It’s the same routine each time. The initial feeling of dread that something isn’t quite right down there. The familiar sensation of burning that resonates from the urethra after urinating (or even just sitting down during the worst days). The frequent trips back and forth to the toilet. Half the time we aren’t able to actually pee, and when we can, it’s accompanied with acute pain and discomfort. This can be incredibly frustrating for those who have experienced recurring UTIs for years — and I’ve personally taken constant trips to the doctor for it.

The response? UTIs are just “unexplainable,” my doctor has said, writing another antibiotic prescription and sending me on my way. Not only were frequent UTIs terribly painful, but they were also impacting a part of my life that was deeply personal and physical: my sex life.

The reality for many people with vulvas who suffer from chronic or recurring UTIs doesn’t so much consist of sweaty romps under the sheets before falling asleep in each other’s arms, but is actually much more along the lines of immediately running to the bathroom to pee after doing the deed. Not such a sexy image. But a necessary act in staving off a UTI (or at least trying to) — peeing after sex is recommended by medical professionals as it helps to flush bacteria out of the urethra.

A UTI is an infection typically caused by bacteria that lives in the intestinal system which can be inadvertently carried from the rectum to the vagina. It is an incredibly common problem that half of all women experience at least once in their lifetime — with one in four experiencing repeat infections that can last for years. In the U.S., it is the reason for approximately 8 million doctors appointments each year. For some, UTIs are perhaps a once in a lifetime annoyance but many can catch the infection frequently and seemingly without cause. For between 25 percent and 30 percent of patients who’ve already had a UTI, the infection will return within six months. An estimated 1.7 million women across the UK suffer from recurring UTI symptoms, according to the Chronic Urinary Tract Infection Campaign (CUTIC), a non-profit campaign group founded by chronic UTI sufferers that works with medical professionals to raise awareness and aims to achieve effective treatment for all.

Inflaming the problem

For people with vulvas who carry recurring UTIs into adulthood, these are not only painful and uncomfortable physical experiences, but something that can seriously impact our confidence and mental wellbeing when it comes to our sex lives. Although UTIs are not specifically caused by vaginal intercourse, it can inflame the problem. Frequent sexual intercourse and new sexual partners are considered some of the main triggers that can put you at higher risk of infection and it’s even been nicknamed ‘Honeymoon Cystitis’ due to the association.

When we worry that sex will exacerbate the issue, it makes us afraid to do it, affects our confidence and how we feel in relationships. Abi, 25, has suffered UTIs since childhood, and now feels the effect on her sex life. “A lot of the time I can’t have impromptu sex or foreplay as I need to pee first and check my partner has washed their hands,” says Abi. “There have been times I have been mentally in the mood, but I feel a UTI coming in and I know sex will only make it worse, or sometimes I can feel a UTI coming on during [sex], which makes it uncomfortable.”

Another chronic UTI sufferer, Kathleen, 31, has felt the impact too. “It’s very frustrating because not only is [the infection] painful, but it also means a hiatus from sex for at least 7-10 days each time,” she explains. “At one point, I was perpetually nervous to have sex because I had begun associating the pain of a UTI with the act of sex.”

Given that life with a UTI often means carefully scheduled toilet breaks and constant fear of infection, it’s goodbye to spontaneous sex and hello to UTI anxiety. Thankfully, research is proving that spontaneous sex isn’t actually the one-size-fits-all route to pleasure. The concept of responsive vs spontaneous desire is the idea of whether we are turned on predominantly by mental interest or a spur of the moment physical impulse. Sex educator and researcher Dr. Emily Nagoski suggests in her book Come As You Are that 15 percent of women experience spontaneous sexual desire, compared with 75 percent of men. If we look at responsive desire, however, 30 percent of women experience arousal after stimulation has begun compared with five percent of men.

“Pleasure comes first. Then desire,” explains Nagoski in a blog post about her research. “It’s called responsive desire, and it’s healthy and normal. But it’s not what we were taught is ‘normal.’ Most of us were taught the standard (but wrong) cultural narrative of sexual functioning.” For UTI sufferers, that long-socialised, patriarchal pressure to be constantly up for sex — and ready to go straight away — is damaging and unrealistic. Leaning more towards the idea of scheduled sex can be a really great way to build that anticipation needed for responsive desire (and has been found to be helpful for neurodivergent people).

“I was perpetually nervous to have sex because I had begun associating the pain of a UTI with the act of sex.”

So, what about when you’re physically in the mood, but your UTI is an obstacle to getting down to it? Dr Katherine Hertlein, couples therapist and adviser to the sex therapy platform Blueheart, says this condition can be debilitating for sex. “This can be frustrating for couples especially if the desire to have sex is there, but one person in the relationship feels like they can’t without compromising their health.”

