At just 21, Emma failed to fully respond to a course of antibiotics for a UTI.  Once her treatment was finished, her symptoms returned.  Negative tests eventually led her to being diagnosed with an incurable urinary condition ‘interstitial cystitis’, years of daily pain and the devastating loss of  her baby boy at 21 weeks’ gestation.   Through the support of a grief counsellor, Emma gained the courage to advocate for her own health and she started to question her diagnosis.  Now believing she had been misdiagnosed a decade ago, she urged her doctors to consider the possibility she could be suffering a chronic, embedded urinary tract infection (UTI).  After further research, her doctors agreed and began treating her infection.  Within months, her symptoms started to ease and she was pregnant again!   Emma shares her bittersweet chronic UTI story here with the sincere hope it helps others like her.

It began with a UTI and a misdiagnosis

I remember when I was like any other ‘normal’ 21-year-old. I was at university completing my bachelor’s degree, working part-time and having fun with my friends. One morning I woke up and my life was never the same again.

I had all the textbook symptoms of a urinary tract infection (UTI); excruciating pain with urination, voiding and never feeling like I could fully empty my bladder. I went to my General Practitioner (GP) and was given the typical UTI treatment, only for my symptoms to return after the full course of antibiotics was completed. I then had many urine cultures and most of the results came back negative to bacteria. This became a constant pattern over the next two years until I pushed my GP to refer me to a urologist.

The urologist believed I did not have an infection and diagnosed me with interstitial cystitis (IC). The diagnosis came after having a cystoscopy with hydro-dilatation which showed inflammation in my trigone area and ‘bumpy tissue’. Later I found out the ‘bumpy tissue’ can be quite normal. IC is a chronic inflammatory bladder condition with no known cure. I was sent away with no medications, no support and told to investigate managing my stress—or what I like to call it ‘I was told it was all in my head’.

For 10 years I suffered daily pain, a multitude of band-aid therapies and then tragedy

For the next 10 years I was in chronic pain every day. I worked with a gynaecologist to help manage my symptoms with hormones as my pain was often worse during different stages of my cycle. I was placed on antispasmodics, pain medications, anti-inflammatories and told to follow the IC diet. All the medications did have their place and gave relief to me, but I could never trust my body to behave when I needed it to the most. I feel all these treatments were a band-aid therapy more than a cure or a long-term treatment. I saw a pelvic floor specialist and she was fantastic! I was taught to relax my muscles which is a technique I still use today. I found myself at the emergency department many times and I wonder now why I didn’t push for more help then. But at the time, I was so scared if I pushed I would be left unsupported and branded a ‘pain medication seeker’.

In 2017 hubby and I decided to start a family. I was extremely nervous to be in chronic pain during my pregnancy and the thought of being in so much pain when our baby was born made me extremely anxious. We got pregnant very quickly, but a couple of weeks into my pregnancy I experienced heavy bleeding. I was eventually diagnosed with placenta previa which is a condition where the placenta is low lying and covers the cervix. I was hospitalised due to the heavy bleeding and the baby’s amniotic fluid being incredibly low. I became very sick in hospital and I was treated for an infection in my uterus via IV antibiotics. Unfortunately, the inflammation from the infection had already set in and I went into premature labour at 21 weeks. Our baby boy was stillborn, we called him Eli.

My personal tragedy fuelled my recovery 

The emotions I experienced are hard to describe, but what happened next was driven from the sadness and anger I felt. Working with a grief physiologist helped me to become strong enough to do what I needed to do to become my own advocate for my health. Tests revealed I had a high CRP level (a blood test that shows infection or inflammation in the body).  The most likely explanation was I had an undiagnosed infection which caused inflammation that ruptured the membrane around our baby boy, forcing my body into premature labour. However, the test results did not reveal what bacteria was present.

I wasn’t getting anywhere with my current GP who I had been seeing since I was a baby, so I decided to find a new GP and start fresh. I had been watching a live IC Support Group session with Jill Osborne on Facebook and she was talking about next generation DNA sequencing to look for urinary bacteria. I asked her a few questions and she provided the information I required to take to my new GP to discuss having the test sent to me in Australia. My obstetrician and GP supported me having the testing, so I ordered it from America, and it was sent to me in Tasmania.

The DNA analysis tests* identify thousands of different pathogens that are often missed with standard urine culture tests used in clinical labs to diagnose UTIs.  My results showed I had an overgrowth of good bacteria, a very resistant Escherichia coli (E. coli), high level of Mycoplasma and an Enterococcus infection. Now, some doctors in Australia will tell you that ‘everyone will show Mycoplasma when tested for it’.  But because of my decade-long urinary symptoms, the loss of our baby boy due to infection and tests showing my body was continuing to fight some type of infection, if there was bacteria in my bladder that I could treat, I wanted that treatment—regardless of what was classified as ‘normal’.

My wonderful doctors listened and agreed to help treat my chronic UTI

Reluctant to repeat the same routine of short-term courses of antibiotics which only gave me temporary relief, I found another support group for people suffering from chronic UTI in Australia and New Zealand on Facebook. They were discussing a professor based in the United Kingdom who had developed a protocol using long-term, full dose antibiotics to treat patients with chronic, embedded UTI. There were information sheets available and I took them to my GP and obstetrician to discuss contacting the professor directly to work with him and to be placed on his protocol.

Professor James Malone-Lee is an Emeritus Professor of Medicine at the University College London, who believes embedded infections are the cause of most cases of chronic lower urinary tract symptoms (LUTS). Standard urine culture tests are known through research to leave 80 percent of these infections undetected. The Professor runs a specialist UTI clinic in London and diagnoses chronic UTIs based on symptoms and looking at cells in a fresh, unspun urine sample. His treatment of an extended course of antibiotics ensures the embedded infection is cleared from the shedding layers of the bladder wall.

I took the information to my GP and she contacted Professor Malone-Lee who was only too happy to give her a copy of his protocol to follow and gave his advice for my treatment. Using the next generation DNA sequencing results and Professor Malone-Lee’s treatment protocol, my GP worked out the correct antibiotics for me to start with. It was a combination of two antibiotics as the infections I had weren’t sensitive to the same antibiotic. I was so surprised at how quickly my pain and frequency improved. Within a few months I had more pain free days than ever before. I became pregnant within a few months of my treatment and was placed on safe antibiotics during my pregnancy. My obstetrician and GP monitored my CRP levels and supported me at every stage of my pregnancy. In May 2019 I gave birth to our healthy baby girl, Florence.

My life today is transformed

Today, I am still on my treatment while I am breastfeeding and I am reducing my antibiotics over the next year. I am mostly symptom free and I have stopped all pain medications. My treatment was put together from a combination of the DNA sequencing test results and Professor Malone-Lee’s chronic UTI treatment protocol. If you asked Professor Malone-Lee, he isn’t keen on DNA sequencing testing for chronic UTI, but I felt this was the correct approach for me.

My best advice is, if you aren’t happy with the care you are receiving from your doctor, please find a new one who will listen to you and work with you. I wasted so much time, money and put my trust into doctors who weren’t up to date with knowledge of the significant failures of standard UTI tests, or the newer tests and treatments for people like me with a chronic, embedded UTI. I saw many specialists and doctors who were patronising and this left me misdiagnosed and in daily pain for over a decade.  Through the sad loss of our baby boy Eli, I paid the ultimate price for accepting the pain I was in was my ‘new normal’.

If this sounds like you, keep pushing, keep reading and keep researching, as the knowledge you will gain is your biggest tool moving forward with your recovery.

What has been important in my recovery

My grief psychologist—who gave me the confidence, strength and courage to advocate for my own health.

My pelvic floor specialist—who gave me techniques to relax tight and painful pelvic muscles caused by the chronic infection (I still use these techniques today).

The chronic UTI community—online peer-to-peer support which provided valuable information, understanding and support.

MicroGen DX DNA testing—which identified urinary bacteria that standard culture tests failed to find, leading to my doctors believing me.

Professor James Malone-Lee—who shared his chronic UTI treatment protocol with my doctors and generously answered their questions along the way.

A supportive GP and obstetrician—who really paid attention to my symptoms, treated me with respect, listened to the information I brought to them and went out of their way to treat my infection outside standard treatment guidelines for UTI.  Standard guidelines doctors use to diagnose and treat UTIs had already failed me and left me living in pain for 10 years and caused me and my husband terrible sadness and grief.

*There is no consensus in the scientific community on the value of DNA-based molecular testing in diagnosing chronic UTI.  Some UTI research experts are critical due to the current lack of understanding of the urinary microbiome and the inability to conclusively identify and describe the microbes responsible for health and disease.   We do accept that people improve under the care of practitioners who employ DNA testing to help guide treatment.   Therefore, it may be best used by experienced practitioners in conjunction with the patient’s history, symptoms and other tests.  As part of your own research into treatment options, please ask for evidence that a practitioner has experience and success using this approach and the cost involved in repeat testing.   In Australia, anecdotal reports so far show difficulties for people finding practitioners who understand the test results, and more importantly, have specialist knowledge in treating chronic UTI.  The repeat testing some treatment protocols require could be considered cost-prohibitive by many.  Although it is still early days, it is hoped that DNA-based  molecular testing will one day allow the identification of a personalised healthy urinary microbiome and inform future treatment options for UTI.  You can read more about UTI testing here.  To read our 2018 interview with US research scientist Evann Hilt from Loyola University,  please click here.  

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.

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Dr Nicky Thomas is a Senior Research Fellow at University of South Australia and The Basil Hetzel Institute for Translational Health Research, where he works on developing nanomedicines to treat infections that have become resistant to traditional antimicrobial therapies.   Among other concerning and challenging chronic bacterial infections, Dr Thomas’ team has an interest in improving the delivery and efficacy of antibiotics in people suffering chronic urinary  tract infections (UTI).

Dr Thomas started his career as a community and hospital pharmacist working in Germany and Switzerland.  During this time he became increasingly concerned with people returning for repeat antibiotic prescriptions for infections, particularly recurrent urinary tract infections (UTIs). He retrained in biomedical research so he could work on developing novel therapies to tackle resistant infections and ‘super bugs’. While completing his PhD in New Zealand, he worked on a project improving the effects of anti-malaria medicine.

Dr Thomas joined University of South Australia in 2013 and soon became fully involved in researching bacterial biofilm and resistant infections. In 2017, Dr Thomas founded the Adelaide Biofilm Test Facility at the School of Pharmacy and Medical Sciences at University South Australia, Adelaide. He is now dedicated to finding new treatments that use less antibiotics to get people healthy, including a specific focus on chronic UTI.

Image supplied by Dr Nicky Thomas

Dr Thomas, can you tell us a little about yourself? 

I am trained pharmacist with several years of experience in community pharmacies, hospital and industry. Following my PhD in Pharmaceutical Sciences, I have focused on bacterial infections, in particular those that are associated with chronic infections that are extremely difficult to treat with antibiotics, such as bone infections and UTI.

Apart from my passion for science and providing solutions for real-world problems, I enjoy home brewing (maybe because this also involves microorganism, but much nicer ones).

Can you please explain what your current research is about?

My group uses nanotechnology to make better medicines. Nanotechnology means we make super-tiny containers one billionth of a meter in size which we load with antibiotics.  What we see is that bacteria often respond much better to those containers compared to conventional antibiotics. Together with our colleagues in the hospital, we have tested a few technologies with much better patient outcomes—meaning patients get healthy faster, and with less antibiotics.

While we originally focused on sinus infections and slimy biofilms, we have now broadened our scope. Our PhD students have recently developed smart nanocarriers that can: 1) sense and respond to an infection; and 2) penetrate through thick bacterial slime and also penetrate human cells that are infected with bacteria. These conditions are typically found in UTI. While these are ongoing projects, we are confident that some of our technologies have the potential to be game changers.

What is your primary research goal? 

Tackling real world problems—finding new strategies against antibiotic resistant infections that otherwise kill millions of people every year.

What do you need to further your research? 

Funding, funding, funding.  Governments seem to ignore that research is a pillar for a healthy society that will benefit all. Unfortunately, these effects take time and hence, research is often one of the first areas where funding is cut. It is extremely frustrating when you have a potential game changer as a new therapy and you cannot proceed with the research because there is no money in the pot.

We also need collaboration with clinicians. It is a great experience when people with the same goal meet and try to fix a global problem. We already work with surgeons but would like to expand our collaborations to include UTI clinicians. These experts might be able to assist with disease models that we can use to further fine-tune our technology.

Did I mention funding?

Contact details

If you are an Australian or international UTI clinician or researcher interested in chronic UTI and would like to know more, please contact Dr Nicky Thomas.

If you would like to inquire about helping fund this important work, please contact The Institute.

If you want to know more about Dr Nicky Thomas’ work, you can look at the following links:

University of South Australia, Nanostructure and Drug Delivery

Basil Hetzel Institute for Translational Health Research

Adelaide Biofilm Test Facility

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use

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Carrie had only ever had a urinary tract infection (UTI) once before.  When she was 40, her second UTI refused to budge and her life soon became a revolving door of doctors and ER visits.  Suffering terrible bladder and urethral pain and becoming increasingly unwell, she battled to hold herself together and manage her day-to-day life with three small children.   Carrie knew her original infection had never fully cleared and it had become an infection like no other.  She researched until came across a different form of testing and a doctor in the United States who was prepared to see past the negative culture tests and treat her for a chronic, embedded UTI.   She is now close to being symptom-free and is back to living life as a happy, busy wife and mother.  Read how Carrie fought her way back to good health.

My UTI nightmare began when I was 40

My nightmare started on April 5, 2019.  I was 40 years old.  I had been on my menstrual cycle and had a leak as I was out and about picking up my pre-school aged kids from school.  I had a pack of baby wipes in my purse and used those to clean myself up until I could get home to shower.  About 48 hours later, my hell began.  I had developed the worst UTI of my life.  There was something evil in those wipes.  I didn’t have frequency or urgency… but I did have HORRIFIC bladder and urethra pain.  I had burning in both my bladder and urethra.  It felt like a knife was lodged in my bladder.

