I’d suffered from the occasional UTI in the past, and had experienced when it hurts to pee. But something about the UTI I had in October 2019 felt different. Prior to this, life was great. Young, healthy and happy, I took pleasure in my health and fitness, exercised regularly and enjoyed study, work and socializing. My outlook on life was optimistic. I had no idea that chronic illness could rob me off that so quickly. That in desperation I would even consider ending my life.
The UTIs I’d had previously were quickly resolved. It went like this: It hurts to pee, go to the GP, get a script for antibiotics, take the course. No complications, no worries. But this one was painful. The kind of pain that prevents you from sleeping.
- Sleepless Nights and Desperation >>>>
- Deep Pain When it Hurts to Pee >>>>
- COVID-19 Lockdowns Were Almost a Godsend >>>>
- A Concrete Diagnosis >>>>
- A Skilled Team Overseeing my Recovery >>>>
Sleepless Nights and Desperation
One night in desperation, I went to the out of hours doctor but it was so early in the morning that they were closed. A nurse, arriving for her shift, saw me waiting and asked if I was alright. I told her I had a UTI so painful it was preventing me from sleeping, that this time it was way beyond hurting to pee. Taking pity on me, she brought me inside with her and I was seen by a doctor very quickly.
I was given a three day course of antibiotics. My symptoms subsided and I returned to normal life, or so I thought.
Over the next few months, however, the UTI kept returning. One day I would be fine, the next day, it would hurt to pee. I assumed that each bout was a new infection. Each time, I was given the same three day course of antibiotics and sent on my way. This treatment strategy became so natural that, while on a summer travel adventure exploring the North Island of New Zealand with my partner, I would simply purchase the antibiotics from the pharmacy without undertaking a urine culture. I would later learn just how misguided that decision was.
When I returned home, my doctor did a urine culture test. I would later learn that the bacteria detected was very resistant to the antibiotics I’d been using. This time, I was prescribed a five day course of different antibiotics. Things seemed to settle again for a few months.
Deep Pain When it Hurts to Pee
During this time I moved cities and began university study. By March 2020 my UTI symptoms had returned but, this time, the pain emanated from deep within my bladder. I arranged for a doctor’s appointment, but because COVID-19 had just hit it was a phone consultation. The doctor prescribed another course of antibiotics and arranged for me to give a urine sample. This time, the antibiotics did not work. What’s more, my urine culture came back negative, though white blood cells were present indicating inflammation of the kidneys or urinary tract.
The doctor informed me that a negative test indicates there is no infection. I was left stumped.
I told her that I was still in significant pain and experiencing frequency, burning, urgency and a slow light stream. It hurts to pee, I told her. She wondered if my symptoms were due to residual inflammation in my bladder from previous UTIs and advised me to wait two weeks to see if my symptoms resolve naturally.
Two weeks passed in misery. The pain was increasing and, in addition to my regular symptom — it hurts to pee — my urine emitted a strong and unpleasant odor.
I was shivery and extremely unwell. Despite this, my doctor was guided by a test that I now know is highly inaccurate. I literally begged for antibiotics.
She relented and unwittingly prescribed a 12-month course of the antibiotics that the offending bacteria was resistant to. Of course, I still didn’t know that at the time.
COVID-19 Lockdowns Were Almost a Godsend
By this time, COVID-19 lockdowns were in place. I was almost grateful for them. Because of my debilitating symptoms and how much it hurts to pee, I could barely leave the house. Even getting out of bed was difficult. Pain became my normal.
Though my symptoms remained intense, the antibiotics did seem to take the edge off a minuscule amount. For the next two months I was extremely unwell. I visited my doctor several times and she floated the idea that maybe I had Interstitial Cystitis. Still, she looked to my negative test results, believing them over anything I had to say.
Finding a Supportive Community
Feeling helpless, I began researching online and found a number of resources, including Live UTI Free. My discovery was bittersweet.
