By Gabrielle Gleeson-Solomon, CEO of Tota
Scientific Review by Dr Nick Parkinson, PhD
What questions to ask about your recurrent UTI.
Burning when you pee. Feeling like you need to go again five minutes after you just went. UTI symptoms after sex that seem to appear almost every time. Or that familiar feeling starting up again a few weeks after you've finished antibiotics.
When a UTI keeps coming back, it can be miserable. The burning, urgency and discomfort are bad enough, without the added frustration of not knowing why it keeps happening or how to stop it.
Maybe every episode has been diagnosed as another UTI. Maybe some tests have come back negative even though you definitely don't feel fine. Maybe antibiotics help, but the symptoms eventually return. Or maybe you're dealing with constant UTI symptoms that never completely disappear.
If this sounds familiar, you're far from unusual. The NHS defines recurrent UTIs as having two UTIs within six months or three within 12 months and advises seeing a GP if you keep getting them.
When you find yourself back in the same place again and again, it can be useful to stop thinking about each episode separately and look at what they might be telling you together.
Here are five questions worth asking.
1. What have my previous tests actually found?
When you've had symptoms before, were you diagnosed based on your symptoms? Did you have a urine dipstick? Was your sample sent to a lab for a urine culture? If it was, did the test identify a particular bacterium?
You don't need to become an expert in urine testing. But it is worth understanding what you've actually been tested for and what the results showed.
A urine culture works by trying to grow bacteria from your sample in a lab. If bacteria grow at certain levels, the lab can identify them and this can help your healthcare professional decide on treatment.
But urine cultures have limitations. Not every bacterium grows well under standard laboratory conditions and bacteria can sometimes be present at levels below the threshold used to report a positive result. That’s one reason a negative urine culture isn’t always the full picture.
If you've had several episodes, look back at your results if you have them. Was an organism identified each time? Was it always the same one? Have you also had negative cultures when you were experiencing symptoms?
You're looking for what you know and what you still don't.
2.Is there a pattern? What could be causing my frequent UTIs?
If the same symptoms keep returning, think about what tends to happen around them.
For some women, the connection is obvious. Symptoms appear a day or two after sex, almost every time. Sexual activity is a recognised risk factor for recurrent UTIs.
But there can be other patterns too.
Do your symptoms appear at a particular point in your menstrual cycle? Did they start after changing contraception? Have they changed during perimenopause or menopause? Do they tend to happen after antibiotics? Do you have vaginal symptoms at the same time?
And pay attention to what happens between episodes. Do you feel completely back to normal, or is there always a little burning, urgency or discomfort hanging around?
You don't need an elaborate spreadsheet. A note on your phone with when symptoms started, what you were experiencing and any obvious triggers can be enough.
It might feel slightly detective-y. That's the point.
A pattern won't necessarily give you the answer, but it can give you and your healthcare professional useful clues about where to look next.
3. Could my previous tests have missed something?
This is worth asking, particularly if you've experienced UTI symptoms but repeatedly had negative test results.
Standard urine cultures aren't designed to find every microorganism that might be present. A urine culture, for example, grows bacteria under specific laboratory conditions to identify those that may be causing an infection. It's an important diagnostic tool, but some microorganisms won't be detected this way.
Dipstick tests are more limited again. They look for chemical signs that can suggest a UTI rather than identifying the bacteria themselves.
This doesn't make either test bad or useless. They're designed to answer particular questions. But if you're repeatedly experiencing symptoms without an explanation, you may want to ask whether there's more to investigate.
This is where a urinary microbiome test could be helpful.
Tota uses DNA sequencing to identify the bacteria, fungi and yeasts present in your urine, looking more broadly than a standard culture is designed to. Your results also show how much of each organism was found, so you can see whether potentially problematic organisms are present at significant levels.
Your vaginal microbiome can be relevant too. The vagina and urinary tract sit very close together and research has found links between the microbial communities living in the two. So if urinary symptoms keep returning, looking at both may provide useful information about what's going on.
It might uncover information relevant to your symptoms that previous testing wasn’t designed to capture and so didn’t find. Or your microbiome may look healthy, suggesting it's worth looking elsewhere for an explanation.