Unlike many sufferers of chronic UTIs, I had only ever had one other UTI in my adult life, six years prior.  I had used a hot tub at a resort in a mountain town in Colorado and I believe my infection came from there.  Regardless, it cleared after two rounds of short-course, full-dose antibiotics.  Interestingly enough, I didn’t have a positive culture after the first course of antibiotics failed…but the second course (Ciprofloxacin taken for five days) eliminated the infection.  I was clear and free from any issues until six years later.  Even throughout my four pregnancies I never had any UTI issues at all.  I was seriously blindsided by what happened with this current infection.

At the very first sign of my UTI, I called a home health team to come and do a home visit because my husband was travelling out of town.  I have three very small children (all under the age of five) and I didn’t want to drag them all to my OBGYN or to my Primary Care.  The home health nurse practitioner was very nice but just prescribed an antibiotic and didn’t even culture my urine.  This was a big mistake!  I wish I could have had that first urine cultured!  However, she assured me that most of these infections are caused by E. Coli and that it should be all clear in the next five days.  She was VERY, VERY WRONG.

My life had become a revolving door of doctors and ER visits

What took place next was a tale spin of revolving doctors and ER visits as I tried to figure out why I wasn’t getting better.  To my horror, all of my urine cultures were coming back negative.  I never had urgency or frequency, I just had DEBILITATING PAIN.  I had burning and stabbing pain in my bladder and it felt like something was eating away at my urethra.  It was horrific!!!

After three rounds of antibiotics (and about three weeks into my nightmare), my OBGYN referred me to a urologist stating that she was concerned I had developed interstitial cystitis (IC). Instinctively, I knew this wasn’t the case.  The symptoms that I felt never cleared from the initial infection that occurred after a known incident with the wipes.  I was experiencing the exact same pain from when it all started.  I KNEW I still had the original infection!  I had zero doubts about it regardless of what my doctors were telling me at the time. I spent 10 years as both a pharmaceutical and medical device surgical sales rep, so I wasn’t medically ignorant.  And due to my work history, I was very comfortable questioning and challenging doctors.

I had an infection trapped in my bladder! 

It was about this time that I started searching the internet for UTIs that were culture negative.  It was during this 30-minute search that I came across the Live UTI Free website and learned about embedded infections.  I KNEW I had discovered what was wrong with me!  I was appalled and angry to learn in my very brief search that up to 60 percent of the standard urine tests that are done routinely in doctors’ offices are falsely negative.  I can’t wrap my mind around how these tests are still being used as a standard of care in managing women’s health.  This, to me, seems unacceptable.

Immediately, I called MicrogenDX and ordered a urine DNA test kit* to be sent to me overnight so I could get my urologist to use it at my next appointment.  My urologist was willing to try the DNA testing.  We did the first test and it came back with three pathogens.  I had never been so excited to get such news because I was so glad to prove what I knew to be true.  I had an infection trapped in my bladder!  My urologist selected a recommended antibiotic from the report and gave me a short course of full dose antibiotics, the same treatment for an acute UTI.  I did a 48-hour washout (a short antibiotic and supplement free period to get everything out of your system) after finishing the antibiotics and retested again.  This next test showed entirely NEW pathogens.  I was shocked!  I asked my urologist how this could be, and her simple answer was that I must have re-infected myself!  I immediately questioned the urologist’s hypothesis as I had just been on antibiotics and the pathogens shown on the second DNA report showed susceptibility to the previous antibiotics I had just been on!  She said that she had no other explanation….

I went home and researched these infections again and discovered BIOFILMS.  I did one more DNA test with this urologist and she didn’t even call me back to treat me with the NEW pathogens that had popped up.  She refused to believe the reports at this point and refused to give me antibiotics.  Instead, she wanted to prescribe me over-active bladder medication and start going down the IC diagnosis route.  I refused both.  I did not have an over-active bladder or IC at all.  I had pain due to an infection, which was proven with DNA reports.  It was at this point that I knew I needed to find a different doctor, and that my urologist was going to be a dead end for me.

I discovered a functional medicine doctor who consulted with Ruth Kriz on how best to treat me

All during this time, I was in TERRIBLE pain.  It was very hard to function but I pushed through for my kids.  It was the most challenging thing I can remember dealing with and I was in the worst pain of my entire life.  I rated my pain to be 8/10 on most days.  Even while on antibiotics, I didn’t get much relief.  In fact, some of them made me feel WORSE.  This was a very confusing time for me and I had to really tune in to my body in order to understand what was happening.

I did a lot of researching during this time and discovered Team Inspire, Vancouver UTI Girl, Professor Malone-Lee, Ruth Kriz and the Embedded UTI Support/Advice Facebook group.  It was through these places, along with the Live UTI Free website, that I learned about embedded infections and biofilms.  I started to learn that treating these infections required biofilm busters.  It also became clear to me that pain would be part of the healing process.  I learned that when the antibiotics were working, the body usually produces a reaction to the bacteria dying which causes inflammation and more pain.  Pain being present during treatment was showing that the medication was working!  Learning about the nature of these embedded infections and treatment was a game changer for me.  This helped me to fight and embrace the pain, in order to clear out many layers of biofilm infection.

About two months after my infection started, I transferred all of my care over to a functional medicine doctor.  She was very willing to work with me using the DNA tests.  It was also during this time that I discovered Ruth Kriz.  Ruth had officially retired by this time and wasn’t taking any new patients.  However, she graciously offered to consult with my functional medicine doctor regarding my care and she did so without any charge at all.  Her consultation to my physician was one of the most generous and caring acts that I have ever experienced in my life!  I will forever be grateful to Ruth Kriz for her incredible generosity.

Ruth mentioned her protocol of DNA testing, treating with antibiotics for a minimum of 14 days and then retesting again after at least 48 hours off antibiotics.  This is known as TEST/TREAT/REPEAT.  She said she believed in long-term, full-dose antibiotic therapy, but only AFTER all biofilms have been broken up.  She said when she saw back-to-back DNA reports with DIFFERENT pathogens, that signified a biofilm is present.   Based on her treatment protocol, when a biofilm is present, long-term, full-dose antibiotics won’t work because the pathogens keep changing and the antibiotics chosen may not cover the new pathogen breaking through the biofilm.   That is why she uses the TEST/TREAT/REPEAT protocol.

Conversely, when she saw back-to-back DNA reports with the SAME pathogens, this signified a persistent UTI and usually the CORE of the infection.  The core is reached after all layers of the biofilm are broken through.  It is when the core is reached, that using long-term, full-dose antibiotics is necessary to really eliminate the persisting pathogens.  Ruth also mentioned testing for certain genetic markers, vitamin deficiencies (such as vitamin D), viruses, Lyme’s disease, mold or other issues (such as having breast implants), in order to see if there was a reason the body couldn’t clear infections easily.  Ruth also recommended biofilm busters.  This was very helpful in my healing.

Other approaches that helped support the treatment for my embedded UTI

After my consult with Ruth, I got busy.  I tested for anything and everything she recommended!  Everything came back CLEAR except for low vitamin D and the fact that I had breast implants.  In disbelief of a connection, I researched breast implants and bladder issues.  To my shock, there were hundreds of women who had developed tremendous bladder issues while having implants.  Once many of these women removed their implants, their bladder issues usually completely resolved within three months.  This finding was enough for me to schedule the removal of my breast implants and they were removed about six months into my infection.

I also started using Interfase Plus.  A woman on Team Inspire mentioned how she had cured herself using Interfase Plus in conjunction with her antibiotic therapy.  She warned that it was a painful process but encouraged me to push through the pain because I would come out the other side much better off.  I took the Interfase Plus on an empty stomach 30 minutes before my antibiotic.  Initially, I started with just one pill twice a day.  After two days, I increased to two pills twice a day.  Then again after another day, I increased to two pills three times a day.  The maximum dose anyone should take is two pills four times a day.  I couldn’t bring myself to take the maximum dose because I was in tremendous pain at the three times a day level.

Treating with a biofilm buster confirmed that I actually did have a biofilm!  I could almost feel them bursting open!  Much like the pain of a pimple popping.  It was sharp and fast and then it would be over.  I had one moment where I was putting shoes on my children in our laundry room and I had a “POP” feeling in my urethra that almost brought me to my knees!  I literally cried it hurt so badly.  However, once that pop happened, I have NEVER had urethral pain again.  It was COMPLETELY gone in that area.  In fact, I noticed the pain I felt in different parts of my bladder and urethra during the biofilms “pop”, never came back in those places EVER again.  I started to embrace the pain and I quickly realised the only way out of this hell was to fight through the pain.

In working with my functional medicine doctor, we also tried holistic approaches.  I did IV ozone therapy and spent thousands of dollars on several 10-pass treatments.  I believe these treatments helped my immune system but didn’t really touch the infection in my bladder.  Additionally, I did IV vitamins and even tried bladder instils from a compounding pharmacy that Ruth recommended.  However, after 16 days of instilling Vancomycin and Amikacin twice a day through a catheter, my bacterial load remained unchanged and I even picked up a new pathogen.  While I do believe the direct deliverance of EDTA (a biofilm buster) to my bladder did help break through biofilms, I quickly learned that bladder instils were not for me.  These were very disheartening treatments.

About five months in, I came to a place where I felt like I was spinning my wheels.  My overall bacterial load had come down.  I was feeling about 50 percent better than I had in the beginning, but I was still very much in pain.  I was doing the test/treat/repeat method over and over.  I had about seven back-to-back DNA tests that showed DIFFERENT pathogens on each report, which represented the fact that I still had biofilms present.  However, around five months I started to get back-to-back reports that showed the SAME persistent pathogens sticking around:  E. Coli, K. Pneumonia, E. Faecalis and L. Gasseri.  I couldn’t shake these, and they kept coming back on my tests.  I remembered what Ruth had said and knew that I had hit my core.

I learnt about a urologist in the US who was experienced treating chronic, embedded UTIs

It was around this time that I became an avid follower of Professor Malone-Lee in London and I joined a very active online support group called the Embedded UTI Support/Advice group, which had many members being treated using a treatment protocol based on research studies from the UCL Chronic UTI Research Group.  I was intrigued by the concept of needing long-term, full-dose antibiotics.  I bought a microscope and a hemocytometer counting chamber Professor Malone-Lee’s treatment protocol used and I learned how to do the white blood cell and epithelial cell counts.  This was so affirming to me!  This added tool gave me a feeling of greater control over my infection because I could actively monitor how my body was responding to my medication.  I also correlated my flares to an increase in counts.  All of this contributed greatly to my understanding of how to fight these infections.

However, I was in a bind because I wanted to travel to see Professor Malone-Lee for treatment.  But, travelling to London from Texas in the United States would have cost me $6,000 for travel alone.  Additionally, I have three small kids that can’t be without their mother for that long of a trip.  I was truly stuck because I didn’t know how I was going to get to see the Professor.  Out of desperation, I actually spoke with his office and attempted to book an appointment for a few months out because I knew I would find a way to see him if I was still struggling.

I clung to God during this time and prayed for a miracle and for guidance.  God delivered my miracle in the form of Dr Stewart Bundrick!  One day while skimming posts in the Embedded UTI Support/Advice group, I saw a doctor from the US commenting on treating these types of infections.  I was so excited to see that he not only believed in chronic, embedded UTIs, but that he was confident in treating them using a very similar protocol to the London professor.  I immediately booked an appointment with him.  He was six hours away from me, so it was a much easier travel prospect.

Carrie with Dr Bundrick (photo supplied)

At my appointment with Dr Bundrick, I was incredibly impressed with his approach.  He actually took time to listen to my story and symptoms.  It was clear that he cared about me as his patient.  He didn’t seem shocked by any part of my story and expressed frustration for me as I had ping-ponged back and forth between many doctors before arriving to him.  He didn’t rush me and tried to learn all my symptoms and issues.

What impressed me most about my hero, Dr Bundrick, was his response to all that I shared with him.  He was incredibly confident.  He reassured me that he had been treating these urinary infections for 25 years and has had many successes in overcoming them.  He mentioned he used to be one of the “bad” guys who only resorted to surgeries and procedures for the management of his patients.  He claimed that is the way doctors are trained in their speciality and that most urologists are primarily surgeons.  Dr Bundrick mentioned it wasn’t until he had several patients not respond to the standard procedures that he started to try new things.  It was during this time that he learned more about how long-term, full-dose antibiotic therapy was highly successful in eradicating these chronic UTIs.  Dr Bundrick is very similar to Professor Malone-Lee, in that he believes many people diagnosed with IC actually have very treatable, embedded bladder infections!

Also, Dr Bundrick was an early adopter of DNA urine testing.  He was one of the first to use them and has a great track record in working with the reports.  He placed me on two antibiotics based on my latest DNA and told me very straightforwardly to not come off of the medication for any reason unless he gave me the go ahead.  He said that we wouldn’t do another test for about six months unless I experienced a worsening of symptoms or new/different symptoms that persisted longer than a few weeks.  He set the expectation that flares would happen, but they would get less and less over time, and that the intensity of the flare would also lessen.

My recovery was coming along in leaps and bounds

It took about three weeks on his protocol and literally I woke up one day and was PAIN free.  I had ZERO pain!  I felt NORMAL for the first time in practically six months.  I was overjoyed!  For anyone reading this in the US, please book an appointment with the amazing Dr Bundrick, in Bossier City, Louisiana.  He will change your life.  He is an amazing man and not only is he brilliant; he is incredibly compassionate to the suffering that his patients are enduring. He is my life’s greatest blessing and I will forever be grateful to him because he gave my family ME back.  Being a patient of Dr Bundrick and following his guidance is what I believe brought me to my current state of 99 percent symptom free.

My pain free period lasted with ZERO pain for about eight weeks. During this time, I utilised something called the NDM protocol.  A group of other suffers in an online support group brought this protocol to my attention and I do believe it helped my healing.   Look into it at https://www.ncbi.nlm.nih.gov/pubmed/28882961.  I took D-Mannose (500 mg), NAC (100 mg) and Noni Juice (0.5 ounce) (from Amazon) twice a day.

