“It can never be spontaneous,” says Lara, 21, from Manchester, as she describes what sex is like with her boyfriend of three years. Doing it away from home is off the table, too. “It’s always got to be in my house because I have everything I need here – I can’t have sex at his house,” she explains.

Having a chronic UTI means that Lara is constantly trying to avoid triggers, one of which is sex. Long-term infections like these are poorly understood, and NHS Digital only included them on the dedicated UTI webpage last year after a patient-led campaign. 

Experts believe they tend to develop when the bacteria responsible for acute UTIs aren’t killed off by the short courses of antibiotics usually prescribed. This allows them to embed in the bladder wall, where they become difficult to get rid of. 

According to one medical study, as many as 60% of women will experience a UTI in their lifetime, commonly after sex, and the Chronic UTI Campaign (CUTIC) reports that up to 70% of this group will experience recurrence within 12 months. Symptoms can include a constant feeling of needing to wee and a burning sensation in the urethra. 

Because the illness can be associated with intercourse, it’s one that often has life-changing effects on the way in which women – who suffer disproportionately from it – carry out their romantic and sexual relationships. 

For Lara, having sex in her own home means a guaranteed supply of clean underwear to put on after intercourse, and the ability to wash her bedsheets in preparation. This, along with other rituals, helps to alleviate her anxiety and make sex feel like a ‘safer’ activity. 

“I have to scrub my hands and get him to wash his – and then I have to sanitise and make sure he’s had a shower, and that I’m clean too,” she tells Stylist.

But these ‘safety behaviours’ (as Lara calls them) have the understandable-yet-unfortunate side-effect of making sex itself less appealing. “When you feel you have to take these steps, it kind of takes the fun out of it,” she explains. The pair, who have been together for three years, have only attempted intercourse a handful of times. After she first started experiencing symptoms in her mid-teens, the anxiety around penetrative sex led her to avoid it entirely for a while, and she describes only “successfully” having sex two months ago, a fact which she believes contributed to a delayed sense of intimacy. 

“When we eventually had sex, we got that feeling of closeness – but way later than we should have.”

The condition and the anxiety that comes with it have restricted the kinds of sexual activity that she feels comfortable with. “It has definitely stopped me from doing a lot. Earlier on in the relationship, we bought sex toys to try, but nothing happened because I couldn’t use them.” Now Lara mostly sticks to foreplay, which feels “less risky” than having penetrative sex.

But even then, the anxiety persists. “I have a map of my vulva in my head, and I’m constantly thinking about where he is and what he’s near,” she explains. If he gets “too far down” (ie close to her bottom – a source of bacteria for all of us), he either has to go and “wash his hands and come back, or we stop”. Part of Lara’s anxiety comes from worrying about getting an entirely new UTI caused by a bug that isn’t covered by her current antibiotics. 

Emma, 27, from Essex, has faced similar sexual restrictions. The joyful and hedonistic sex life promised by films and music videos was unattainable as Emma came of age, as sex became a reliable trigger for symptoms. She suspects that despite always seeking treatment, acute UTIs during her teens were the start of her chronic infection.

When Emma got her first boyfriend, sex became increasingly painful. “The longer we were together, the more I was like, ‘This is too painful; I can’t do it – there’s no way I can be intimate with you.’”

The consequences were devastating. “It put a really big strain on the relationship,” she explains. While there is never an exact science to breakups, Emma says her chronic UTI and the ways in which it limited her desire and ability to be intimate had a “big part to play” in the breakdown of the couple. 

Although Lara is still with her boyfriend, she says that her condition continues to have a “really big impact” on the viability of the relationship.

“I worry about it a lot,” Lara explains. “He’s said a few times that he’s wanted to leave me or see someone else because of the [lack of] sex.” Although these ‘blips’ have never amounted to anything, they show just how damaging this condition can be on couples, as well as the individual sufferer. In addition to dealing with the psychological impact of living with a chronic condition, women are also forced to manage the unmet expectations of their partners. 

When Emma was last talking to someone in a romantic capacity, they mentioned that they were “quite [a sexually] active person” and that they have “certain expectations” when it comes to sex. As a result, Emma decided to end things early, assuming that she wouldn’t be able to meet their physical needs.

As such, relationships can often feel safer than casual dating when you have a chronic UTI. Lara explains: “You don’t have to have sex, and you can tell your partner to wash their hands for five minutes before coming to bed – but that’s different when you’re dating someone new.

“If I didn’t have a chronic UTI, my relationships would look very different. I’m bisexual, but I wasn’t able to explore liking girls as much as I wanted to at university. I got a boyfriend and I stuck with dating guys because it felt safest UTI-wise. I haven’t been able to explore my sexuality as much as I’d have liked to.”

This rings especially true for 27-year-old Ellen, who received her UTI diagnosis at the start of the pandemic. At the time, she was in her first serious relationship. “[Being in a relationship] made it easier because there was no pattern for what our sexual connection should look like. It wasn’t like we’d been together for a year or had any kind of ‘normal’.”

It’s impossible to casually date, Ellen says. If you’re in a relationship with an ‘existing intimacy’, however, it can feel “kind of worth it if you have sex and then flare – you have someone to support you through the anxious process”, she says. That simply doesn’t exist with a new or fleeting partner. 

That fact, necessarily, restricts who you can date. Ellen looks back on her early 20s with a deep sense of loss. “It’s a time when a lot of people are exploring their sexualities and relationships, but for me. it has been very much tainted by being unwell.

“[My condition] has impacted my capacity to date and desire to date.” She’s now grieving for the experiences she never had, and grappling with the additional expectations that come from approaching a new decade. “[Your 30s] is the period where everyone tends to settle down, but with this chronic illness, your life can’t progress at the same pace as everyone else’s.”

But there has been one silver lining to come from her diagnosis. “It’s really made me think about boundaries and how I want to structure my relationships in the future,” Ellen explains. She’s concentrating on retaining a degree of control over her condition rather than appeasing a partner.

Despite finishing treatment eight months ago, Emma still experiences daily pain and has no plans to return to the dating scene. “I just avoid even thinking about the possibility of being with anyone. There’s no way I could be intimate with someone, and I know that’s a big part of any relationship.”

And although Lara is still anxious and angry with the way in which her condition has limited an important part of her life, she’s managed to make peace with the reality of her relationship.

“I worry, but then I [reflect] on what’s in my control and what’s not; I can’t change anything, and if somebody’s going to cheat on you because you can’t have sex, then let them get on with it. I don’t need that kind of person in my life.”

These women have had no option but to take the management of their chronic condition into their own hands – by changing the ways in which they have sex and engage in intimacy. The NHS advises asking your GP for a referral to a specialist but warns that chronic UTIs tend to be treated “with antibiotics, which you may have to take for a long time”. For many who live with the pain, however, there’s no magic pill.

Images: Getty