Uromune, the UTI Vaccine That Changed My Life

Uromune is a vaccine for urinary tract infections (UTI), and it saved me from a lifetime of chronic urinary symptoms. But before I got to experience freedom from chronic UTIs, I spent most of my life plagued by pain and trying every solution under the sun. Hopefully, my story can help you on your healing journey.

Core-Memories of Bladder Pain

The first memory I have of dealing with a bladder issue: I was five years old, sitting on the toilet with my mum next to me. I was running a cup of ice-cold water over my vulva while I had a wee, trying to mute the pain of what was the beginning of my UTI journey.

When I was 9, I was in a professional stage show where I spent the entire opening act frozen in one pose because of the pain this bladder issue was causing. The pain stuck around for a year. An entire year! For a 9-year-old child! I was stuck using nappies to sleep because I constantly needed to wee yet couldn’t relax enough to go on the toilet. I was only relaxed enough to wee in bed. And when I went on a sleepaway school trip, I had to wear nappies at night. I was embarrassed and hoped this was something that I would grow out of.

As a child, I didn’t have the understanding or language to describe what was going on with me. The pain was, and still can be, very hard to articulate. I didn’t think there was something seriously wrong. And my mum thought it was something that would pass. Neither of us had any idea what a UTI was or that there was any treatment option for it, like Uromune.

After a year of nappies and my condition not getting any better, I finally went to see a doctor for the first time. My general practitioner (GP) prescribed a bladder relaxant for two weeks. It worked, and for a long time after, I was completely back to normal. Was a bladder relaxant appropriate for my age? Should I have been given this medication much earlier? 

Misleading UTI Remedies and Missed Opportunities

My bladder understudied for a while and didn’t get a leading role again until I started having sex. I don’t remember my first diagnosed UTI, nor do I remember the first time I was prescribed a three-day course of antibiotics. But I do remember the NHS website that told me it would be easy to get a 3-day course again if you’d previously been prescribed one. The website did not mention any other treatment options like the Uromune vaccine. 

In hindsight, I feel the system misleads patients. Telling us our condition is highly regular and normal and will be fixed with their protocol of short antibiotic courses—done deal. But really, the quick-fix solution resulted in a course of healthcare that actually prolonged my issues and caused more side effects.

Over time, it was clear that UTIs and bladder issues were health issues that the NHS had one cure-all answer to and didn’t research beyond that. Uromune isn’t even on the public health system’s radar! People with more recurrent issues or chronic issues, like myself, were out of luck. 

I remember the GP appointment where a doctor told me this is “something some women just deal with,” and I should just remember to wee after sex and “get on with it.”

Easy for him to say. My UTIs were periods of time when I was forced to stop everything, sit on towels or the toilet, and drink tons of water until the pain eventually went away. The timeline could vary from three days to a week. I nursed a sodium citrate sachet and generally tried to distract myself instead of googling more remedies. 

My mum floated the idea that it was specific partners causing UTIs. This myth gained traction for a moment as I had no UTIs and lots of sex with my next boyfriend. But suddenly, there was the pain. In hindsight, there was often a period with new sexual partners where I was asymptomatic before regular flare-ups started occurring again. I always waited until the first UTI to tell my partners about my recurrent issues because I hoped maybe this time it would be different. 

It’s hard to admit that the pains you experience are chronic, especially when people tell you it’s all in your head. Healthcare professionals would sometimes dismiss the severity of the pain. Family and friends didn’t understand how debilitating a flare-up is and questioned why I was confined to my room. This felt horrendously isolating and forced me to try and “think the pain away.”

I questioned if I did have just psychological, not physical, pain. I became almost superstitious about telling people about my chronic issues when I was asymptomatic because I felt like that would tempt the problems back. 

But with a new boyfriend came the same problems. I had been suffering from recurrent UTIs for four years, and this was the 3rd partner I considered blaming for post-coital flares. This time, my UTIs sabotaged a holiday, and my boyfriend bought me four new towels to sit on. Sodium citrate sachets continued to do the trick. They would deafen the pain until I could get a new course of antibiotics or at least get to bed. For me, it was 72 hours of excruciating pain where all plans had to be halted. I felt there wasn’t much I could do besides wait it out. I mean, this was “something some women just deal with,” so I didn’t do anything. I simply spent three days in bed several times a year. 

Shout out to my boyfriend, who would play cards with me while I squatted on towels. That was love.

My next boyfriend was at drama school. Every time we had sex, I was getting a UTI. I held off on penetrative sex whenever I knew I didn’t have three days to spare – waiting for the pain to dissipate. The urinary symptoms were much more intense, and I was totally constrained to the bathroom during flares. Once, during tech rehearsal for a play, I stayed in the bathroom with a speaker from the stage until I could hear that I was needed. Then, I would run to the stage, do my part, and run back to the toilet.