Both are useful things to know.
4. If it isn't an active UTI, what else could be causing my symptoms?
There's another possibility that's equally important: your symptoms might not be caused by a bacterial UTI at all.
Burning, urgency, needing to pee frequently and bladder discomfort aren't exclusive to UTIs. Other conditions affecting the bladder, urinary tract, vagina or surrounding tissues can cause similar symptoms.
This becomes particularly important if you've been treated for an infection and your tests suggest it's gone, but your symptoms haven't.
The American Urological Association's guidelines on recurrent UTIs recommend that when symptoms continue after an infection has cleared, healthcare professionals should investigate other possible causes.
That doesn't mean it's your job to work out what those causes are.
Instead, take the question back to your healthcare professional: “If an active UTI isn't explaining these symptoms, what else should we investigate?”
Sometimes ruling something out is what opens up the next useful line of enquiry.
5. What should I take to my healthcare professional?
By this point, you may have more useful information than you realise.
You might have previous urine test results, a record of which treatments helped and which didn't, a pattern you've noticed in your symptoms and, potentially, more detailed information about your urinary or vaginal microbiome.
Bringing those things together can make it easier to have a more informed conversation about what might be happening and what to do next.
If you've taken a Tota test, you can download or print your report and take it to your healthcare professional. If your results have identified a potentially problematic organism, ask whether it could be contributing to your symptoms and whether treatment is appropriate.
Some useful questions might be:
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Have my previous episodes actually been confirmed as UTIs?
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Have the same organisms been found each time?
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Could the pattern I've noticed in my symptoms be relevant?
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Could anything identified in my Tota results be contributing to my symptoms?
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If an organism has been identified, does it need treating and what treatment would be appropriate?
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If my results don't explain my symptoms, what should we investigate next?
You don't need to arrive with your own diagnosis. The point of having more information is to help you and your healthcare professional ask more specific questions about what might be happening.
We've also put together a separate guide to what to ask your healthcare professional about your Tota results, which you can take with you.
You don't have to keep starting from scratch
When the same symptoms keep returning, it's easy for every episode to feel like you're back at square one.
But you aren't.
Every previous test result tells you something. A negative result tells you something. How you responded to treatment tells you something. The timing of your symptoms tells you something. And looking more closely at your urinary or vaginal microbiome may give you information you haven't had before.
None of those things needs to provide the answer on its own.
The aim is to understand a little more each time, so you can get closer to working out why your symptoms keep returning and what might actually help.
Sources
- UK Health Security Agency / NICE. Diagnosis of urinary tract infections: quick reference tools for primary care. GOV.UK. GOV.UK
- Price TK, Dune T, Hilt EE, Thomas-White KJ, Kliethermes S, Brincat C, Brubaker L, Wolfe AJ, Mueller ER, Schreckenberger PC. The clinical urine culture: enhanced techniques improve detection of clinically relevant microorganisms. J Clin Microbiol. 2016;54(5):1216-1222. PubMed: 26962083
- National Institute for Health and Care Excellence (NICE). Urinary tract infection (recurrent): antimicrobial prescribing. NG112. Recommendations. NICE
- Komesu YM, Dinwiddie DL, Richter HE, Lukacz ES, Sung VW, Siddiqui NY, Zyczynski HM, Ridgeway B, Rogers RG, Arya LA, Mazloomdoost D, Levy J, Carper B, Gantz MG; Eunice Kennedy Shriver National Institute of Child Health and Human Development Pelvic Floor Disorders Network. Defining the relationship between vaginal and urinary microbiomes. Am J Obstet Gynecol. 2020;222(2):154.e1-154.e10. PubMed: 31421123
- NHS. Bladder pain syndrome. NHS.uk. NHS
- American Urological Association (AUA). Recurrent Uncomplicated Urinary Tract Infections in Women: AUA/CUA/SUFU Guideline. AUA
This article is for general information and does not replace medical advice. If you're experiencing new, severe, persistent or worsening symptoms, please speak to a GP or another qualified healthcare professional.
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