Talking about chronic UTIs can feel embarrassing for some, not only because it impacts their sex lives, but because any illness affecting sex organs or one’s bladder is often seen as a taboo subject, says Carolyn Andrew, director of CUTIC. “Until there’s an effective treatment for chronic UTIs, women will always be worried about having sex as it can be extremely painful,” she says “Too many will continue to get flare ups of their symptoms after sex. We hear from women all the time whose sexual relationships have been ruined by this illness.”

Unfortunately, despite this common issue, there doesn’t seem to be much attention from the medical world. In a focus group of recurring UTI sufferers conducted in 2021 by the American Urological Association, it was recorded that “women reported their providers failed to address the detrimental impact their UTIs have on relationships, work, finances, and overall quality of life.”To add insult to urinary injury, the National Institute for Health and Care Excellence (NICE), a UK organisation that provides national healthcare guidance and an agency of the NHS, does not even recognise the existence of chronic UTIs.

Taking back control

So, what can we do about a condition that doesn’t receive the attention it needs from medical practitioners and impacts our lives in such a personal way? How we can take back control over our sex lives? Fortunately, there is hope. Open and honest discussion with your partner is key, says Dr Hertlein, providing a support system for you to rebuild your sexual confidence. This may also provide an opportunity to get creative. “This gives you and your partner a chance to shift away from penetrative sex and develop your creativity about what sex can look like. For example, you might opt to engage in more oral sex. Additionally, focus on pleasure instead of performance. Forget what you think you’re supposed to do or how you’re supposed to look, and figure out what feels best for you and your partner.”

Having a partner she can trust and be open with is important for Abi. “I have been with my current partner for six years, so he is very understanding when I say I can’t have sex because I have a UTI, or stopping sex when it feels uncomfortable.” If your partner isn’t patient or is causing you to feel pressured for sex or embarrassed about your condition, this is not OK. Having a supportive sexual partner is something that even medical professionals can agree is essential. Dr Jennifer Dhingra — a medical doctor who has worked with numerous sexual health organisations such as BASHH and Sexpression — acknowledges that not everyone is so lucky. “This may certainly be more difficult if people do not feel as comfortable or supported in having these discussions with their partners. Therefore, as doctors it is important to create a safe space for our patients, to allow them to ask questions and be fully informed, so they feel more empowered to have these conversations.”

Technology seems to be taking a step forward in solving the problem. Companies like Healthy.io have developed apps to enable women to purchase self-testing kits, bypassing time spent waiting for GP appointments and allowing women to gain control and seek treatment quicker.

In terms of future plans for companies like Healthy.io, their aim is to increase accessibility and expand with the NHS. They’ve already started rolling this out in pharmacies across Lincolnshire in the UK. “We’ve already had more than 400 women use the service in the first two weeks which has been brilliant,” says managing director UK and Europe, Katherine Ward. “You can go into a pharmacy there and pick up a kit for free on the NHS. You go and do your test and bring it back to the pharmacist and they can dispense an antibiotic as appropriate.” There have also been developments in treatment. A study by Baylor College of Medicine and Washington University School of Medicine has uncovered a new way of treating infections without repeated use of antibiotics.

Trial and error

Frequent sufferers of chronic UTIs have also come to find methods that personally work for them through trial and error over the years. “Daily cranberry supplements and drinking barley water or diluted juice regularly helps,” Abi says. “But when I have a UTI I try to drink a lot of cranberry juice.” The topic of cranberry juice has been much discussed by chronic UTI sufferers. You could almost think of it as the UTI equivalent to Holy water. Some believe it’s a reliable and trusted method of prevention or treatment, despite there being no solid scientific backing. “Studies have shown contradictory results, so they are not currently recommended for UTI prophylaxis or treatment,” says Dhingra. “If people still wish to use these methods, it is important to identify any risk factors and advise them about the sugar content of the products.”

There looks to be some change on the horizon in terms of self-diagnosis, but CUTIC would also like to see an increase in research, as well as funding to turn that research into treatments. Alongside this, they would also like to see more progress in terms of effective alternatives to frequently prescribed antibiotics. Accessibility is also something they are keen to see improve. “Existing treatment, currently available from a very small number of specialists, needs to be available to all through the NHS,” says Andrew.

It’s important for any chronic UTI sufferer to know they are not alone. With a multitude of people experiencing the same symptoms and anxieties, this is not a singular issue. Still, it’s important to recognise when the condition begins to affect your life in a severely negative way. “Living with a chronic condition can affect your mental health,” says Dhingra. “If you feel this is the case, it’s important to have a chat with your GP so they can help support you or direct you to the appropriate support services.”

There is still a way to go until we’ll likely see effective, medically-approved prevention and treatment for recurring UTIs. Until then, the more honest and open we can be about the major effect this has on the sex lives of countless people, the more we can start erasing the taboo and stop underestimating the nature of this condition.

In the meantime, we’ll keep pushing forward and hoping for a long-term change. (And keep ourselves close to the bathroom, just in case.)

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How chronic UTIs affect your sex life