Jessica's Chronic UTI Story - it took 2 years to discover she had a chronic UTI and Lyme disease
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Jessica’s Chronic UTI Story

Jessica’s Chronic UTI Story

Reading Time: 9 minutes

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.

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.

 

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.

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.

 

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.

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.

 

*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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