Finding UTI Relief: A Nine-Year Journey

My search for UTI relief has been a long and mostly ignorant journey. With nine years of experiencing urinary tract infections – I can attest to the fact that ignorance most definitely is not bliss!

Quick Links:

• My Acute UTIs Turn Into Chronic UTIs >>>
• A Visit to the Doctor But No UTI Relief >>>
• Finding UTI Relief Can Be a Long, Non-Linear Journey >>>
• Balancing Life and My Chronic UTI >>>

It Starts With a Home Remedy for Quick UTI Relief

I experienced my first UTI around the age of fifteen. It was incredibly painful and debilitating. I felt intense pain and pressure in my bladder and pelvic area, paired with a constant urge to pee. Yet every time I went to relieve myself, I was overwhelmed with a burning sensation stemming from my bladder and very little urine.

My mother, in a well-meaning but ultimately unhelpful gesture, advised me against taking antibiotics. Mum said that if I drank a teaspoon of baking soda mixed with a glass of water a couple of times a day, the infection would resolve itself. The homemade UTI relief worked. The symptoms completely disappeared within 24 hours.

Baking soda and plenty of water is how I proceeded to treat the two to four acute UTIs I experienced each year for the next nine years. 

In hindsight, I can’t believe that I thought this recurrence of infection was normal. My UTIs were mostly triggered by sexual intercourse. I suppose I just accepted that getting a UTI and experiencing debilitating pain was occasionally an unavoidable side effect of being intimate.

When I was 21 years old, my mother died, leaving me the full-time caretaker of my nine-year-old brother and my grandmother, who had burgeoning dementia. Even before my mother passed, my home life was tumultuous with erratic familial issues. By the time I was 24 years old, my mind and body were totally exhausted. I was used to living in a constant fight-or-flight state. When I think back on these years – I shudder. They were intense, terrifying, frantic, unstable, and utterly draining. 

I’m not surprised that one day, I got a UTI, and despite sticking to my home remedy for relief, the symptoms never went away.

Unlike my acute UTI attacks, these symptoms were not so painful that they debilitated me from doing my daily activities. They were less intense on a moment-by-moment basis but, in their own way, equally as disruptive. These chronic symptoms would fluctuate hourly, so I could never rely on how I would be feeling, and I could never, ever stop thinking about them. At least with the acute attacks after a week or so, there was some relief from the UTIs. I had no idea when this longer-term UTI would go away.

Having just started a new part-time job to fit around my duties parenting my brother, I needed to get on with my life. I tried to ignore my symptoms, and I drank my usual UTI-relieving concoction of baking soda and water, but there was no UTI relief. Several weeks later, I started to worry. Although the sensation was similar, this was unlike any UTI I had experienced. I’d never had a UTI that didn’t fully resolve within a week, and now thoughts about the pain and discomfort would run parallel to every other thing I was doing throughout the day. I was scared. 

For the first time ever, I arranged a consultation with my doctor. She conducted a standard urine dipstick test, which revealed coliform bacteria. I was prescribed a three-day course of antibiotics. However, I now know that this was nowhere near the dosage required to provide UTI relief for the kind of UTI I was experiencing.

I took the course of antibiotics, but my UTI symptoms were not relieved – they stayed the same. I searched different websites, blogs, professional holistic providers, and medical websites for help. Multiple sites mentioned D-mannose, a dietary supplement used for reducing the risk of UTIs caused by E. coli. D-mannose was tricky to find locally and very expensive, but my symptoms were so intense I was willing to do whatever I could to resolve them.

Living with the ever-present pain and discomfort was taking a toll on my personal, social, and work life. I was exhausted, both from being in constant pain and discomfort and from constantly thinking and worrying about it! It was affecting my patience, my concentration, and my sleep. 

One day, during lunch with a friend, I noticed something extraordinary. Although I was focusing on what she was saying, I was simultaneously focusing on the pain in my bladder. 

A Negative UTI Test Despite My Symptoms

About a week later, I returned to my doctor to inform her that the antibiotics she had prescribed for UTI relief had not worked, and I had no change in my symptoms. She did another urine culture, which came up clean. Due to the negative urine test, she said there was nothing she could do except refer me to a urologist on the public waiting list. With that, she sent me home. I now understand that not only can standard urine testing be generally inaccurate but that testing immediately after antibiotic use often renders the urine sterile anyway.

At this point, the pain was excruciating. The symptoms had grown worse, the antibiotics did nothing, and I still had no answers as to the cause of it all. When I called the urologist’s office, they told me the wait time for an appointment would be two years.

Unfortunately, I couldn’t afford to go private. 

I felt incredulous, angry, borderline distraught. I was basically told ”Yep, I hear you say you’re in chronic pain, but… um… nothing we can do. The urologist will call you in 2 years”. It would be three and a half years before I heard back from them.