My UTIs have kept me from performing on stage, going on holidays, having sex, making it to auditions, being at family Christmas, going on dates, attending school, making it to rehearsals, and generally being present at many points in my life.

Becoming an Expert Myself

A new sex partner and an excruciating UTI on Christmas 2021 changed the course of my care. I admitted to my new partner that I had chronic UTIs, and he encouraged me to get help. I knew he would have empathy for my issues because he was suffering from chronic pain as well. He believed there was a better medical treatment out there for me. 

The pain taking me away from Christmas was a big enough problem to make me realize this wasn’t something I could live with anymore. I wasn’t allowed to choose Christmas; I had to choose my bed. It was the wake-up call I needed that this problem was a huge detriment to my life. I committed the next year to making myself better. To “living a cystitis-free life.” The term “cystitis” was the placeholder term that my family, friends, and I used to talk about my flares up until this point. I wasn’t diagnosed until later in the year with chronic UTI.

The first thing I did was create a tracker and start doing my own research. I listed every possible cause I could think of and started working on corresponding solutions. If my trigger is ‘a’, then ‘b’ is my solution. For example, I thought it could be psychological, so I got a counselor specializing in chronic pain. I thought it could be muscular, so I researched potential pelvic floor specialists near me. I even tracked my underwear material and orange juice consumption. I felt that if I tracked everything I possibly could and took all the information to a doctor, there was no way they wouldn’t be able to help me.

I learned a lot from podcasts. My favorite is Better Health Guy’s podcast episode #158, “Chronic UTIs and Interstitial Cystitis with Ruth Kriz MSN, APRN.” 

I asked my GP for a longer course of an antibiotic that had previously worked for me, something I could take preventatively. I honestly didn’t expect this appointment to go so smoothly. I expected pushback from my GP, but I was determined and firm in my communication. I think that helped. I felt I had the power to ask for what I wanted because I had done the research to back it up. And ultimately, I was paying for more drugs, so there shouldn’t be an issue. The confidence definitely came from educating myself about all possible treatment options and not taking the advice from doctors that it was something I’d “grow out of” or “learn to deal with.”

I left thinking the antibiotics would definitely get me to a functional place. I would take one immediately after sex. This seemed to work and gave me a lot of reassurance moving forward, but it also gave me some anxiety that I was training whatever infection I had to be more resilient. I still had no idea a vaccine like Uromune existed, and neither did any doctor or nurse I had talked to.

Uromune, a Vaccine for UTIs

At some point, I found a list of UK specialists on Chronic UTI Info’s website. Through researching one of them, I discovered Uromune, a vaccine for UTIs. None of my previous doctors had mentioned the existence of a UTI vaccine. 

Uromune is the brand name for a vaccine given to private practice patients in the UK. It’s a pineapple-flavored spray administered sublingually for three months. The vaccine exposes you to the most common UTI-causing bacteria and works to increase your immune response, reducing the risk of developing a UTI in the future. 

It became clear to me that private healthcare was going to be the best way for me to get healed. Taking antibiotics forever didn’t seem great for my long-term health. And not one person within the public health care system even knew of something like Uromune. I talked to my parents, and they told me we also had private health insurance in addition to our public health insurance. This was the first I’d heard of it! I think my parents had it just for emergencies. In the UK, having private health insurance is unusual because most people simply rely on the public health system (NHS).

With this private health insurance, I got access to a specialist in Reading, England, who I knew could prescribe me Uromune. But when I asked her for it, she had never heard of it! The specialist herself was amazed at the idea of Uromune—so amazed that she wanted to inform her mother, who also suffered from UTIs. 

You can imagine my surprise and frustration when, as the patient, I’m teaching a specialist, who I can only see through private health insurance, about a treatment option. 

It’s these amazingly backward stories that make you realize a revolution in UTI treatment is essential. A patient teaching the doctor feels strange to me—like there’s a missing link in the system. 

A Specialist Finally Prescribes Uromune

The specialist referred me to Bristol Urology Associates, a clinic closer to my home. I was a little apprehensive walking into the urologist’s clinic. I was so much younger than all the other patients. I was nervous that either he wasn’t the right doctor to treat me or that I had a debilitating disease far too young in my life. 

It turns out he couldn’t have been more right for me. He collected a urine sample, but, of course, I wasn’t having urinary symptoms at the time. This is often the case with my doctor visits, and part of the frustrations of getting tested and treated. When you’re symptomatic and you need to get immediate treatment – you can’t get an appointment with your specialist. When you have an appointment with your specialist – you aren’t having any issues.

I took the time to show my urologist my whole color-coded spreadsheet and talk about everything I thought was causing my bladder issues. I felt such a need to prove myself in this situation, and it was like this was my moment to get things right – say everything I needed to say and ask every question I ever had. If I got it right, maybe this time I would get the life-changing Uromune prescription.

