Chronic UTI Sufferers Seek to End Pain and Shame

Dr. Rahel Nardos is developing a web-based app for an eight-week “mindfulness intervention” that will help women cope with the emotions that come from chronic pelvic and bladder pain. Photo Sarah Whiting

During the winter of 2022, as the weather cooled and the sunlight lessened, Laura Preves Helgeson decided something had to change.

Having first experienced urinary tract infections (UTIs) as a toddler, Helgeson had grown tired of staying silent about a disease — one that disproportionately affects women — that for years had shaped the contours of her life.

She launched her website, UTI Health Alliance, in January 2023. Her goal is to educate and empower women, advocate for more accurate testing and treatment of UTIs, and nudge a medical establishment that too often, she says, dismisses women’s symptoms.

For Helgeson, those include extreme bladder pain, urinary frequency and urgency, dizziness, brain fog, and a chronic lack of sleep.

“I’m up between seven and nine times a night, every night,” says Helgeson, 58, who estimates she hasn’t slept through the night in six years. She also fainted when getting up in the middle of the night to pee recently, and says she is forced to spend much of her time in bed.

Helgeson lives in Bloomington, but her research and advocacy have developed a global reach. Eighty-five percent of the world’s 400 million UTI sufferers in the past year were women, she says. According to research detailed on the UTI Health Alliance website, both Australia and the United Kingdom have more advanced testing methods, more online support groups, and more enlightened doctors than the United States.

Laura Preves Helgeson

Helgeson founded the Alliance with help from her husband, Scott, who advised her to make it an advocacy- and education-focused organization rather than a nonprofit. Unlike the Urinary Tract Infection Global Alliance or Live UTI Free, the UTI Health Alliance does not raise money or sponsor research.

“My husband and I paid for this. We make no money,” she explains. “I have the time and the resources, and it has to be done.”

The website focuses on patients, including downloadable resources such as a worksheet to prepare for health care visits (“You Have Choices!”) and the “Hearing Patient Voices” survey sponsored by Chronic UTI Australia. “My daughter calls it my passion project,” Helgeson says. “I want women to see that they’re not alone. They can get answers for their confusion and questions and know they have a right to speak up.”

“You go into very dark places.”

A key source of Helgeson’s frustration — and that of many chronic UTI sufferers — is having the painful symptoms of a UTI even though their standard urine tests show no sign of an infection. In those chronic cases, the infection may have lingered so long that bacteria have embedded in the bladder walls, protected by a slimy substance called a biofilm, which makes it difficult for antibiotics to reach.

Rachelle Keating, a mother of three in Pennsylvania, served on the board of the UTI Health Alliance shortly after the organization launched. Having suffered for years from an untreated infection that became chronic, she says her hometown urologist “patted me on the shoulder and told me to have a glass of wine and do some yoga.”

The doctor had used the “dipstick” and “standard urine culture” tests for Keating’s UTI symptoms, and the results were consistently negative. She later learned that those tests “miss 50 to 70 percent of infections,” she explains.

After two years of persistent and excruciating symptoms, “I wished for death,” Keating says. She endured hydro- distension of her bladder three times — and once went home with a catheter and leg bag. She finally found a urologist in Louisiana who believed her symptoms to be real. “The majority of women with these symptoms have what he calls chronic bacterial cystitis.”

The two ongoing doses of antibiotics he prescribed give her yeast infections but ease her pain. “I was in a constant state of anxiety. It was soul-crushing,” Keating says. “I didn’t think I was going to get my life back. That’s when you go into very dark places.”

Along with ongoing doses of antibiotics, Helgeson takes prescribed painkillers. Without them, she says, “I would be dead. I couldn’t survive the pain and agony of this infection if I weren’t taking something.”

Nearly 10 percent of chronic UTI sufferers in an Australia-based study reported having felt suicidal due to pain and despair. Nearly 82 percent of respondents said health care professionals had “dismissed” or “disbelieved” their symptoms. With an average age of 46.7 years, and 96.5 percent identifying as female, survey participants also said chronic UTIs affected their sex lives and their ability to feel good about themselves.