Around nine weeks into my protocol, I did have a small flare (three on a pain scale of 1-10) and I did a 36-hour washout period of my medications so I could take another DNA test to see what was going on.  The results of the test blew me away!  ALL of my bacteria, except for L. Gasseri, were GONE.  I had never eradicated my core pathogens since this started. For the first time since all of this started, after working with Dr Bundrick and following his guidance, my test results came back fairly clear.

Now, there is a lot of controversy over the Lactobacillus species.  Some feel they aren’t pathogenic, whereas others say that they become pathogenic at detected amounts on the DNA test.  I personally believe they do become pathogenic due to my own experience with them.  I did have an increase in white blood cell and epithelial cell counts during my last small flare.  I believe it was the L. Gasseri acting up that was flaring me.  I haven’t treated that pathogen yet and I plan on adding an antibiotic that may be able to target it in the near future.  However, after my small flare that lasted for about a week, I went back to being completely PAIN free.  I had ZERO symptoms.

I just removed my breast implants about a month ago.  So, it is still too early to tell if that has impacted my bladder healing in any way.  I did need to have a Foley catheter during the four-hour surgery, so I will do another DNA test in the near future to ensure that I didn’t pick up any new bacteria from the catheter.  However, I am currently completely symptom free and have very low white blood cell and epithelial cell counts.

I am still on long-term, full-dose dual antibiotic therapy and will be for three to four more months at least.  Most likely I will stay on this therapy for a year, just to be safe.  I am traumatised by this nightmare infection and want to be sure I never have it come back.  If staying on medication a little longer gives that extra coverage of prevention, I plan on doing so.  Regardless, I am LIVING life again!  I am ME again!  I am the mother that I want to be again and the wife who can have sex again. I can drink Starbucks (not everyday because coffee was my worst offender, so I am afraid to push it—but I have a coffee about every other day); eat spaghetti, pizza, salsa, chocolate and anything I want!  I am not hindered in any way other than having to take medication twice a day.  This small annoyance is well worth the freedom it provides my life!

My gratitude goes to the following people who have been instrumental to my healing during this turbulent journey

• Dr Bundrick  = A BIG THANK YOU
• Ruth Kriz
• Professor Malone Lee
• Melissa Kramer (Live UTI Free)
• Lexi Fei (Vancouver UTI Girl)
• Joanne Mckinlay (Embedded UTI Support/Advice Facebook Group)
• Jessica Price (Chronic UTI Resources and Support – US Based Facebook Group)
• Kat Crowson (Chronic UTI Resources and Support – US Based Facebook Group)
• Imelda Wilde (microscope guru/Chronic UTI Australia Incorporated)
• Andrea RS (Chronic UTI Australia Incorporated)
• The many fellow members of the online groups that have encouraged me and shared their helpful tips along the way!  I love you all and pray for your healing
• My Heavenly Father for comforting me during the darkest times and guiding me to people who could help me!

Some websites and resources I have used along the way to learn how to navigate these infections

• Live UTI Free
• Facebook support groups:
  • Embedded UTI Support/Advice
  • Chronic UTI Resources and Support – US based
• Twitter: follow Professor Malone-Lee
• Chronic UTI Australia Incorporated
• Vancouver UTI Girl blog
• Team Inspire – IC support group

Here is a summary of what I have found to be important when fighting my infection

• It takes long-term, full-dose antibiotics to eradicate these chronic, embedded bladder infections. Unfortunately, in my experience and observation of others, natural and herbal treatments alone won’t work.  Many have wasted months trying the natural route without success, only to eventually join the long-term, full-dose antibiotic bandwagon.  Don’t waste your days suffering unnecessarily.

• Use probiotics but don’t take Lacto Gasseri or Lacto Iners. These tend to be more virulent and opportunistic towards becoming pathogens.  Also, if you see Lacto species showing up on your DNA reports, then AVOID those strains in your probiotics.  Lacto species should not be at detectible levels in your bladder.  These need to be addressed if you have them as they can become pathogenic at such levels and definitely can cause bladder symptoms.  I highly recommend Florastor daily with antibiotic use, in addition to a good all-around, adult, multi-strain probiotic without the above-mentioned strains.

• Take a Diflucan weekly or every two weeks while on long-term antibiotics, as long as your antibiotic doesn’t interact with it. This will help keep yeast at bay.

• These infections hurt as you are treating them. Symptoms can get worse in the beginning of treatment, especially when using biofilm busters.  But the pain is productive pain! Experiencing an increase in pain/symptoms while on a biofilm buster is a GOOD thing!  Embrace that pain and hang on.  Know that you will be likely getting better!  The pain is a sign that the bacteria are dying, and the biofilms are busting open.  These things need to happen in order to be cured.  Push through the pain and know it will let up.  After every round of biofilm busters and antibiotics, my overall baseline pain score lowered.  It was hell going through the treatment but when finished, I was SO much better.  The only way out is pushing THROUGH the treatment.  Push through these times and know it WILL GET BETTER!

• These infections take TIME to heal. This is a hard concept to understand.  We are used to immediate results in our culture.   We can’t grasp the fact that these infections are so different from the standard, acute UTI that responds to a short course of antibiotics.  These infections are not even in the same category as those.  You need to set your expectations realistically from the beginning.  You need to buckle up and plan for six months to up to two years before you are free.  This helps you understand this is a marathon and not a sprint.  This hopefully makes the journey a little easier because you aren’t disappointed when it proves to hang on longer than you thought it might.

• Find an EXCELLENT doctor and DON’T WASTE YOUR TIME trying to convince or get help from MORON doctors that don’t understand these infections. There are only a few doctors in the WORLD who are EXCELLENT.  Travel to see them.  Do whatever you have to do to get to one of them.  You are likely not going to “convince” your doctor to treat you differently than what they were trained to do, and they’re not going to believe you the “patient” might know more than them.  Currently, the only two that are recommended are Dr Stewart Bundrick in Bossier City, LA, in the USA and Professor Malone-Lee in the UK. Dr Bundrick is my HERO.  Additionally, Ruth Kriz has been a trailblazer in managing these infections, however, she is retired.  She is currently training physicians on her protocol and there should be more help throughout the US shortly.

• If you aren’t noticing any improvement in symptoms after about two or three months on an antibiotic, take another DNA test and see the new results to confirm what is going on. You may have a biofilm issue and new bacteria are busting through that are not covered by your antibiotic.  Ruth Kriz, an expert on biofilm infections and treating embedded infections, says that if she sees two back-to-back DNA tests together in a fairly close time frame with DIFFERENT pathogens, this is a sign that a biofilm is present.  When that happens, you may need to switch up your medication in order to cover the emerging pathogens.  Biofilms are like layers of onions.  You have to get through all of the layers (and each layer may have completely different bacterial colonies) until you get to your core.  Your core is reached when you continue to see the SAME pathogens coming up on your DNA reports.  When you get to your core pathogens, it is ESSENTIAL that you get on LONG-TERM, FULL-DOSE antibiotics (and maybe a combo of two or more) and STAY ON THEM WITHOUT COMING OFF FOR ABOUT SIX MONTHS.  The reason for this is bacteria can replicate incredibly fast and then re-embed in the bladder, creating this viscous cycle that is nearly impossible to eradicate.  It is ESSENTIAL to keep antibiotics in the system to continually kill pathogens shedding through the bladder lining.  This breaks the cycle and will allow for your body to completely eliminate the bacteria.  This takes TIME to accomplish, possibly six months to a year or more.

• Get your partner DNA tested also. Be certain you are not passing bacteria back and forth and use a condom until your tests continually come back clear.  This can really happen even though some urologists may disagree.

• Consider adding in adjunctive supplements to your antibiotic regimen, such as: vitamin D, biofilm busters, D-Mannose, NAC, Noni Juice, probiotics, CoQu10, a multivitamin and Lauracidin.

• Consider enlisting the help of a local functional medicine doctor to help manage your overall health as you are fighting these infections. Also get your complete blood count, liver and kidney panels run ever six to eight weeks or so while on long-term antibiotics so that you can ensure your body is tolerating the long-term medication.

• Consider getting a microscope and a hemocytometer counting chamber. Learn how to do your own cells counts as Professor Malone-Lee’s protocol uses. If you are a patient of his, you can provide him with this very helpful data if you are long distance from him.  Regardless, if you are a patient of Dr Bundrick or another doctor, learning this assessment tool is invaluable because you can see what is going on when you are feeling a flare and it also helps you understand how your body is responding to the antibiotics you are on.  Additionally, seeing white blood cells and epithelial cells PROVES that you DO IN FACT HAVE AN ACTIVE INFECTION.  This affirming information really helps you push through to the only treatment plan that works (in my humble opinion), which is long-term, full-dose antibiotic therapy.

• If all else fails with antibiotic treatment or if you are getting negative DNA reports, yet still are symptomatic, consider treating for Schistosomiasis and bladder parasites. These don’t show up on Microgen DX tests or Pathnostics.  Aperiomics can test for them, but they only detect what is in the bladder the very moment you submit a sample and parasites can hide unless it is an active period in their cycle. This makes it hard to rely on the Aperiomics result.  It is quite challenging to find a test for bladder parasites, but consider working with a functional medicine or infectious disease doctor (if you can find one to work with you as many refuse to see patients like us) to see if you may be dealing with a bladder parasite.

• Join a Facebook support group such as Embedded UTI Support/Advice and/or Chronic UTI Resources and Support – US Based (if in the US). These people are going through similar issues and you can all brainstorm together. The support you can get while navigating through your infection is beyond valuable.

• Stay positive. Focus on the PROGRESS you are making along the way. Look at how far you have come in terms of symptom management and severity.  It may take several months to start feeling better.  However, each month should bring greater relief once you start getting the correct help from your physician.  Celebrate the little victories and one day you will realise that you have achieved the BIG victory and are completely free!  God bless you all.  Hugs!

*Please Note:  There is no consensus in the scientific community on the value of DNA-based molecular testing in diagnosing chronic UTI.  Some UTI research experts are critical due to the current lack of understanding of the urinary microbiome and the inability to conclusively identify and describe the microbes responsible for health and disease.   We do accept that people improve under the care of practitioners who employ DNA testing to help guide treatment.   Therefore, it may be best used by experienced practitioners in conjunction with the patient’s history, symptoms and other tests.  As part of your own research into treatment options, please ask for evidence that a practitioner has experience and success using this approach and the cost involved in repeat testing.   In Australia, anecdotal reports so far show difficulties for people finding practitioners who understand the test results, and more importantly, have specialist knowledge in treating chronic UTI.  The repeat testing some treatment protocols require could be considered cost-prohibitive by many.  Although it is still early days, it is hoped that DNA-based  molecular testing will one day allow the identification of a personalised healthy urinary microbiome and inform future treatment options for UTI.  You can read more about UTI testing here.  To read our 2018 interview with US research scientist Evann Hilt from Loyola University,  please click here.  

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.

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Naomi is a young Canadian woman who experienced her first UTI at the age of 19.  Following typical antibiotic  treatment, she was left with vague UTI symptoms that became an unwelcome daily companion.  Within the following year, her symptoms gradually escalated into bi-monthly acute UTI attacks.   Naomi’s doctor found an antibiotic solution that quickly brought her infections under control, but she was unsure how to stop the recurrent UTIs from striking at random and dominating her life.  While being treated by a popular Calgary acupuncturist for unrelated back pain, the practitioner suggested acupuncture might help her recurrent UTIs as well.  Naomi, now aged 29, felt she had nothing to lose and started acupuncture treatment targeting her urinary tract in January 2019.  She reports she has not had an acute UTI, or required antibiotics, in almost a year.  You can read more about Naomi’s acupuncture experience here.

My first UTI never tested positive

My bladder problems began when I was 19 years old. At first, I found myself going to the bathroom every five minutes with the biggest urge to pee.  When I would go, barely anything would come out—but it never burned (dysuria). It was so odd.   I ended up seeing my doctor and none of my urine results came back positive for a UTI.  The doctor treated me for a UTI anyway, but it didn’t help at all.

I continued to have symptoms (the urge to pee).  Some months it was a little better, other months it was worse.  Then at about the age of 20, I had my very first official UTI.  That was the first of many to come. Sometimes my UTI tests would come back negative, but I would be prescribed antibiotics anyway.  Macrobid usually did the trick.  When I noticed symptoms starting, the burning would slowly get worse over a few days.  But more recently my UTIs would progress to burning within 30 minutes of me feeling any symptoms, with pain going from zero to a million.  It was no longer my typical slow burn that would worsen over the course of a few days.  It has become instantly unbearable. This was when Macrobid stopped working for me. It turned out the tests were showing I had a different bacterium causing my UTIs.  I don’t know what it was called, but unfortunately Ciprofloxacin seemed to be the only antibiotic that would work.

By now I was getting recurrent UTIs every other month

By now I was getting UTIs every second month.  It was this same, new bacterium showing up every single time over the course of about a year—it was driving me insane! I would still have symptoms here and there between acute attacks. I always felt like I had to pee (but not a crazy urge), I always felt like I wasn’t emptying out my bladder completely, I would sometimes (quite often) feel a tiny burn at the end of my pees, and my lower abdominal area always felt a little bloated. My UTIs had ruined my sex life, I had anxiety every time I peed, I was depressed and I was just miserable. Doctors always told me it was unfortunately a ‘woman’s thing’ and that once I had a UTI, I would be susceptible to them for the rest of my life.

My doctor did want to prescribe antibiotics to take after intercourse, but she told me since the bacteria I always get now is quite different, she wouldn’t feel comfortable giving me anything other than Macrobid to take prophylactically after intercourse. However, since Macrobid isn’t sensitive to the bacteria the tests were now showing, she had no other options for me. So, again, for the millionth time, I was told to pee before and after intercourse, wash before and after intercourse, drink a lot of water before and after intercourse, drink a lot of water anyway throughout the day, don’t ever hold in my pee, etc etc! I was even getting my partner to wash before as well.  It literally became a chore to have sex.