I put a lot of pressure on myself. Very quickly after I finished speaking, Dr. Whittlestone diagnosed me and began explaining why all of my symptoms were textbook chronic urinary symptoms. I knew the term chronic UTI, but I hadn’t considered that it was what I was dealing with.

He drew diagrams to help me understand my biology and the interaction between different organs, which he used to explain exactly why he felt sex was my consistent trigger. There was one analogy he used to help me understand more about the bacteria growing in my bladder than I ever had, and I’ll share it with you:  

The Jam Analogy

Imagine the walls of your bladder as the two pieces of bread and the bacteria of your specific UTI as the jam. All together, they make a jam sandwich. When the jam is neatly within the bread, you have no symptoms, though the jam (infection) is still there. When you grab the jam sandwich with your hands, pushing the sandwich together, the jam spills out (the bacteria multiply), and your symptoms flare up. 

This made so much sense to me. Before, I couldn’t fathom how I was continually becoming newly infected. Now, I could picture the bacteria sticking around and staying dormant or not multiplying as rapidly. I could imagine how having sex would put pressure on the sandwich (my bladder walls) and spill the jam (causing the bacteria to multiply), forcing me to feel a flare.

He talked me through some potential routes of therapy and explained that usually, his first-line method with his patients is three months of antibiotics followed by three months of none other than Uromune! The UTI vaccine I had been trying to get my hands on! 

I was extremely relieved because my research of other treatment options led me to invasive procedures. But then I thought, “Well, I must have been overreacting; Uromune must be the standard for everyone.” It wasn’t until I started talking about my journey that I realized that was far from the truth. The truth is that not everyone has access to Uromune. It often doesn’t fully alleviate their chronic UTI the way it did for me and only reduces their symptoms.

Dr. Whittlestone and I talked about logistics, as Uromune has to be kept refrigerated, and you have to take it consistently twice a day for three months. I decided a sexless time would be best to minimize the risk of any complications. It just so happened I was going away for work for three months without my partner so this seemed like the best option. I left the first session with a prescription for 90 antibiotic tablets and a newfound hope. I was to come back in three months to get my Uromune vaccine and test my urine to check infection markers (Nitrates) in the urine, and inflammation markers (WBC/RBCs). 

Once, he held my urine test results and told me I had just had a flare. I thought he was a wizard, but he just saw that my white blood cell count was up! I am forever grateful for that first session, and my Dad was so glad that the insurance had led us down the right track. The consultations cost £180 each. I know. And Uromune would be £600. I think the most the insurance ever covered was £80 off the total cost. So, not great and not remotely accessible. I’ve been so privileged to aim for recovery and achieve it within a year. 

Uromune Solved My Symptoms, but I’ll Always Look over My Shoulder

Since completing Uromune, I felt apprehensive but honestly normal again. I’ve had sex whenever without calculating how many faults I could make (like being dehydrated or not immediately peeing after sex) before I would be cursed with another flare-up. 

Then December came, and I had some of the worst pain of my life, followed by some awful urinary symptoms. Turns out my copper birth control coil had moved down in my uterus, causing a change in my vaginal pH balance and mimicking UTI symptoms. I spoke to Dr. Whittlestone, and he reassured me that having antibiotics on standby may be all I needed to move forward. He was right, the symptoms never flared completely, although I was never tested during this time.

This happened again in July, and I was very scared about potentially losing the gains I had made on this illness. However, I did some research into UTIs and copper birth control coils and found that although there is no evidence of correlation (possibly because the research hasn’t been done), there are a lot of people with anecdotal links, and mechanically it makes sense. I was angry that no one had questioned my contraception use, ever. I would advise anyone with chronic UTIs to think about the contraception you use (and lube!). I had my IUD removed and recovered normally from that specific flare. The correlation is not exact, but I am cautious about getting another IUD implanted.

As the system isn’t working, we must make a new one. The other day, we had an email to Live UTI Free from a community member just informing us that UTIs had been discussed in parliament because young girls do not currently have a treatment plan on the NHS, only adults. I was honestly so emotional to receive this email and watch the clip (only 20 seconds). There is real change to be made here for such a debilitating condition, and I want to be alive to see and make that change. I feel strongly that a significant difference can be made in a short time. I don’t want anyone to suffer from UTIs for an entire lifetime ever again.  

While writing this piece, my treatment has changed again. Uromune has kept me symptom-free for 18 months, but I recently had a flare. I saw Dr. Whittlestone and received new medication. Having chronic UTIs will most likely be something I have to manage forever and has indeed changed my whole life. My life now is learning to prioritize my health, which included missing an audition last month. Having a chronic disease means you cannot always push past the pain, and that’s okay. However, with more research and awareness, I hope to see shorter and shorter roads to recovery and easier maintenance for people like me.