didn’t pay. I know I have another one because sxs have returned. I work full time where most of day is spent in the community with limited access to restrooms. As I’m aging, I find the need to urinate is more frequent and because of limited access to restrooms, could this be causing reinfection. Also, has there ever been reports of being able to go on SSDI due to the condition?

Hi Steph, I’m not aware whether it’s possible to access SSDI due to chronic UTI. I suspect it isn’t, though many people report an inability to work because of ongoing infection and the associated pain and frequency. Chronic UTI practitioners tend to take a longer term approach to treatment, and you may like to speak with one of the practitioners we’ve listed on our site. This page also includes more information on recurrent UTI treatment options. I hope this helps, and you can always get in touch directly if you have other questions. Melissa

Kai H says:

I am a 19 year old that just recently started getting reoccurring UTI’s just at the beginning of this year. And it is driving me to the point of insanity. I’ve had three full blown ones over the last five months and I’ve finally convinced my parents to let me see a urologist. I’ve taken all the precautions (like everything) to prevent them and they still have me feeling like im going crazy. Being away at college has had set backs because the doctors didn’t believe me the second time It came back and then forced me to get STD tested in order to receive antibiotics I did and I was clear of course knowing I would be and they are still coming back. Currently sitting here typing with frustration as having to deal with my third.

Hi Kai, I can sympathise with your frustration! It would be great to hear more about your experience so I can share any useful resources. This is the best way to get in touch. I hope you find the urologist helpful. Melissa

LT says:

I have had many, many UTIs after having a hysterectomy during which my ureter was cut.Spent about 3-4 years having bouts of UTIs.Had multiple stints put in to keep the repaired ureter open.Eventually had the ureter re-implanted and bladder moved over to make it accessible. Had the hyster due to estrogen receptive breast cancer. Had 3-4 UTIs since November and 2 of those within the last month. Currently on an antibiotic and still feel some burning when urinate but not every day. Should finish this round of treatment in 2 more days but afraid this is not over since still having pain. Have reflux from the injured ureter. Sexual activity is certain infection. Saw urologist in November. Did a cystoscope everything fine. When any urine test done ALWAYS have blood in urine. Help!

Sorry to hear you’re experiencing that! I’d love to hear more via private message, so I can share further resources. You may also like to speak with one of the chronic UTI practitioners listed on our site, for advice on the best approach. Melissa

Steve says:

I am a male who is suffering from recurrent UTIs with 2 hospitalization for sepsis. I have been on multiple antibiotics that just hold it at bay until it becomes full blow. I am in a constant state of sickness, no energy, unable to get back to baseline. My urine cultures grow gram negative rods with isolated bacteria of EColi. I’ve ungone every test in the book to find the source without success. Bactrium cause nephrotoxicty, Keflex only holds it for a while, Ciprio no good. Thoughts?

Hi Steve, that’s a tough situation. Can you get in touch with me directly via our contact form so I can send you some more resources? Melissa

JC says:

I am under the care of the Professor Malone-Lee quoted in this article. I’ve suffered with persistent symptoms for four years, and the Professor diagnosed what he believes to be an IBC caused infection. The treatment is long and dogged, I have been seeing him for a year thus far. I hope to see results soon as it truly is a life altering condition, which few understand and thus leaves sufferers anxious and isolated. Stay strong ladies!

Hi Crystal, thanks for sharing your experience and your optimism. Life altering is indeed a good way to describe chronic UTI. I hope you see results very soon and I’d love to hear about your progress. Melissa

Lucille says:

Doctors always seem to blame the patient for poor hygiene or not emptying the bladder prior to sexual intercourse—most women know what to do and do it but UTI’s persist!! It’s time for women to be tested effectively and new treatments to be employed. Billons of dollars are spent annually to treatment UTI’s that return quickly especially when women are sexually active. We have suffered long enough with this horrid affliction—researchers must be charged with finding safe, effective and affordable solutions NOW.

Hi Lucille, it’s true, you can have ‘perfect’ hygiene and still suffer from chronic UTIs. We agree that guidelines must be updated to reflect the inadequacy of current standard UTI testing methods, and much more research is required to provide more effective testing and treatment options. We know there are practitioners and researchers working on this, and we’ll continue to share new information as it becomes available. If you have any resources to share, please get in touch!

LK says:

Thanks for this great website. I was diagnosed with IC/BPS 4 years ago through a cystoscopy. I have strongly suspected an imbedded bacterial infection as I had recurrent UTI’s for about a year before it became full blown pain and sometimes frequency, completely changing my life. Your website explains things in very understandable terms. I love websites like this that offer scientific reasons, rather than forums that make me feel depressed. I truly believe the issue of UTI’s and IC/BPS is gaining traction in the medical world offering hope to people that suffer these life altering symptoms

Thanks for the great feedback. We’ve heard a lot of similar stories from people with recurrent UTIs that were later diagnosed as IC/BPS. We hope more people can find answers through more accurate testing and further research, and we’ll do what we can to help. Keep in touch with your own updates!

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