A little backstory before I begin my success story

I had also been suffering from chronic back pain since I was 11. Doctors always told me I was too young for back pain and that I just needed to stretch and exercise more. I’m now 29 and I still hear the same things from my doctor. Nothing had ever helped my back pain.  I tried a chiropractor, massages, physiotherapy, yoga, other exercises, etc).  So, I told myself I just needed to suck it up because nothing was helping.

My mother-in-law had been trying to convince me for the past five years to see her acupuncturist.  But by that point, I had already lost faith that anything could help, so I just kept saying no. One day, she literally dragged me to see her acupuncturist and told me she had made an appointment months ago and she would pay for my first few appointments.

After three months (and three acupuncture treatments), I realised I had stopped complaining/thinking about my back. It was a miracle! I couldn’t believe it! I continued to see the practitioner once a month.  I still have appointments to this day.

Acupuncture had fixed my back pain but could it fix my chronic UTI?

During one of my acupuncture treatments for my back, I told her that I might have to use the bathroom during the session because I was still getting over a UTI. She asked if I had a history of UTIs.  I told her I was getting them every second month, and that I had been getting them since I was 19.   My mother and sister also deal with the same issue, so I mentioned I thought it might be genetic. Her next response was “Why didn’t you tell me sooner?! I can help you!” I was in disbelief. I didn’t believe acupuncture would help my chronic back pain, but it did; I realised the needles obviously did something to release the muscles in my back. However, when she mentioned she could help my chronic UTI problem, I thought to myself, “How the hell could these needles work to prevent bacteria from causing a UTI?” The acupuncturist told me it would help strengthen my urinary tract area and boost my immune system.  I didn’t believe this could be true, but since I was going once a month for my back pain anyway, I might as well let her work on my lower abdominal area while I was there.

She started treatment on my lower abdomen in January of 2019 when I had my last UTI.  I literally have not had a full blown UTI since and it is now almost December! I still do feel a tiny bit of (urge to pee) symptoms, but nowhere near as often as I did prior to acupuncture.  I feel like I FINALLY have my life back and I finally have my sex life back (I’ve even loosened up a lot of my pre- and post-sex routines!). This is the longest I’ve ever gone without a full blown, acute UTI and I feel free again.

I guess acupuncture really can strengthen weak areas in your body—even your kidneys and bladder! She told me the constant antibiotics weren’t good for my body, but she understands this is the only thing that helps get rid of UTIs quickly. She said I would need to work on building my immunity back up, which I obviously have with her help!

I did have a random blood test done by my doctor about six months ago and she told me my white blood cell count was up (and I wasn’t sick at all with anything), so they wanted to test me again in a few months just in case. I mentioned it to my acupuncturist.  She seemed pleased and said it appears my body is working to build my immune system back up.  She said she could also tell my immune system was improving based on her assessments of my health. So that was kind of cool (unless it was a weird coincidence?).

Have I done anything else that I think may have helped my UTIs? No, nothing! I do exercise regularly, but I always have. I have not changed my diet in any way, and I admit I do kind of eat horribly. I love sugar and I hate vegetables! I tried D-mannose for about a year for my UTIs, but it never really helped me (but I also realise I didn’t have E. coli so of course it wouldn’t work). I don’t take supplements—I try to when I remember, but I hardly ever do. As for any medication I take regularly, only the birth control pill and I’ve been taking that since I was 18 years old.

My advice is to never give up

Something out there will work for you. Acupuncture was it for me! If that is something you would like to try, I would highly recommend you look for someone who is extremely busy and well known. I tried acupuncture with other people before and they weren’t nearly as good or helpful as my current one. My acupuncturist is fully booked for three months, so I always book five months in advance.  So, it’s a good idea to find someone who is impossible to book appointments with! That’s how you know they’re good. I live in Calgary, Alberta, Canada.  It’s a city with 1.3 million people and there are a TON of acupuncture clinics here, but barely any are as busy as the person I go to. Good luck, and I hope acupuncture works for you too!

Pictured:  Naomi and her cat

A little about my acupuncturist:

My acupuncturist did a Masters degree in Microbiology prior to going to school for acupuncture—she’s a scientist. She said she would never choose a profession that wasn’t based on proven science and empirical research, which acupuncture is (I had no idea—I’m also a researcher). She is extremely knowledgeable and it blows my mind how much she knows about the human body.

My acupuncturist told me any good acupuncturist would be able to help anyone with UTI issues.  However, there are bad ones out there so be careful. In case you’re curious, here are her qualifications: She studied Traditional Chinese Medicine (TCM) at the International College of TCM in Victoria, Canada. She also has a certificate in HTT (Herbal Transdermal Therapy) in East-West Medical Society and the Canadian College of Acupuncture & Oriental Medicine.

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.

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Elle suffered chronic pelvic pain. By the time she was 25, investigations left her with diagnoses of irritable bowel syndrome (IBS), stage III endometriosis, general anxiety disorder and interstitial cystitis (IC). Even though she had never noticed bladder symptoms during this time, she was treated daily with Elmiron. Two years into her treatment, like a bolt from the blue she woke to crippling, stabbing bladder pain, abdominal pain, bladder burning and frequent, urgent urination. These symptoms never left and she had nowhere to turn. Since she was never convinced of her original IC diagnosis, she started to research other possibilities. Being in Canada, she was able to access a more sophisticated urine test and a practitioner who has a history of successfully treating patients with low grade, chronic bladder infections. After eight months of treatment targeting her infection, she says she is well on her way to being healed. You can read more of Elle’s story here.

I was diagnosed with IC before I even had symptoms

I have been sick my whole life. If any flu or bug was going around, I would get it.  I always had a headache or a stomach ache. By age 25 I had been diagnosed with IBS-C, generalised anxiety disorder and stage III endometriosis. I also had a number of yeast infections and had a couple UTIs in young adulthood, but nothing that seemed particularly out of the ordinary. You may be wondering what any of this has to do with chronic UTIs. The answer: everything.

My first laparoscopic surgery was exploratory to determine if I had endometriosis, determine how bad it was and ablate any lesions they found. When I woke up, I was told it was stage III, a cyst on each ovary and that the lesions were too complex and bound to other organs to be ablated.  I would require a second surgery with a more experienced surgeon.

I believe I was still 25 when I had my second laparoscopic surgery. The doctor told me she was going to remove my appendix while in there.  She said because I suffered from so much chronic pelvic pain, if I was ever in an emergency situation I could tell the doctors I don’t have an appendix.

She also told me she was going to do a scope of my bladder, which meant nothing to me and honestly I didn’t ask questions. I had no issues with my bladder other than I noticed I urinated more frequently than my friends. No pain, no urgency, no real frequency, I just used the bathroom more while we all sat around drinking beer.

When I woke up the doctor told me the surgery was a success, everything had been removed safely and she was able to ablate much of the endo lesions, which she said she felt were stage IIII. She opened a file and took out a picture. It was a picture of my bladder, which she held next to a picture of a healthy bladder for comparison. Mine was red, full of red dots connected by red lines. She told me, as I lay in the hospital bed still pretty sedated, that this indicated I had interstitial cystitis (IC). I don’t think I grasped the severity of the situation and despite being pretty loopy, I recall the expression on her face as confused; confused as to why I didn’t care. She was telling me I needed to take Elmiron for it daily, for life, and that my diet would need to change. I can’t recall everything she told me.  I could tell she was concerned, but I wasn’t because I displayed absolutely no symptoms of this condition. I was sitting there nodding and agreeing while she was trying to tell me I had this incredibly debilitating condition. I think we were both confused.

Two more years pass, and I am taking the Elmiron every day as I am told, with no issues except the endometriosis is coming back because I refused to take the birth control that is supposed to help suppress it. I had learned what the endo pain felt like and how to deal with my periods.  This was my normal and this I could handle. I would have been perfectly fine living like this for the rest of my life if I had too — not because it wasn’t bad but because I had normalised it; I had it under control.  That was until one day in April the same year.

Two years later my bladder symptoms hit me like a tonne of bricks

Aged 27, I woke up one morning with crippling, burning, stabbing, debilitating pain in my abdomen and rushed to the bathroom to urinate, which I did another 10 times in an hour. Of course nothing was coming out but the urge to urinate was there. And there it was, interstitial cystitis, two years after the diagnosis.  It woke me up in pain and that didn’t go away for the next three years.

I had the textbook IC symptoms: pain, burning, urgency, frequency, noticeable increase in symptoms associated with acidic foods, etc. I went to a urologist in those three years and had a number of scopes, all of which came back showing a perfectly healthy bladder. I saw the pictures with my own eyes, in real time on the screen, my bladder looked healthy. I was so confused and distraught I just laughed while looking at them. Why would I have a scope at age 25 that showed that I had IC when I had no bladder symptoms, but now I am having numerous scopes from aged 27 to 30 showing a perfectly healthy bladder while I am in absolute agony?

My urologist said I had been “demoted” from IC to PBS (Painful Bladder Syndrome).  This meant I displayed all the symptoms of IC, showed no infection, but had a healthy looking bladder. I started to look up PBS and learned that it was more of an umbrella term that IC fell under. None of this was making sense and I felt my urologist was throwing acronyms and words at me to shut me up. I would meet with him every six months on top of having the scopes. The appointments  only lasted five minutes. He would ask what was wrong.  I would tell him I was in agony.  He would tell me to “maintain the status quo”. He never gave me any other medication or painkillers. All he meant by this was stick to my diet and try to figure out which foods I could eat and keep taking the Elmiron. At this point I was eating carrot sticks for breakfast, chicken for lunch and eggs for supper. This was all I could eat.

I was at one such appointment and by this time I was 30.  He once again asked how everything was. I explained I felt things were actually getting a bit better and the pain was isolated solely to the mornings and nights. He told me verbatim “that’s not how IC works” to which I replied, “then is it possible I don’t have IC?”.  He brushed this off and little did I know this would be my second last appointment with him.

Did  I have IC, PBS or was it a low grade, embedded bladder infection?

This really set in motion a new way of thinking for me.  I started looking up IC more thoroughly and learned of a woman, aka ‘IC Big Sister’, in the United Kingdom who was diagnosed with IC which turned out to be a treatable infection. I later found ‘Vancouver UTI Girl’ who explained much of what ‘IC Big Sister’ did but pointed me to DNA testing and told me to get a test and just see what comes back. If you are unfamiliar, there are labs in the United States that use DNA diagnostics to identify potentially harmful bacteria in the urine versus the standardised culture test done in hospitals and clinical labs*. She also told me about biofilms and how some people who were diagnosed with “IC” turned out to have a low grade, deep embedded infection in the lining of their bladder which is protected by biofilms. These people said to reach the bacteria you would have to break down the biofilms with a biofilm disruptor.

I ordered a test along with bottles of the biofilm disruptor, sent off my urine sample, and soon I was opening my results with more anxiety than I had felt in years. E. coli! E. coli! The bacteria that some say is responsible for 70 percent of UTIs was in my urine. “I got it” I thought, “I solved it”.  But it was still far more complicated than that.

I made an appointment with my urologist and showed him my results. “Remember you said my symptoms are not those of IC? Look, I have an infection”. He took a quick look and started talking about how this test was not considered valid or reputable and he had not even heard of this lab.  And as I began to cry, realising he wasn’t going to do anything to help me,  he walked out of the room.  That was the last time I saw him.

I thought that was it for me.  I’ll be honest, I went into some dark, dark places in my mind. Nothing made sense and the doctor who specialises in the organ that was causing me so much distress had walked out on me at the sight of me crying.

For some reason my appointments with him were always two days before my check-ups with my gynaecologist. Feeling completely defeated, I showed her the test results. Despite this not being her area of expertise, she was willing to work with me on this, especially because my symptoms did not behave like IC and the scopes made no sense.

A cystoscopy showed my bladder was now angry and raw

In December of 2018, when I was 30 years old, my gynaecologist told me we were going to do another scope to see what my bladder looked like now and we would go from there. I didn’t tell her (I do not advise this and I should have told her), that I had started taking the biofilm disruptor. If what I was told about biofilms was right, the disruptor should break down the biofilms and allow the bacteria to be exposed in the bladder.  This should show an unhealthy bladder.

My thought process was that if I took the tablets and this scope came back showing an unhealthy bladder for the first time in three years, then it meant there really was bacteria there affecting my bladder wall.  It would mean I didn’t have IC, rather a low grade, complex, deep embedded, chronic UTI.

I was also having a polyp removed so I was being put to sleep for this procedure. When I woke up, the doctor was at my bedside. Like before, still sedated (and here I go crying again as I type) she told  me they had successfully removed the polyp and that my bladder looked “angry”. I asked her what that meant as I wanted to hear her thoughts on it and if it meant I still had IC. “No, an infection would do this. I don’t think you have IC and we will no longer be treating you for IC”. I can’t tell you how hard I cried (or how hard I am crying now) that someone finally listened to me. She gave me painkillers and told me she was going on a sabbatical for a few months, but when she got back we would get together and take a comprehensive look at everything going on.

I found a practitioner who knew all about treating low grade chronic bladder infections

During that time, however, I was able to get an appointment with nurse practitioner and chronic UTI expert, Ruth Kriz, and she took over my bladder health from there.  This was in February 2019. Ruth explained that these infections have usually been there a long time and are there in layers, meaning one round of antibiotics was never going to fix it. She is also an avid believer that these infections involve biofilm.  She advised I stop taking Elmiron immediately, as it was acting as a barrier between the antibiotics and the bacteria deep in my bladder wall.  With Ruth’s treatment protocol, it is a cycle of taking a test (DNA), see which bacteria are there, do a round of antibiotics targeting the pathogens identified, re-test, repeat.  I must have been through this cycle around 10 times since February 2019.  Every time I am on a round of antibiotics, I go into a remission (with the exception of one type called amoxicillin clavulanate which is acidic itself). This only proves that this is an infection, as while taking antibiotics my symptoms go away.