While I had finally found stories which echoed mine almost word for word, I was also extremely saddened to learn of the enormous number of women suffering as I was.
I joined some Facebook support groups and discovered Dr. Stewart Bundrick, a Louisianan urologist specializing in UTI, who consults with international patients online. Making contact immediately, I joined his three month waiting list. In the meantime, Dr. Bundrick ordered a MicroGenDX test for me which showed a high infection load of resistant Enterococcus and Acinetobacter.
During this time, I became very sick. The extreme pain I was experiencing when it hurts to pee meant that I could barely leave the house. I fell into a deep depression.
In preparation for my appointment with Dr. Bundrick, I requested a copy of my medical records. It was here that I discovered there had been an early detection of Enterococcus with resistance. Despite this, the antibiotic I was most commonly prescribed during my illness was a drug that couldn’t touch this organism.
A Concrete Diagnosis
When I finally met with Dr. Bundrick three months later, he took my history and swiftly diagnosed me with chronic bacterial cystitis. Finally, I had a concrete diagnosis as to why it hurts to pee. When he told me I’d need a 12-month course of strong antibiotics, I worried that my local doctor would refuse to prescribe them. He wrote a letter to my doctor asking that they prescribe the medication and treat me under his guidance.
After a few months of treatment, I had improved, though I still suffered severe flares in which it hurt to pee and I experienced a lot of unpleasant side effects. I even contracted C. diff.
During this time, I discovered a Facebook group discussing bladder fulguration. I spoke with Dr. Bundrick about it, as he had performed fulguration on many of his patients. As a student, however, the cost was prohibitive for me.
I was deflated and contemplated suicide often.
Overwhelmed by Generosity
Though I had mixed feelings about crowdfunding, my partner went ahead and created a GoFundMe page to raise the money for fulguration. I chose to pursue fulguration with a New Zealand urologist I had found via a Facebook group dedicated to bladder fulguration. To my surprise, countless friends, family and even strangers contributed. And although we didn’t raise the full amount required for my surgery, I was overwhelmed by the kindness and generosity.
After almost two years of darkness I had hope again for a pain free future.
On the day of the surgery I was nervous and excited. I’d done enough research to understand that recovery after fulguration isn’t always linear and that a lot of women experience difficulty whilst healing. Still, the tentative hope that I would gain my life back made me persevere. I imagined a life in which it no longer hurts to pee. The nurses and hospital staff were incredibly kind and caring, setting my mind at ease.
A Skilled Team Overseeing my Recovery
In the months following fulguration, I was exhausted and sore. I experienced frequency and urgency and again, the symptom in which it hurts to pee. Was it a new infection or healing pain?
Luckily, a new chronic UTI clinic opened in my city — the only one in New Zealand! — so I had a skilled team overseeing my recovery. A MicroGenDX test revealed Klebsiella again for which I received a four week course of antibiotics.
Despite some minor flares in which it again hurts to pee, by 6-months post-op I was greatly improved. By 12-months I was better still. After three years of almost constantly being on antibiotics, it was time to come off them. And although I was looking forward to rebuilding my microbiome, I was terrified. My symptoms flared initially and I was gutted. I decided to persevere without antibiotics. Instead, I took probiotics and ate lots of prebiotic foods, like vegetables.
Getting my Life Back
Slowly, I got my life back.
I rarely think about my bladder these days. It no longer hurts to pee, the urgency has gone and I can do activities I thought I would never do again. Occasionally, I experience a niggle, but I am comforted to know that a second fulguration is an option if needed.
When I reflect on my experience, I have mixed emotions. I’m grateful to have healed my bladder, but I also feel immense sadness at having suffered C. diff and depression all stemming from UTI.
I lost three years of my life due to this illness — the last three years of my twenties. At the same time though, I’m hopeful for the future.
What I’ve learned is to always trust your gut. Even if your doctor says you’re wrong, you know your body and when something is not right. Never stop advocating for yourself and for better treatment!
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Did you get the fulgaration done with an active infection?