Reaching Out for Help From Live UTI Free

During this time, I turned to Google. I read countless articles and blogs on UTIs, UTI relief, and female pelvic health topics. Eventually, I found Live UTI Free. I liked Live UTI Free because the articles were scientific, informative, no-nonsense, and yet also comforting and supportive.

Hoping to find help, I wrote a message to Melissa, Live UTI Free’s founder. I can’t remember what I said in my original email, but I felt a HUGE relief when I saw she had replied so quickly and with such kindness. I think this moment was pivotal in my recovery journey and my decision to eventually work with Live UTI Free. That email response changed the course of my illness.

Melissa had sent me a list of clinicians in the UK who treat chronic UTIs. From that list, I found Dr. Cat Anderson at Focus Medical Clinic. Using a urine broth culture, she diagnosed a multi-organism UTI infection. It was with that diagnosis that I finally felt relief, hope, and validation. Finally, my perseverance and research gave way to answers.

I wasn’t going crazy! There was a name for what I was experiencing and medication that could help me! 

Although I won’t lie, when I was told that the only treatment option was long-term antibiotics, I cried. I was concerned about the side effects of taking antibiotics long-term and I worried that I was opening myself up to other health problems, such as gut dysbiosis and recurrent thrush. I believe it’s a failure of the medical system that the gold standard of UTI relief treatment for recurrent or chronic UTI is something that can, itself, cause other health issues.

My journey toward healing has not been a straight one. It took months of high-dose antibiotics before I experienced UTI relief, and my symptoms started to reduce. Then, there were many more months of gradually reducing the dose, only to have to increase it again when my symptoms flared. Though I understand this to be common, each flare is scary. 

I was juggling part-time work, full-time parenting, a turbulent relationship, ignored grief, and life in general. Sometimes, it felt like my chronic UTI was the cherry on top. 

It was a delicate balancing act. I didn’t want to fall apart if there was a flare-up with my UTI or in my life. I needed a way to manage the stress in a healthy way. So, I slowly worked some therapeutic tools into my life. For me, it’s a combination of yoga, journaling, breathwork, meditative visualization practices, and talking to other people who’ve also suffered from or can empathize with the pain of UTIs. 

Experiencing chronic illness has changed who I am. It’s restricted some areas of my life, but it’s also deepened my knowledge of myself and given me positive practices in patience and empathy. I have more empathy for others managing chronic illness. I’m more cautious and restricted in ways that other people my age aren’t around sex, alcohol, eating habits, and general healthy hygiene. My resilience, determination, and patience are at an all-time high. I’ve reassessed physical and emotional boundaries and no longer push past them the way I used to. 

Being on antibiotic treatment has given me my life back. I’m not symptom-free, and I have other health issues I’m still investigating, but I am no longer ruled entirely by my bladder. 

I have so much more freedom day to day again! It’s not the same as before the chronic UTI; I still have to plan toilet trips, have drinks with me, and take supplements that help provide relief from UTI symptoms. But I have a lot more ability to be spontaneous and experience less anxiety when I go out and do things. Sometimes, I even have days where the UTI symptoms are low or almost non-existent.

There are still things I need to investigate and changes I want to make. I’m working with my doctor on a possible endometriosis diagnosis, which could explain some of the more serious symptoms that even the UTI-relieving medications haven’t helped. The testing to find out is something I’ll potentially have to wait years on a waiting list for.

Dealing With Uncertainty

Not having all the answers is hard. It’s frustrating and adds to the anxiety I experience when symptoms flare up. Investigating my health still requires a lot of my time, effort, and money. Seeing pelvic floor physios, nutritionists, endo specialists, etc. It’s tough to visit practitioners continually and requires physical and emotional stamina, which, due to my health issues, I don’t always have! So sometimes it’s a bit of a catch-22. Ultimately, I’m much better than I was, and that helps keep me going. 

If there’s any advice I can give to those with relatable stories, it’s this: 

It’s really important to look after your mental health on this journey. Finding UTI relief can take more time than you’d like. Setbacks are inevitable and can send you into a tailspin, ultimately negatively affecting your physical health. Support in any form that suits you, such as therapy, friends, family, nature, reading, music, etc., is vital in keeping you feeling fit and able to stand strong when you have a dip.

Helping Others Find UTI Relief 

Throughout this process, I kept in touch with Melissa from Live UTI Free. I was supremely grateful for her kind, thorough response when I initially reached out for help. It was so reassuring to get in touch with her occasionally, update her on my progress, and hear about the work Live UTI Free was doing to improve healthcare for women like me. We developed a friendly relationship over three years. 

In the summer of 2022, Melissa and I spoke, and she offered me a role as Live UTI Free’s Irish director. I am excited to help and support this community, become an active voice in patient advocacy, and aid people in finding UTI relief. 

Advocating for women who suffer from this condition is so important to me because I know firsthand how life-altering it can be. The work that Live UTI Free does is invaluable, and I’m pleased that my journey has led me to a point where I can be part of this team that’s dedicated to helping those on journeys like my own.