I have been dealing with this pain for four years now, although the pain did start to go away after three years, once I began antibiotics. Each time I am off antibiotics, my symptoms come back, but they are less severe each time. Every round of antibiotics is two steps forward and one back, but that is still one step forward!

However, the big question is: why are people getting chronic UTIs and being diagnosed with IC (even though we expect it’s an infection for the majority of people)? Why do some people get it? What is “wrong” with our bodies that make us susceptible to this?

One theory is that we have an autoimmune disorder (just like endometriosis and IBS are theorised to be). Another is that we have an autoimmune deficiency whereby our immune system is run down and some naturally occurring bacteria take advantage of this and overgrow (opportunistic infections), or our body is too weak to fight off a low grade infection of a bacteria not naturally occurring but has made its way into the body (such as Escherichia coli and Enterococcus faecalis).  I believe the immune system can be deficient as a result of mood disorders, such as anxiety. From the time I was born I was a breeding ground for this to happen because of my autoimmune disorders later coupled with the anxiety, which caused an autoimmune deficiency.

If I were to give any advice to anyone with chronic UTIs (or someone with a diagnosis of IC) it would be:

• Find a doctor who is willing to work with more sophisticated testing. Dipsticks and standard culture tests used in our hospitals are simply not as advanced. Better tests will show bacteria, where standard tests show nothing.

• I also had success taking glucosamine chondroitin — I don’t know how it works but if I go two days without it I am crippled over in pain. Make sure there is no soy or artificial sweeteners in it.

• Lastly, many of us find aloe vera capsules helpful, but I think this should be reserved for flares and not used every day.  My practitioner describes aloe vera as “a cheap man’s Elmiron”.  If you use it every day you are basically putting a coating over the bacteria and biofilms making them harder to kill with antibiotics. For those who find benefit, there are brands that use bladder friendly ingredients and I am happy to share what I have found useful if you contact me.  I have found they truly help during a bad flare by adding a superficial coating to the bladder and urethra (it helped my urethra the most).

How my life has improved since targeting my bladder infection along with my endometriosis and IBS 

I am 31 years old and I beat anxiety, my IBS is under control with a great medication, my endometriosis is SHRINKING as a new medication came out which is similar to birth control but doesn’t cause depression.  Well, I guess this means I beat depression too, as I spent years on and off birth control which induced it.  And I am about to beat “interstitial cystitis” aka the chronic UTI from hell.

I can’t lie, I am exhausted, but I have learned with IC / chronic UTIs you have to take control of your own health care. Nobody will seek out these answers for you except for the members in our little online community.  I am exhausted but it was a fight worth fighting and I can’t wait to travel to exotic places like Australia where I assume everything is trying to kill me and I can eat spaghetti infused with vodka and soy just because I can.

I am not a special case and I assure you I have spent nights on the bathroom floor screaming “why me?” and I mean that literally. That is not a metaphor, that is how I lived for six months. Now I am returning to work two days after I have typed my story. I am not fully healed; I would say  I am about 80 percent there.  I am still in treatment with Ruth Kriz and I am really looking forward to the day this infection has completely gone, because I know it is coming.

Oh, one last thing: Remind yourself, every day, this is not a life sentence.  It is, however, a struggle, a fight, a battle, a war. While explaining my illness to a friend, he asked me to look up the poem “Invictus” by William Ernest Henley. He said my story of how failing to accept my fate of an IC diagnosis reminded him of this poem. It truly touched my soul and I urge you to read it as it may inspire you to keep fighting despite being tired of fighting. I sent this poem to my closest IC buddy, Megan, and it has become something of a motto for us. I will leave you with the line that always reminds me that I have come so far but am not defeated: “my head is bloody, but unbowed.”

Please Note:  There is no consensus in the scientific community on the value of DNA-based molecular testing in diagnosing chronic UTI.  Some UTI research experts are critical due to the current lack of understanding of the urinary microbiome and the inability to conclusively identify and describe the microbes responsible for health and disease.   We do accept that people improve under the care of practitioners who employ DNA testing to help guide treatment.   Therefore, it may be best used by experienced practitioners in conjunction with the patient’s history, symptoms and other tests.  As part of your own research into treatment options, please ask for evidence that a practitioner has experience and success using this approach and the cost involved in repeat testing.   In Australia, anecdotal reports so far show difficulties for people finding practitioners who understand the test results, and more importantly, have specialist knowledge in treating chronic UTI.  The repeat testing some treatment protocols require could be considered cost-prohibitive by many.  Although it is still early days, it is hoped that DNA-based  molecular testing will one day allow the identification of a personalised healthy urinary microbiome and inform future treatment options for UTI.  You can read more about UTI testing here.  To read our 2018 interview with US research scientist Evann Hilt from Loyola University,  please click here.  

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.

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The post Elle’s Chronic UTI Story appeared first on Chronic UTI Australia.

In 2008 America went to the doctor for a urinary tract infection (UTI).  She was treated, but her infection came back after each course of treatment.  This went on for several months.  Her confused doctor referred her to a urologist, where she was diagnosed at the first appointment with interstitial cystitis (IC).  For five years she was treated with a cocktail of medication to help manage her symptoms, but this did little more than take the edge of her pain and caused woeful side effects.  America chanced upon information about a UTI specialist in the United Kingdom who specifically treats people like her who have been diagnosed with urinary syndromes and recurrent UTIs.  America decided she had nothing to lose and set off across the Atlantic for a consultation.   With the approval of her new doctor, she stopped her IC medication and started her new treatment.    Ten months in, she claims to feel the best she has in 10 years.  She still has some symptoms, but only rarely notices them.  After a decade of pain, despair and depression, fighting off symptoms and dealing with significant medication side-effects, she now feels she can refocus on her work, her relationship with her husband and children and her future.   America’s thrilled to have her life back on track.

A UTI kicked off 10 years of pain and misery

I am 38 years old and a working mother of two children living in the United States.  My story begins like this:   In 2008 I got a really bad UTI. It was so bad that no pee would come out after trying at least 20 times, but the urgency and the burning was so intense that I could not sleep, nor sit, or focus on anything else. I went to my family doctor who diagnosed me with a UTI via a dipstick urine test and put me on a round of seven-day antibiotics. I felt great two days later and continued the medication until it was finished. I felt better, but three weeks later the infection came back. I went back to my doctor, who tested me again via a dipstick urine test. He said I had another UTI. He put me on another course of  seven-day antibiotics. Again, I felt better. A month later, I was in pain again. I went back to my doctor a third time. He said, “I can no longer treat this, you have to go see a urologist to see what else is going on because the two courses of antibiotics should have worked”.

I was referred to a urologist who did a cystoscopy (without sedation) at my first visit. A cystoscopy is where they insert a tube with a camera at the end, via your urethra, to look inside your bladder. It was extremely painful. Once the procedure was done, he told me I had interstitial cystitis (IC). I asked what that was and he said it was an incurable bladder disease that causes pain compared to the pain a cancer patient feels, blood in the urine, lesions on the bladder that bleed and constant burning and urgency. I asked what the treatment was. He said “NONE”.

I went home and researched treatment options for interstitial cystitis

I left his office in shock and immediately started researching what he told me I had. I couldn’t find much about IC. From 2008 to 2010 I just suffered. I dealt with the constant fire in my bladder daily. Since I was told there was no treatment, I would take over-the-counter AZO to help with my symptoms and I would just cry all the time. I was diagnosed with depression in 2010. I was so sad that my life would be so painful for the rest of my life.

I started Googling for interstitial cystitis specialists in my state. I found one!! Just one! I went to see the specialist and they were horrible.  The specialist made me feel like I was crazy and talked down to me about my symptoms. I never went back.

In 2011 I got remarried and was put on my husband’s health insurance. The insurance company is known to have some of the best doctors on the planet! I decided to call the urology department and make an appointment just to see what they would tell me. I met with a doctor. She was god-sent. She was so kind and understanding. She put me on a cocktail of four medications to be taken three times a day to deal with the symptoms of IC.  Since there is no cure, all she could do was treat me to make me comfortable enough to go to work and function as a mother and wife. I saw her for five years—taking the same medications over and over for five years. My medication was called Elmiron. The main side effect for me was hair loss. Needless to say, my husband was driven crazy by the amount of hair I left all over the house.

In 2016 my insurance was changed, so I had to find a new urologist. I was freaking out! Who would understand IC as my last doctor had? Would they know how to treat me?

I Googled another doctor in my area. He was very nice and wanted to do another cystoscopy to better understand my stage of IC. Since I remembered how painful the first cystoscopy was in 2008, I asked to be sedated this time while they did the procedure. Once I woke, he explained my bladder had classic signs of IC. I had lesions all over my bladder that were inflamed and bleeding and redness all over. He said I could do the following:

1. Continue taking the medications my previous doctor was treating me with.
2. Put Botox shots in my bladder to numb the nerves to reduce my urgency and frequency.
3. Have a procedure to put a device called an Interstim in my spine that would send a frequency to the nerves in my bladder to lessen the symptoms.
4. Do medication instillations via self-catheterisation to relieve the symptoms.

I chose the first option. I was NOT going to do any of the other things because it all terrified me. Since 2016 I have been on my cocktail of medications again four times a day.

What is an embedded UTI and could I have this?

My life since 2008 was horrible. Having a bladder that feels like someone is pouring acid on it every single day is mentally, emotionally and physically exhausting. Because of my condition, I was now also suffering depression, anxiety, PTSD, agoraphobia and low self-esteem. Marital issues followed because since I remarried, I would always worry that my husband would tire of my health issues and leave me or cheat on me since my symptoms were affected a lot by sexual activity. I would hurt for days after intercourse which would make me mentally dread it and, of course, caused paranoia around my relationship.

Randomly, on a support group in early November 2018, I stumbled across a post from a woman talking about how she had been treated by a UTI specialist in the United Kingdom and her IC was cured. I was like “What?!!?? Who is this man??????!!!!” I started Googling like crazy—for a whole month! I read article after article on online, then I read post after post on social media. There were so many women who had seen this specialist and he had told them “You don’t have interstitial cystitis; you have an embedded UTI”. So, then I started researching embedded UTI and his name kept popping up as well. Embedded UTI meant that a UTI was so bad that it needed a longer course of antibiotics because it was so deep in the bladder wall—a seven-day course was never going to cure it. In my heart I always felt that the initial UTI from 2008 was never dealt with correctly. I asked a lot of ladies in the online groups about their experience with Dr. Malone-Lee’s treatment and they all raved about it. All the women I spoke to were from the United Kingdom.

In early December I decided to talk to my husband about traveling across the world to see this doctor. My husband asked, “Why all the way there?” The reasons are because in the United States, the standard test for a UTI is a dipstick test [and culture]. If you have an embedded UTI, those tests will often come back negative. Urine needs to be either tested fresh immediately under a microscope or cultured for a longer time than standard testing used in the United States. If I handed my urine off to Dr. Malone-Lee, he could possibly tell me I have IC or that I don’t—it was a 50/50 chance and I was prepared to take it.  I mean, why wouldn’t I? No one in the United States looks at urine under a microscope immediately after peeing that I found. Such a simple thing could help cure me, but I would have to travel all the way to London to do it. My husband said, “Do it…if this man can possibly give you some quality of life back, then it’s worth it.”

I started a funding page for the $4,000 I needed to travel to the United Kingdom. I only raised enough to pay for my hotel stay and I was grateful. Because I am not rich, I put it on a credit card and booked my trip.

I flew across the Atlantic to see a chronic UTI specialist

On January 8, 2019, I saw Professor Malone-Lee. My 16-year-old daughter went with me for support.  On arrival, the receptionist gave me a urine sample tube so that I could go pee and have a sample ready for the Professor. I was then called into his office (by him) and he immediately took my sample and placed some drops onto a microscope slide. Not even 10 seconds had gone when he said “OK, I see a diagnosis already…”. He then said, “I am going to be silent while I continue to look at the slide, so bear with me”.  He had a counter in each hand and was clicking them over and over. While looking at the slide he would say “wow”, “oh my god”, “you poor thing”, “you have been in lots of pain haven’t you”, “how have you been living like this?”

He finished and said, “You definitely have an embedded urinary tract infection. I see so many white blood cells and epithelial cells in your urine, which means infection. You have probably had this infection for 10 years and it is deep in your bladder. I am going to put you on a long course of antibiotics. You will have to be on them for around a year. I am also putting you on a medication called Hiprex. That is an antiseptic for the bladder.” He then said the words I was praying for, “This is NOT interstitial cystitis. We are going to make you better”.  I immediately put my hands to my face and started crying.

He came around to where I was sitting to show me some slides. Each slide shows the bladder and the layers of the bladder lining. They show how initially the bacteria shows itself, then multiply over and over, then reinfect, getting deeper and deeper into the layers of cells that line the bladder.

He gave me a prescription for eight weeks’ worth of antibiotics and Hiprex and scheduled a follow-up phone appointment. I left there in shock. I had so many emotions. I was shocked, relieved, mad, happy, excited, all at the same time. I was mad that the past 10 years I have been dealing with something that could have been cured. I was mad that I almost gave up. I was mad that the past 10 years have been a living hell. I was ‘the girl on fire’—burning inside all day, every day. If a doctor in the United States would have tested and prescribed treatment for me this way at the start, I could have gotten better a long time ago.  I called my husband. He was ecstatic and asked why I didn’t sound happy. I told him that I just could not process all the information and that I had too many feelings all at once.

I started treatment for a chronic UTI and my bladder pain started to ease

I began taking both medications prescribed. The first couple of weeks I was in a constant flare. I cried a lot from the pain. I could barely sit. I had to leave work one day and call out the next. The bacteria were being disrupted in my bladder and it was causing me so much pain. But after two weeks, I started to feel better. I only noticed my bladder now about 20 percent of the time. Following this, I had my ups and downs. Some days I didn’t feel my bladder at all. Before I started antibiotic treatment, as I sat at my desk working I would be on fire 100 percent of the time. Some days I still do have intense burning, but I attribute that to everything trying to heal. I have more good days than bad, and that is a major improvement from where I was before my appointment in London.

