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Hannah Helgeson

Quality of Life Concerns with UTI

Did you know that 9 out of 10 people with chronic UTI feel that their condition has impacted their quality of life? According to a patient survey conducted by Chronic UTI Australia, half of these people went on to say that the diminished quality of life they experienced was not only present but severe. 


Chronic UTI is known to negatively affect the whole spectrum of someone’s well-being, from physical health to relationships, and finally even mental and emotional wellness. For example, one study found that over 60% of patients with recurrent UTI felt some form of depression as their baseline. However, this is only one aspect of the many ways chronic and recurrent UTI are known to impact a person’s overall quality of life. From having a satisfying sex life, to exercise and traveling, and even to maintaining a sense of self-esteem–chronic and recurrent UTI affects all this and much more.


Physical Quality of Life

For many with chronic or recurrent UTI, physical symptoms interfering with their ability to function and live a fulfilling life are unfortunately the norm. When physical symptoms of this condition become constant, it becomes challenging if not outright impossible for those living with UTI to lead a normal life. In Chronic UTI Australia’s study, nearly 50% of their sample base reported that UTI had an all-encompassing impact on their functioning, leaving them bedridden or housebound. Living with ever-present infections from chronic UTI, these people end up having to cope with feeling deeply physically unwell at most if not all times.


Even those who have less intensity of symptoms may find themselves in constant pain, unable to do fulfilling life activities like work, travel, exercise or eat what they’d like due to the genuine possibility of a flare-up at any time. A Twitter-based survey about the impact of UTI on life factors revealed that many chronic UTI symptoms are experienced throughout the body, including factors like chronic fatigue, general malaise, lower back pain, and more. Not only that, but if left untreated for too long UTI-induced sepsis or kidney infections become a very real possibility.


While some people with chronic or recurrent UTI can lead semi-normal lives, such as holding down a job or maintaining a social life, they do so with much strategizing to mitigate pain. Even for these individuals, activities are restricted due to the fear of flare-ups or worsened symptoms. All of these factors together can leave a person feeling dejected and hopeless.


Diminished Mental Health

With diminished physical health often comes reduced mental health. In a 2022 study of how recurrent UTI affects mental and emotional well-being, a major theme that was reported was how recurrent UTI creates regular feelings of dread and helplessness. Not knowing when their next UTI will happen or how long it will last, patients live in fear of their next UTI, and often feel hopeless as a result. One participant in the study mentioned above went on to say: “I felt trapped. Like I couldn’t break free or away from it. I was trapped in a cycle of having these UTIs back to back and I couldn’t seem to break free.” 


To say that UTI is a disease that only affects the physical body is far from the truth. When treatments or healthcare appointments go poorly, people living with UTI are shown to feel anxiety, anger, and a lack of trust in healthcare workers. The earlier mentioned Twitter study reported that people living with UTI suffer from worsened feelings of self-esteem, which for many can lead to significant depression. For some, their depression around the prognosis of their condition can even lead to feelings of suicidal ideation. Although more research needs to be done on the subject of how chronic or recurrent UTI affects mental health, it is nonetheless clear that there is a notable connection between recurring UTI and decreased emotional wellness.


Relationship Impacts

A significant amount of people living with UTI will experience the most upsetting ramifications from this condition not physically or emotionally, but in their relationships. In that same 2022 Twitter-based study, participants reported that UTI affected all aspects of their relational lives. Those living with UTI may have limited ability to socialize due to the constant need to urinate and may struggle with how pain interferes with their capability to engage with friends or family. This can lead to avoidant behavior in social or familial situations simply due to the need to manage pain and urgency.


One key way UTI affects relationships is in romantic relationships and intimacy. Many with this condition may be unable to have fulfilling sexual intimacy regularly or at all, which can cause strain in partnerships. Even beyond sex, recurrent or chronic UTI may carry enough shame for those living with it that they may feel unable to discuss their condition openly with their partner. A participant in a study on how recurrent UTI affects women in China and Japan reported: “I was afraid the disease might affect the relationship between me and my husband. If we did not achieve harmony in sexual life, I was afraid my husband would not be faithful, or he might also dislike me, so that was my worry and horror.” Anecdotes such as these touch on the complicated way UTI often affects relationships of all kinds.


Coping and Living

The most crucial thing to remember when considering UTI treatment is that there is no one size fits all. Ultimately, this is an underresearched condition that is highly personal and variable upon the individual. What works for one person may not work for another. That being said, there are still some methods that those living with this condition have found successful. 


Something people living with UTI have used to continue with their day-to-day lives despite their symptoms is what we will informally call “social strategizing.” This is a way of coping that essentially involves planning out ways around potential flare-ups of UTI. For some this method could look like medicating ahead of time to prevent pain during a social outing. For others, it could be locating nearby restrooms or even holding a hot water bottle during Zoom meetings.


It can’t be stressed enough that there is no cure-all for everyone with chronic or recurrent UTI, but some have found success through measures like dietary changes or supplements. However, when living with this condition the most important thing to remember is that you are not alone in your experience. With UTI being the most common outpatient infection so many others live through the pain you’re experiencing each day. On our website, we have a list of support group resources that can help provide a community of others who understand what you are going through. You are not alone.

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