02 Nov Elle’s Chronic UTI StoryReading Time: 13 minutes
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.
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).
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.
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.
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.
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.
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.”
I’m 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 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.
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.