I had sought help and support from online IC support groups over many years. I have read stories about women who ended their lives because of the inconceivable pain they suffered from ‘IC’. Some have marital issues because their partner doesn’t understand why they can’t have intercourse as often as they would like. Their lives are torn apart by a disease that keeps them from being able to enjoy life because of being in constant pain. Their kids suffer because their mother is not present.

I accept some of those women may have IC. But they don’t know 100 percent because their doctors are basing the diagnosis on a test that is proven to be inaccurate. The dipstick test does not provide accurate results of what exactly is floating in their bladder. I’ve discovered the only way to know for sure if you have IC or an embedded UTI is by doing better testing via microscope, broth cultures or DNA testing.

I wish that instead of just telling me over and over that there was no cure for what I had, and that I just had to live with the constant pain, I would have had more choices in finding out the root of my problem. It’s not good enough to dope me up with a cocktail of medications that caused hair loss, sleepiness while working, dizziness and grogginess, just to allow me to function. If a dipstick test keeps coming up negative and the patient continues to have symptoms, then maybe we should say, “let’s find a way to look at the urine more deeply because SOMETHING has to be causing these symptoms”.

Where my life is now

I have been in treatment for ten months now (October 2019).  I am feeling better than I have in 10 years!  Once I settled into my treatment, I gradually started having more good days than bad days.  Recently I had an upset with a three-week flare for the first time since my treatment started, so my medication was adjusted and I am feeling better again.

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.

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The post America’s Chronic UTI Story appeared first on Chronic UTI Australia.

At the age of  28, Angie has suffered post-coital urinary tract infections (UTIs) for her entire 20s.  Following an investigative cystoscopy to find the cause, her situation took a dramatic turn for the worse.  She went from suffering UTI symptoms only after sex, to suffering them constantly.  Since dipsticks and cultures no longer showed the infection, she was petrified the diagnosis of an ‘incurable urinary syndrome’ was looming.  Angie begged for a referral to a specialist UTI clinic in London for a second opinion where she was swiftly diagnosed with a chronic bladder infection.  After five years of antibiotic treatment, Angie’s life has much improved from her desperate earlier years, but her embedded infection remains stubborn and difficult to fully shift.  Find out more about Angie’s journey.

Justifying my illness and my treatment

I’ve taken a long time thinking about how to write about my illness and treatment experience. I realised that my first instinct was to paint as rosy a picture as possible of my life now that I’ve been in treatment for so many years, even though I do not always feel positive. I think that I felt inclined to give this impression because:

a) I want to give encouragement to other sufferers; but also

b)   I realise that, when discussing my illness, I’m usually in a defensive position. It sometimes feels like I’m endlessly explaining my illness and justifying my continued treatment.

I have these conversations with friends, family, and doctors…and friends who are doctors (those are the most difficult)! All the above are caring and well-educated people, but the majority seem to fail to believe that I have “tried everything” before “resorting to” long-term antibiotics; which is my current treatment.

I understand that people ask me these questions because they care about me, and perhaps I sound unduly impatient or bitter (perhaps I am!).  However, I do feel sick of explaining why I—a 20-something-year-old, otherwise-healthy female—am justified in taking 10 pills a day. I believe that the primary motive of these questions is genuine care for my health but, despite this, I am often faced with a condescending, incredulous, even accusatory attitude.

I think people find it difficult to believe that there is no apparent reason why I (as I say, an otherwise-healthy young person) have become so ill. I wonder if, as well as concern for me, it fills people with a kind of existential fear of the idea that “this could happen to anyone, at any time”. I think people try to find a gap in my knowledge, or attempts to find treatment, or indeed a reason why I may have brought this upon myself. I have frequently heard the following:

…“Surely you can’t be doing your very best to cure yourself. You’re so young!”

…“It’s been going on for so long! There must be some mistake.”

…“Have they tested for everything?”

…“Do you eat healthily?”

…“Do you practise unclean sex or masturbation?”

…“Have you tried naturopathic remedies? … Yoga? … Meditation?”

…“Have you cut out meat, dairy, wheat, gluten, sugar, preservatives, corn, fun?”

…“Have you spoken to a shaman?”

…“Have you considered fruitarianism?”

…“If only you would give the Norse God of War a chance to work on your case!”

(OK, I have exaggerated with the last two examples on that list…but only those!)

Oh, also…“Don’t you realise that antibiotics will decimate your ‘good’ gut bacteria, cause irreparable organ damage, and lead to antibiotic-resistant bacteria which will be a threat to you and others in the future…??”

Therefore, I generally want to reassure the listener/inquisitor that I’ve researched all my options thoroughly, that I am aware of the risks, and that I’m taking the best available course.

And I do believe that I’m in the best position that I could be! I have access to treatment from the LUTS clinic in London (previously run by the incredible, brave, patient and kind Professor Malone-Lee), and I do think that this is the best choice available for someone in my position. I am extremely lucky to now be under the care of consultant urogynaecologist Dr Rajvinder Khasriya (PhD MRCOG), and I’m genuinely eternally grateful to everyone at the LUTS clinic for allowing me to live my life as I can today!

However, although I am infinitely thankful to this clinic, I must confess that as each year goes by—and I’ve now been ill for the majority of my 20s—my positivity is increasingly forced.

How my illness began

I had one bout of ‘honeymoon cystitis’ the first time I had sex.  Then nothing until I was about age 20 (year 2010).  I’d got a new boyfriend, and I thought things were pretty great…apart from the fact that every time we had sex (Every. Single. Time.) I developed UTI/cystitis symptoms within about 24 hours. We’re talking the classic urgency/frequency, burning and pain when urinating…well, pain all the time.  Nothing brought relief other than spending the following day on the toilet, literally hours of just sitting there, usually crying, cuddling a hot water bottle and popping ibuprofen like Smarties.

The first few times that I went to my GP in this state (I remember that it was difficult to leave the toilet for long enough to just sit in the doctor’s waiting room) they would give me the standard short course of antibiotics based on my symptoms alone. My symptoms would generally disappear after the antibiotics, but then return the next time I had sex. However, after probably the fourth or fifth episode, doctors refused to give me antibiotics as I couldn’t produce a positive urine dipstick test, telling me that it couldn’t be an infection.

I didn’t know why this was, but I was obviously desperate for relief, so I would go to various walk-in centres around my city and tell them  it was the first time I’d had these symptoms in order to get another antibiotic prescription and feel better again.

I never got a clear explanation from a doctor about why I might have UTI symptoms without an infection, and nothing changed until the relationship ended later the same year. Without the relationship, without sex, my bladder went back to being a happy chappy!

A cystoscopy resulted in a turn for the worse 

During my first year of university (age 21) I started another relationship… and my mortal bladder-based enemy returned! The same story as before, sex = cystitis! This time I had a more interested GP and, although my dipstick tests were consistently negative, he gave me a low-dose (prophylactic) antibiotic to take immediately after sex, but this did nothing for me. Following this, he referred me to a really lovely urologist.

Talking with Lovely Urologist (LU) was the first time that I felt really listened to. We talked about my bladder, Game of Thrones, yoga, and he gently suggested the possibility of interstitial cystitis (IC).   I’d already read about IC online but put it to the back of my mind because I felt that I didn’t fit the profile because my symptoms appeared exclusively after intercourse.  Also because, obviously, the idea of having an incurable pain disorder petrified me!

LU performed a cystoscopy and urethral dilation on me under general anaesthetic. He explained that the cystoscopy looked for physical abnormalities or Hunner’s ulcers within the bladder; whilst the dilation “’popped’ peri-urethral cells” (which he said sometimes relieves pain in sufferers).

It hurt to pee the first time following the procedure, but after that I had no problems! I even had sex I think two or three times with no issues! It was a very happy time, not least because I was on a work placement in sunny Spain! I was in a lovely climate, I wasn’t in pain, and I thought that the nightmare had actually been cured by this surgery! However, on the fourth or fifth time in bed with my partner, around three months after the procedure, the cystitis symptoms returned.  And from this time on, at age 22, it never really left me.

After I had sex that time, I had the familiar acute flare—sobbing on the toilet, pissing razor blades, the usual—and the symptoms dissipated over the next few days, but they never fully disappeared as they used to.  I was never prescribed antibiotics at this point because the dipsticks were ‘negative’.

Whereas previously I would have acute urethral burning, frequency, urgency, and bladder pain for a few days following sex; I now had these symptoms on a much lower level—but constantly. My daily frequency and urgency was much higher than what had been ‘normal’ for me pre-cystoscopy, and I now had/still have some lower level of bladder and urethral pain on a daily basis.

I returned to hospital to see LU and tell him what had happened. I felt sure this change in symptoms was a result of the cystoscopy and dilation, as it was so distinct and nothing else had changed in terms of my body/sexual behaviour. However, LU said this was impossible, and that this was unfortunately probably just the progression of IC. The cystoscopy showed no abnormalities or ulcers to confirm IC, but he said that my symptoms—in the absence of UTI—suggested an IC diagnosis should be given anyway as a “diagnosis of elimination”.

I was resistant to accepting an IC diagnosis because (apart from the fear of incurability!) it just didn’t make logical sense to me. My ‘honeymoon cystitis’ had only changed to this constant IC-like state following an invasive surgical procedure and—if I truly had never had a UTI—why did my body respond so clearly to antibiotics and D Mannose?

The ‘Professor’s Fan Club’

It was during this time that I really started searching online for answers.  I came across the term “chronic embedded UTI”, and read about the long-term antibiotic treatment offered by Professor Malone-Lee’s clinic in London for patients with symptoms and medical histories like mine.  I presented my findings to LU, and told him that the Professor and his treatment seemed to have quite a fan club of previously “incurable” IC patients, who had seen great improvements with his regime.

LU seemed pretty amused by this, and actually sent a referral request to the Professor saying that “I have a young lady here in my clinic who says she’s joined your fan club! Will you accept a referral from out of area?”

At my appointment with the Professor I was diagnosed with a chronic UTI based on my epithelial and white blood cells counts. To be specific, he described my infection as a “humdinger!”. Although I was still in a lot of pain in that moment, I remember the feeling of palpable relief in my body, just at being believed and diagnosed. I remember him saying “I’m not surprised you’re in pain!”. It was honestly such a significant moment for me, I just broke down in tears.  I’ve now been on long-term antibiotic treatment for about five years (since 16 January 2014)

It’s honestly difficult to say how my experience has been because there have been constant ups and downs, and it’s all a blur now. I do remember that I actually got quite a lot worse at the beginning (well, within the first year) of the treatment. I remember feeling despairing in the flat I lived in at university, not knowing if I could ‘make it’ on the 20-minute walk to the city centre, between going to pee at home and arriving at the nearest public toilet. In that flat I also kept a bucket in my room to wee in when my flatmate took a shower and I simply could not wait for the bathroom.

My urinary frequency was awful that first year.  I would use the bathroom about 20 times a night, and I know that I wrote a significant portion of my dissertation (a study into ‘the lived experience of individuals with interstitial cystitis’) whilst sat on the loo! Quite appropriately.

For me, the psychological and social impact of the illness has always been worse than the physical effects.  Most significantly, not being able to socialise or attend work/lectures due to the sleep deprivation from nocturia. Also, not being able to drink alcohol or caffeine socially and having to schedule (or decline) social interactions based on proximity to a bathroom. I used to love going hiking and camping, but the pain and frequency from my bladder made that simply unthinkable for many, many years. I always had, and still have, overwhelming thoughts of “why has this happened to me? “What should I be doing?” and— my least favourite—“if I’m like this in my 20s, what on earth does my future look like?”

Recovery road

THANKFULLY, I can say that I’ve regained a LOT of control and social freedom during the years of treatment. I now have many days in a week without any pain at all! Which is just wonderful.  It’s amazing how different life looks when nothing is hurting you constantly! I still have high daytime frequency, but the nocturia has reduced significantly, so I’m able to sleep for enough hours to allow me to ‘function normally’…or at least appear to do so!

My symptoms are greatly reduced, but not gone by any means. Any time that I have sexual contact (which really isn’t often due to my conditioned fear-of-pain response!) I live in fear of horribly increased symptoms for the next few days.  Sometimes they come, and sometimes they don’t, it’s 50/50 now.

I would say that I’ve never had a ‘normal’ sexual relationship since age 20. I have to explain to each new boyfriend that sex is a huge issue for me, and that anything of that nature is going to be pretty infrequent, due equally to the pain it can cause me, and the fear of that pain causing me to back away from sex to begin with. If ‘the act’ does occur, it needs to be followed by me running desperately for my D Mannose like an addict, and immediately heading for a shower.  So you can forget cuddling or pillow talk! I can enjoy sex, but between the pain during and after, and fear thereof, it’s ultimately just not worth it most of the time.  Perhaps I should just straight-up add this to my Tinder profile??  It might save me a lot of time!

However, despite dissatisfaction in that area of my life, Professor Malone-Lee’s chronic UTI treatment truly has allowed me to live my life! Without the antibiotics, I have no doubt I would be disabled by my illness to the point of not being able to work due to pain and sleep deprivation. So, I’m not cured yet, but I am eternally thankful every day for the life that I’m managing to live, as it previously looked impossible!

Will I ever be cured? I don’t know. The Professor told me, before retiring from the NHS,  that I am part of “a difficult subset of patients, who respond particularly slowly to treatment”; however he maintains that I will be cured one day… I bloody hope so!!

My top tips!

I try to be positive and thankful for the life that I am living. Although this is difficult on the bad days, I must remember that there are fewer bad days than there used to be, and I just hope to continue in this direction!

Everyone is different, and some things that have worked for me may not work for others and vice versa. However, based on my personal experience, my “top tips” for anyone in a similar situation would be:

• Do your own research, online and by talking to others, about this illness. Most doctors are great but they are human and this is an emerging area of medicine; they do not know everything.

