Ronda’s Story

Arlene Brailey

In November 2018, I underwent laparoscopic surgery to diagnose and treat endometriosis. Sadly, just shy of forty-eight hours following the procedure, I started to suffer from symptoms of a urinary tract infection such as painful urination, smelly / cloudy urine, and blood in urine.

That fateful night, I knew I was in dire straits when I was awoken by a fierce and blazing hot temperature. My body violently erupted into the most horrific and uncontrollable case of the judders, whilst my febrile face ignited into flames! A huge surge of pain raged through every inch of my body, particularly, just below my waist and towards my chest. I was in agony, I had difficulty catching my breath, I honestly believed I was having a heart attack. I became a trifle confused and disorientated, yet, I vividly recall one plaguing thought that still haunts me today, “This is it – I am doing to die,” so young, so unfulfilled, and so tragically.

To my utter dismay, I had contracted a “catheter associated urinary tract infection” which developed into sepsis. As a result, I now suffer from an “antibiotic resistant urinary tract infection”, also known as an “obligate intracellular bacterial infection” because the bacteria keep colonising and my white cell readings fluctuate. Since February 2019 I have been under the care of a specialist and have been prescribed longer-term antibiotics.

I was hospitalised for just under a week which was an extremely harrowing experience. Eventually, during my hospital stay the bacteria of Citrobacter Koseri was isolated in my urine. I was treated with numerous antibiotics which failed to eradicate the source of infection that caused sepsis.

Therefore, I was released from hospital still symptomatic of a urinary tract infection coupled with the unfortunate development of “post sepsis syndrome”. I was utterly traumatised by the whole experience. I was half my body weight and absolutely terrified of a repeat episode of sepsis, and I was in far more pain than I was before the endometriosis surgery.

Following discharge from hospital, my GP prescribed many short “rescue” courses of oral antibiotics which did not kill the infection. And most distressingly, I have continued to suffer – when I urinate it feels like cutting razor blades, my vaginal area feels very sore, I experience right sided groin pain and throbbing, urethral burning, a feeling of muscle contractions, urgency to urinate, at times my urine would feel very hot, my legs swell and ache, a general feeling of unwell, brain fog and trouble focusing. The worst pain I suffer from is shooting pains (like a knife) inside my vagina that would sometimes reduce me to tears, also the pain often wakes me up during the night or I would have no sleep at all which significantly affects my energy levels and mood.

Together with my ongoing medical conditions such as epilepsy, chronic fatigue, fibromyalgia, left temporal lobe cavernoma etc, plus the added burden of post sepsis syndrome and my drug resistant infection, I find it very difficult to cope. I feel like my entire self is constantly under attack, as on a daily basis my body and mind endure so much pain and suffering, and I agonise if I will ever be free of infection and the worry of a repeat episode of sepsis.

I have experienced terrible side effects from taking antibiotics such as my skin felt like it was burning and on fire, including red blisters all over my faces. One particular antibiotic negatively affected my mental health, which made me feel suicidal and depressed.

Daily life for me is a struggle. I feel incredibly unlucky because since my operation I now suffer from near constant pain, immense distress and worry, major disruption to my life, and damage to my mental health, plus I have no idea if my infection will turn into a lifelong battle. I also wonder if antibiotics will sadly remain part of my daily routine. 

My infection and life after sepsis also personally affect my partner – as I depend on her for support in every sense, and without her patience and understanding, I wouldn’t have the courage and mental ability to live with my antibiotic resistant urinary tract infection and the constant worry of sepsis. I must admit that I often feel like a burden as my health very often takes precedence over our lives, which is a struggle for us both.

One of the worst things I have experienced when I told friends, family, and strangers about my ordeal, is that very few understood that a urinary tract infection can affect every aspect of one’s life and can potentially develop into sepsis. I may look perfectly well, but that is not a true reflection of what is going on inside my body and mind. I’m plagued with worry and illness which often makes me feel that my future is very bleak. 

This is a wakeup call for the entire world to be aware of the devastating and deadly impact of antibiotic resistance in our current climate and beyond. This is a global cry of help for governments to finally take responsibility and URGENT action by investing money and resources into developing new antibiotic treatments to save lives and/or to avoid a lifetime of worry and pain that one is constantly subjected to whilst living with an antibiotic resistant infection.

Read more about UTIs here