• Do not bother with millions of expensive supplements, restrictive diet changes, and alternative therapies,  unless you really feel a difference. Apart from D Mannose, I have found all such things to be a waste of money, and I found the ‘IC diet’ to be so restrictive that it caused me anxiety and stress trying to follow it.

• Trust in Professor Malone-Lee’s work and have patience with the treatment. Trust equally in the wonderful team at the LUTS clinic in London.

• Above all, trust in yourself! This isn’t in your head, it’s in your bladder!!

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.

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The post Angie’s Chronic UTI Story appeared first on Chronic UTI Australia.

Áine started experiencing recurrent urinary tract infections (UTIs) at the age of 12.  As she grew older, her recurrent UTIs became more frequent.  She always responded to antibiotic treatment, but sometimes she would need a repeat course to fully clear her symptoms.   In her early 30s, she came down with UTI  that didn’t clear up with the usual treatment.  After a year of suffering persistent and painful UTI symptoms, she was diagnosed with interstitial cystitis (IC) and advised to try and manage her symptoms through diet changes.  Another year on, Áine discovered her diagnosis had been wrong and was diagnosed with a chronic UTI and endometriosis.  After being prescribed appropriate antibiotic treatment targeting her embedded infection, and having a laparoscopic excision of the endometriosis, she fully recovered in 12 months.

My recurrent UTIs started at the age of 12

I’m 37 years old and I’m from Northern Ireland.  I had my first urinary tract infection (UTI) when I was around 12 years old.  After that, I would get them maybe once every year or two back then.  I remember feeling different from anyone else my age because I was getting UTIs more than anyone else I knew.

This continued all through my school years and into my adult life.  As an adult, I was getting UTIs more frequently than anyone I spoke to—from friends to work colleagues.  I knew if this wasn’t normal for other people, this was my normal.  But I realised there was something wrong with having UTIs all the time.  I asked doctors why I was getting them and they would fob me off with something ridiculous.  The doctors were never really helpful.  They were happy to give me short courses of antibiotics for three to five days, the odd time I’d get a seven-day course.  If my infection was really bad, I’d get a follow-up course of another seven days, so about two weeks’ in total. I always asked why I kept getting these infections and could we get to the bottom of it.  The doctors were never interested in helping me with this.

Short-course antibiotics stopped working and my UTI wouldn’t clear

Fast forward to four years ago in January 2015.  I had just broken up with my long-term fiancé of six years.  I had moved back into my parents’ home again.  I was severely stressed out and in a bad place, mentally.  I was working as a care worker in the community looking after elderly people in their own homes.  It was a tough job.  I took a UTI that was pretty bad.  Usually a seven-day course of antibiotics, or sometimes with a repeat seven-day course, would do the trick.  But after the two-week treatment, it was slightly better, but not much.  It was still there.

For the next three weeks, on my good days I felt the symptoms lingering in the background.  When I had a bad day, I had to take off work.  I had developed pelvic pain, urinary urgency and a feeling of bladder pressure that made me want to go to the toilet, but I only had small amounts passing when I did go, followed by severe burning.  When I was bad, I would sometimes see traces of blood when I wiped.

A pattern developed over the next three years.  I would feel the symptoms coming on, so I would go to the treatment room in the doctors’ surgery.  They would test my urine and there would be a 50/50 chance if the dipstick showed up anything.  Most of the time it would be negative.  They would send me home saying it was cystitis, not an infection.  I would get worse and worse, so I would go back three days later.  Then everything would show up on the dipstick to indicate there was an infection, including blood. I would be issued antibiotics for maybe seven days.  If it was still there after that week, they would give me another course of antibiotics for five to seven days.  It became common that after I finished the antibiotics, around three to five weeks later I would get bad UTI symptoms all over again.  And this cycle continued.

After two investigative cystoscopies I was diagnosed with interstitial cystitis (IC)

I decided enough was enough.  At the end of December 2015, I asked to be referred to a urologist.  I saw the first urologist consultant in February 2016.  He brought me in for a cystoscopy (where they insert a small camera into your bladder through your urethra).  I was awake for this procedure.  It was very uncomfortable.  He said my bladder was good and healthy and appeared to be nice and pink.  He told me to look at the screen myself.   I looked and it did look healthy to me, too.  When I went home I was very upset.  If the doctors said there was nothing wrong with me, why was I feeling so bad with bladder symptoms every day for the past year?  This wasn’t normal.  I felt I was let down by the system.  I know my own body and I knew something wasn’t right, even if the doctor told me everything was ok.

I went back to my GP and asked to be referred to another consultant for a second opinion.  In May 2016 I went to see one of the best urologists in my local hospital.  By this stage, I was working in a hospital and this doctor came highly recommended by an auxiliary nurse I worked with.  I thought this was going to be great—he’s the best around, maybe he can fix me.

I continued to work despite my constant symptoms.  Some days were worse than others.  I did miss quite a few days of work being sick when my bladder was especially bad.  I went to see the new urologist and he wanted to perform another cystoscopy because he needed to see inside my bladder for himself.  I agreed.  This time the procedure would be performed under a general anaesthetic.  I thought this was strange because the last time I was awake.  He said we may have to do a bladder stretch (hydrodistension) because I had told him when my symptoms were bad, I could only empty a little at a time in the toilet.  But I was able to go to the toilet normally, with a good flow, when I was having good days.  So, I didn’t know why he was going to stretch my bladder.  At this point I was unsure what the procedure was.  Like I said before, he was considered the best urologist in the area, so I trusted his knowledge and experience.

I went into hospital this time for a procedure—not to go to work.  After the procedure, I was back in the ward and I was in pain.  It took me a few hours before I could urinate.  When I did, it was hell.  I was literally screaming when I passed urine for the first time.  There was blood, which I was told was to be expected.  My consultant came back to see me that afternoon and said I had interstitial cystitis (IC).  He handed me a print-out of the foods and drinks I couldn’t have and he discharged me.

Over the next few days to a week, I felt very down.  I was still in a lot of pain.  I was trying to get my head around my this.  The more research I did, the more my story didn’t add up to the IC diagnosis he’d given me.  Some of my symptoms were similar, but I had seen inside my bladder on the first screen and it looked healthy.  How could I have IC?  I started joining online IC support groups to compare stories and ask for advice.  It took me four months before I started to feel a bit better after the second cystoscopy.  That procedure had made my symptoms far worse.

I learned about chronic UTI in an IC support group

I was approached by a lady in one of the IC groups.  She told me about a professor in London who specialised in urinary tract infections and other bladder related symptoms. She said a lot of people she knew had been misdiagnosed with IC when what they had turned out to be an embedded bladder infection.  So, I joined one of the online chronic UTI groups and I read other people’s stories.  The more I read these stories, it validated to me that they sounded just like me.  It was like reading my own story.  The typical IC symptoms didn’t fit with me, but the embedded UTI symptoms did.  This spurred me on.  I knew I was on the right path now.

There was one problem though.  In December 2016, I injured my back.  I didn’t know what I had done, but I knew it was serious.  I was doing big shifts at work and my body was still battling the chronic UTI.  I was also doing HiiT training at the gym, which was intense.  I found out in May 2017, after a private MRI scan, that I had a bulging disc and sciatica.  My job was very physical, so I had to give that up.  So now my problem was I had no income.  How could I travel to London to see the professor?  I waited for some benefits to come in and eventually I saw him in March 2018.

Endometriosis was also part of my puzzle

In Feb 2018, about 3 weeks before my appointment with the Professor, I had been feeling unwell with other symptoms and I didn’t know what it was. My periods had stopped for two years.  I’d had a coil removed and just assumed it took time for my cycle come back again, so I didn’t think anything was wrong. But other symptoms started, and they got worse over the last year. I had severe abdominal bloating, nausea, reflux so I was bringing up my food, dull abdominal pain and the odd time where it was severe abdominal pain to the point I couldn’t move, but that only last for half an hour at most.

I had pelvic pain and the bladder issues were still bad. And little did I know that symptoms from different illnesses can overlap. So, you can have the same symptoms, but you could have two or three different conditions going on at the same time. This is what was going on with me but at the time I didn’t know it.

I explained my symptoms to a friend.  She thought it sounded like endometriosis because she had been diagnosed with it and had surgery years before. I had never even heard of it before. I had to Google it later that night. And when I read the symptoms, I had most of them. I booked an app with my doctors and she examined me. She didn’t think I had endometriosis but agreed to refer me to a specialist. I decided to see the specialist under my private health insurance and so I was seen to pretty quickly.  I saw the specialist in the first week of February and my surgery was scheduled in five days’ time.  When I woke after the procedure, he said I had endometriosis on my bladder and that I had adhesions on my bowel.  He’d been able to remove it all.  Three weeks later I had my first appointment with the UTI specialist (Professor Malone-Lee).

I have other issues, like irritable bowel syndrome (IBS) and intolerance to certain foods.  Plus, I had gained well over a stone from being off work and not being able to exercise.  If some of the tips I had read about in the IC groups helped my bladder while I waited for my appointment, it would be a bonus.  So, I cut out caffeine and switched to decaf tea.  I switched from tap water to bottled water and I never had alcohol.  I had given up alcohol in May 2016 because it was one of my biggest triggers and would flare me badly.  I also gave up fizzy drinks and fruit juices, as these were all bladder triggers.  All these changes made a difference to my symptoms, so I guess I was bladder sensitive where other people weren’t.

Going to London was the best decision I made and the start of something good

Looking back now, all I can say is travelling to London to see the professor was money well spent!  This was the start of something good to happen to me in over three years.  I felt just seeing him had me on the right path.  He put my urine under a microscope in his office and he said I had a “rip roaring infection”.  I laughed at his way with words.  This was also a relief.  Finally, someone who knows what they are talking about.  I always believed I had an infection because I always responded to antibiotics when I was given them.  If I had IC, I wouldn’t have responded that way.

The Professor told me the reason for the pattern of getting UTI symptoms every three to five weeks was because the antibiotics kept the UTI at bay, and when they started to leave my system, the UTI would rear its head again, every time.  It made sense.  He also said I probably had the same UTI all along and it wasn’t multiple new infections.   He said I didn’t need all those invasive procedures I’d been given.  This made me angry with my health service for putting me through this.  I had been suffering from a chronic UTI for three years by the time I finally saw Professor Malone-Lee.   At last, I had a proper diagnosis and I was being prescribed the right treatment for what I had.

Even though my symptoms had improved from changes to my diet before seeing the Professor, his tests showed I still had a bad bladder infection despite feeling a bit better.  He said I was probably between flares at that time and having a ‘quiet’ period. I was started on full-dose Cefalexin, plus Hiprex (methenamine hippurate) twice a day.  I felt better just two weeks into treatment and was pretty much like that for the full year.  In the following March I had a couple of minor flares where I felt twinges, but it only lasted about an hour or so.  In addition to my treatment, I would take bi-carb soda in water and two strong pain killers and the symptoms went away.

During my treatment with the Professor, I went to see another UTI specialist in November 2018.    I was curious for a second opinion because I was reluctant to be on long-term antibiotics and I’d heard the other specialist prescribed treatment for six weeks to three months at a time.  He used a different test to identify bacteria and his results said I couldn’t be on the antibiotic I was currently taking.  This was confusing, as this antibiotic was definitely working for me.  I spoke to the Professor and he said I must stay under the care of only one consultant at a time.  He explained why he didn’t agree with the test (broth culture) I’d had at the other clinic.  He said his team’s research has shown these tests can grow many bacteria found in the bladder, even good bacteria not responsible for the infection.  This means the results can mislead treatment.   The Professor’s treatment protocol goes by the patient’s symptoms as well as looking at fresh, unspun urine under a microscope to look for infection signals.  He has been specialising in this for 37 years, which is the same amount of time I have been alive!  I decided to stick with his knowledge and experience and stayed under his care.

I am 100 percent symptom and antibiotic free after 12 months of treatment!

My bladder symptoms did improve after the surgery to remove the endometriosis, but I had started treatment for a chronic UTI at the same time, so it very hard to say if the endometriosis on my bladder was causing the pain or the infection. Both Professor and my gynaecologist said the two conditions weren’t connected and I was unfortunate to have both.  I do think the endometriosis found on the outside of my bladder was causing some of my symptoms.  Once I was on the right treatment for the infection, that was helping too. I still believe treating both the conditions helped me recover a lot quicker.

I had a yearly review in March 2019 with my gynaecologist and I’m doing well so far. But I must remember endometriosis is a lifelong condition and it can come back at anytime

I think addressing both conditions was the best decision I ever made!  I was on the right antibiotic from the start of my chronic UTI treatment and I responded quickly.  When I went back to London to see the Professor a year later, he looked at my urine again and my cell counts had gone from being high, to barely anything.  And I no longer had symptoms.    He suggested I trial coming off antibiotics, so I jumped at the chance.  I tapered down the dose over five weeks.  I can now say from April 2019 I am symptom free and antibiotic free!  Things are going well and I’m even able to have alcohol again (which I’d quit in May 2016).  I’ve had a few trips away with no flares at all.  Fingers crossed it stays this way!

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.

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The post Áine’s Chronic UTI Story appeared first on Chronic UTI Australia.

Mark’s bladder problems began when he was only four.  By the time he was a young adult, an anatomical cause had been identified and surgically corrected, resulting in a new lifestyle of daily self-catherisation.  This is when the constant UTIs began.  For the next 14 years, Mark suffered intermittent and back-to-back UTIs, some testing positive, others not.  He was treated with combinations of short-course and low-dose antibiotics, but his infection returned within days of completing each course.  In his late 30s, Mark’s infection spread and he knew more of the same short-course, low-dose antibiotic treatments would never release him from the ongoing cycle of pain and suffering.  He knew it was time to search for a doctor who was prepared to treat his embedded UTI differently.  Read more about Mark’s incredible journey.

A surgical correction to my bladder was the start of a constant cycle of UTIs

My bladder problems started at the age of four when I began suffering from night-time incontinence.   Though having tried numerous medications, and even counselling, none of these interventions worked and I was always told “you’ll grow out of it” by many a medical professional.

At the age of 18, a urology nurse asked if spina bifida had ever been considered as the root cause of the problem.  Soon after, I was diagnosed with spina bifida, which as a result had caused my bladder to under develop.   Having been referred to a urologist at University College London in 2005, at the age of 25, I had a bladder augmentation.  Though having resolved my incontinence problems, I was left having to self-catheterise for the rest of my life.  This is when my issues of reoccurring UTIs began.

I need to catheterise on average six times a day, leaving me susceptible to UTIs.  So, since 2005 I have had my fair share.  To begin with, these were manageable and easily treated with antibiotics—usually a 7-day course. I would go from one extreme to the other.  I could go a whole year without any UTIs, or I could get one every couple of weeks.

In 2015, I ended up having a urethroplasty, as the constant infections had caused urethral strictures.  Also, the constant use of antibiotics over the previous 14 years has taken its strain on my gut, with bouts of irritable bowel syndrome (IBS) regularly occurring.   I have found reducing gluten and lactose in my diet, along with taking probiotics, aloe vera juice, l-glutamine supplement and, occasionally caprylic acid, has helped considerably with my IBS symptoms.

Doctors treated me with short-course and low-dose antibiotics, but the infections came right back

There have been times when I was showing all the regular symptoms of a UTI—disturbed sleep with vivid dreams, brain fog, lethargy, back ache and generally feeling unwell—only to be told the sample sent for analysis had come back negative.  Yet, I was so sure I had a UTI. Who knows their body better than anyone but yourself? On one of these occasions, when I was left untreated, I ended up in hospital with a kidney infection and sepsis.  All caused by an E. coli bug.

Following the kidney infection and sepsis in 2016, I went a whole year symptom free and then BAM the reoccurring UTIs started—all testing positive for E. coli.   I would be treated with a 7-day course of antibiotics (usually nitrofurantoin) but symptoms would return within a couple days of finishing the course, so then back to the antibiotics, and so on and so on.

My urologist prescribed me a 3-month course of Fosfomycin (one every 10 days), which left me UTI clear for two months, but then the infection returned.  I then returned to the 7-day courses of antibiotics.  But again, within days of finishing the course, the infection kept returning.

My urologist decided to put me on a prophylactic course of low dose nitrofurantoin for three months. Though it kept the infection at bay, within a few days of finishing the course, it came back.  After a 7-day full course, I was then put on a prophylactic course of low dose Cephalexin.  However, though the infection had appeared to be under control and not showing in my urine, the infection had spread to cause acute Epididymo-orchitis (an infection of the testicles).  My doctor prescribed two weeks of Ciprofloxacin to clear it before switching back to the low dose Cephalexin.

The constant infections took a toll on my mental health and I knew I had to find a better answer 

Over the years of constant battle against infection(s), and the symptoms associated, I have suffered with anxiety and depression.  At this point of reoccurring UTIs, my anxiety and depression had increased tenfold.  In my desperate quest to cure this disease, I decided to research medical professionals who specialise in lower UTIs.

Through searching the internet and finding support groups online, I came across a Professor Malone-Lee.   His methods appeared unconventional compared to all the other doctors and consultants, but I thought “what have I got to lose?!”.  Plus, a lot of UTI sufferers were singing his praises.   I made a private appointment to see him, and thankfully through a cancellation I was able to see him within a few days.

The Professor asked me about my history and the symptoms I had been showing.  He also checked a fresh urine sample under the microscope, which showed a high count of white blood cells (pyuria).   Based on his test and the symptoms I had been showing, he told me I had an embedded urinary infection.  He explained to me through diagrams what an embedded UTI was and how a long course of antibiotics and Hiprex is required to treat it.   This all made perfect sense and it was a great relief to finally speak to a consultant who understood what I was going through.   I came out of the appointment feeling confident I could now get this debilitating illness under control and hopefully cured!

Long-term antibiotic treatment has significantly improved my quality of life

I have been on the Professor’s treatment program for nine months now.  Though the long-term use of antibiotics has taken a bit of a toll, tiredness mainly, this is the best I have felt in years! I have had the odd flare, but this is to be expected and only lasts a few days.  Along with the antibiotics and Hiprex, I also take D-Mannose (once in the morning and once before bed) to help things along, particularly as it appears to be an E. coli bug causing the problems.

Hopefully there is an end in sight.  My white cell counts are considerably lower than when I first met the Professor.  However, my last count had raised slightly, which the Professor described as reaching a plateau.  My antibiotics have been increased in order to hopefully zap the embedded UTI once and for all.

I am so grateful for the Professor and his ‘unconventional’ methods, which have given me a large part of my life back.

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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.

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The post Mark’s Chronic UTI Story appeared first on Chronic UTI Australia.

Jessica was 25 when she felt UTI symptoms come on suddenly. A visit to the doctor and a dipstick test confirmed there was no infection and she was sent home. Her urinary symptoms persisted and were getting worse, yet repeat tests said there was no infection.  Over two years, Jessica was sent from doctor to doctor to find out what was wrong. She was diagnosed with interstitial cystitis (IC), endometriosis and depression.  She was offered procedures that only made her worse. Being prescribed even more medications, Jessica decided it was time to act on her original instinct that she had an infection.  After pursuing a different type of test, it turned out that not only did she have an embedded bladder infection, she was also suffering from chronic Lyme disease. Read how Jessica went from rock bottom to gradually working her way back to good health and a normal life.

Imagine every second of your life feeling like your bladder will burst

Can you imagine how it would feel to not be able to experience bladder relief? You go about your business the same way anyone else does, but when you’re done you realise you feel no different than had you not used the bathroom in the first place. You’re still bursting. Your anxiety goes through the roof out of fear of an ‘accident’.  You can’t think clearly or enjoy activities because your brain is only capable of focusing on this immediate human need. To top it all off, bladder issues are a taboo subject and as a result you’re forced to hide your desperation from the outside world. Productivity suffers, relationships become strained and mental health deteriorates.

This was my life for years. Day after day I waited for the moment when I would finally feel relief. And while I was waiting, I literally forgot what it felt like to not have a bursting bladder. My symptoms included frequency, nocturia (the need to urinate throughout the night), bloating, slight pelvic pain, and most mentally detrimental, the unrelenting urge to urinate. I never experienced flares and I couldn’t comprehend what other women experienced when they referred to a flare.

My whole life had become one big flare.  It controlled my life. You may be picturing an older woman describing these symptoms, but the reality is that I was only 25-years-old.

My UTI come on suddenly but the tests said there was no infection

The infection came on over a 24-hour period in 2015. I visited doctor after doctor, who all performed an in-office dipstick test and informed me that I was ‘fine’—I did not have any bacteria present in my urine. I had dealt with a significant health crisis six years prior.  I had since fought with all my being to adapt to that health challenge and create a life of normalcy that others so frequently take for granted. Yet, over the span of five months, my dream life of normalcy crumbled around me. Everything that I had fought so hard to achieve, quickly vanished. I dropped out of my Bachelors of Social Work program, quit a job I adored and became a shell of my former self.

Along came the diagnosis of interstitial cystitis, endometriosis and depression

If you’re dealing with a chronic UTI yourself, or have been diagnosed with Interstitial Cystitis (IC), then you know how the next part of my story goes. I quickly found myself lost in a community of medical professionals unwilling to think outside the box and willfully ignorant of a patient’s desperate screams for help. I sought care from the following type of professionals, some of who were well intentioned but only one who provided successful treatment for my infection: an urgent care clinic, three separate urologists, one gynecologist, an internal massage therapist, an inpatient mental health facility, and ultimately Ruth Kriz, APRN who gave me my life back.

All three urologists quickly dismissed the idea of an infection because every time a dipstick test was performed it showed negative.  All three were quick to label me as having IC without performing any further diagnostic tests. I then underwent laparoscopic excision for endometriosis performed by the gynecologist. He assured me that even though the endometrial tissue was only found on my uterus—not on my bladder—my symptoms would resolve. They didn’t. I had been given hope only to fall from hopefulness once again; and I fell hard. Each time my hopes were crushed, I found myself sinking further into a severe depressive state until I reached what I thought was my point-of-no-return. I sought the help of mental health professionals for the first time in my life.

After more invasive procedures, I wanted better answers for my declining health

Although I was emotionally and mentally exhausted, I continued to pursue treatment. I knew with everything I was that I must have an infection…but I was too weak to stand up to the medical professionals around me, and I didn’t have any data to support my hypothesis at the time. I underwent a urethral dilation and cystoscopy with hydrodistension surgery. This stretches the bladder and urethra and I was told this would resolve my symptoms. It didn’t. It left me in more pain and discomfort than before. I was on more medications than I can remember, none of which helped and some which made the symptoms worse. It was a guessing game for all involved and I was the only one with anything at stake.

The urologists told me things such as, “this is just like having blue or brown eyes; you were destined to have it” and “you’re young, don’t go killing yourself over this.” These are not statements a trained professional should make to a patient with no history of depression, yet experiencing severe suicidal ideation solely due to this condition. I was in the process of scheduling multiple surgeries to have a device implanted in my lower back which would influence the nerves that lead to the bladder and may help my symptoms. It was then that I realised enough was enough. I finally woke up and decided to take control of the situation. I refused to live a life that was ‘destined’ to include this condition…and my research began.

My hunch that I had an infection was confirmed

My research led me to bacteria. I had considered a bacterial cause from day one, but when the professionals told me it wasn’t a factor, I was naive and believed them. I paid out of pocket and ordered a broth culture from United Medical Laboratories in Virginia. The results showed atypical bacteria in the sample. I cried with joy! After almost two years of suffering and no professional being able to provide effective care, I had evidence of my true condition. I had ‘something’ to treat and that knowledge alone allowed my mental state to improve.

Upon showing this to my urologist, she agreed to give me a short course of antibiotics, but insisted the bacteria was a coincidence. Upon completion of the antibiotics and with symptoms still present, I pressured my urologist to order a broth culture through her lab. She obliged but was still insistent the culture would be negative. The second report showed loads of bacteria present. At this point I knew this was out of the urologist’s depth and I immediately discontinued care and contacted Ruth Kriz, APRN.

Other alarming symptoms were taking over my body and my mind:  I had Lyme Disease

Around this time, I noticed other areas of my health beginning to deteriorate. The paralysis and seizure disorder that I once had under control began to make its way into my life again. I also developed neurological and cardiac symptoms that I had never experienced before: cognitive dysfunction, inability to follow simple conversations, constant dizziness, tachycardia, arrhythmias, electrical sensations pulsing through my body, migraines, vomiting and muscle weakness, just to name the most prominent. In the year I had spent researching Ruth prior to contacting her, I recognised that she seemed to consider the whole body when assessing her patients. Little did I know, by contacting her for the purpose of my bladder I was unintentionally taking steps to improve my health in its entirety.

After making that initial phone call to Ruth, everything seemed to run smoothly. Ruth not only reviewed my broth culture results and treated accordingly, she ordered labs which provided deep insight into the overall state of my health. I discovered that my bladder wasn’t infected overnight, and the infection wasn’t a coincidence. I received further lab results which showed evidence of tick infections, specifically Borreliosis (Lyme Disease) and Babesiosis. I learned that these syphilis-like bacteria burrow deep into the bones, tissues and organs of the body and wreak havoc. The immune system becomes suppressed and bacteria that would normally be flushed out naturally are able to take hold and multiply. Babesiosis specifically makes a home in the bladder. This one significant piece of the puzzle revealed treatment possibilities for all my debilitating symptoms.

How I have worked to slowly regain my health

I currently complete a urine test with Microgen DX* on a regular five to six-week basis. There it is analysed using DNA sequencing. This is an advanced method of testing that can identify over 30,000 species of bacteria, and any US physician is able to become a participant. We then treat with the appropriate oral or catheter instilled antibiotics. The bladder biome in a chronic UTI patient can be metaphorically compared to an onion, in that we have to peel away the layers in order to get to the true culprit in the middle. With every DNA test we complete, I become closer to the underlying bacteria that caused this story to begin.

I first noticed a change in my symptoms four months into treatment. I developed pelvic and urethral pain. Pain may not sound like an improvement to some, but after 20 months of consistent symptoms, the pain was a period of respite simply because it was different. Eight months into my treatment I noticed the biggest shift: I finally experienced relief after urinating! The relief would only last 5-10 minutes, but it was enough to allow me to clear my mind for a few minutes and, most importantly, know that I was truly making progress, however slow it may be. The relief time gradually increased, and I now experience one to three hours without being aware of my bladder. I have hit a couple plateaus in my treatment, and with each plateau we reassess. Not only do we analyse what is occurring in the bladder itself, but the rest of my body and immune system as well. As I make progress or backtrack in my tick infection treatment, my bladder responds in a parallel manner. When my Lyme symptoms flare up, my bladder follows right along. As the Lyme improves, the bladder follows suit.

I have been in treatment with Ruth for just over two years now and in that time I’ve gained my life back. My bladder no longer controls my mind, my actions or my lifestyle. Most days it hardly crosses my mind. I am still unable to enroll in school or work, but that is because of the effects Lyme disease has had on my paralysis disorder, not as a result of my chronic UTI. I am now able to travel in cars or planes and truly enjoy my time with my friends and family while completely forgetting about my bladder. I run errands, eat how I’d like, explore new destinations and even go to locations where I’m uncertain of access to a bathroom. My bladder is 80 percent improved and as we tackle not only the urinary tract infection, but the tick infections as well, I continue to make progress. I am forever grateful for Ruth and her dedication. Even as she approaches retirement, she continues to make headway by educating other professionals nationwide so more individuals suffering have access to proper care.

I have many regrets in my journey, but I can trace them all back to one common mistake: ignoring my instincts. I went against my instincts of a bacterial infection multiple times. As a result, I was denied proper care for almost two years. If I could go back in time, you would be reading a much shorter story.

*Note: Microgen DX is a laboratory located in the United States and kit orders require the signature of a Microgen DX associated physician. Please seek treatment from a professional educated in the treatment of chronic UTIs and interpretation of advanced DNA testing before utilising this resource.

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