Shame and Secrecy

Commonly known as bladder infections, UTIs are caused by bacteria moving from the vagina or anus into the urethra, the tube that empties urine from the bladder.

People who have suffered from recurring UTIs may not have experienced depression or suicidal ideation because of the condition, but isolation still affects women who suffer even occasionally from what Helgeson calls a mistreated and misunderstood disease.

Doris (not her real name) is 78 and the mother of three children. She has dealt with incontinence for nine years, and more recently with persistent urinary tract infections. Though not debilitating, the unexpected leakage from her bladder — which Kegel exercises failed to cure — is prevalent enough that she always wears a pad. She jokes with friends about the “diaper bag” that travels with her, holding fresh underpants and pads along with a rolled-up pair of hiking pants. She refuses to attach her name to any comments about her UTI.

“There’s a lot of shame, I think,” says another anonymous source, 24, who first experienced a UTI about four years ago. Because she is applying to graduate school, she doesn’t want her name and references to infections linked online. The shame among UTI sufferers goes beyond professional considerations. “People are embarrassed about having an infection in a private area,” she says, “especially if they’re told by doctors that they’re making it up.”

UTIs often are related to intercourse among young women, according to Dr. Rahel Nardos, a urogynecologist at the University of Minnesota Medical School who conducts research on women’s pelvic health. That correlation with sexual activity may account for some of the embarrassment about UTIs too.

Dr. Nardos begins her diagnosis of UTIs by asking young women about their sexual activity. “You’d be amazed by how many women I see who have never been asked that question,” she says. She talks with women of all ages about cleaning themselves after a bowel movement by wiping front to back. “A lot of the bugs that get into the bladder come from fecal matter,” Dr. Nardos explains, “that migrates into the vagina and urethra.”

Dr. Nardos treats bladder pain, pelvic pain, and overactive bladders in addition to urinary tract infections. Resulting distress, anxiety, and depression can be as acute as the physical pain, she says.

Along with a mindfulness expert, a pelvic floor physical therapist, and a women’s health psychologist, Dr. Nardos is developing a web-based app for an eight-week “mindfulness intervention” that will help women cope with the emotions that come from chronic pelvic and bladder pain as well as other bladder symptoms like urinary urgency, frequency, and incontinence.

Among older women, similar symptoms of urgency, frequency, and burning may be related to dryness in the vagina, bladder lining, and urethra rather than an infection, says Dr. Nardos. She prescribes vaginal estrogen cream, which moistens the dry tissue and can reduce the risk of bladder infections in the middle- aged and older population.

No Promises, Little Relief

The day after our final interview, Helgeson and I bumped into each other in downtown Minneapolis. When the talk turned to bicycling, which used to give me UTIs, I told her that I still refuse to bike without wearing padded shorts.

She praised my vigilance even decades after infections had ceased to be a problem for me. But for Helgeson, and Keating, and the other women who suffer from chronic infections, the recommended precautions — to pee after intercourse, wear loose clothing, change pads and underwear frequently, avoid coffee and alcohol, eat probiotic foods, and drink lots of water — rarely seem to work.

In elderly women, undiagnosed or untreated UTIs can manifest as confusion or dizziness, potentially causing life-threatening falls, according to Dr. Sarah Maier, a regional medical director of Herself Health, which provides primary care to women over 65.

Helgeson says nothing will change — be it more advanced and accurate testing, better-informed doctors, or the reported development of a UTI vaccine and other advances in treatment — unless women “break the silence.” Researchers and medical professionals “are not spending enough time on this topic, which affects more than half of women in their lifetime,” she says.

Her advocacy may be working. Helgeson recently was invited to speak in July at a conference in Columbus, Ohio, for the UTI Global Alliance, an international group of researchers and clinicians, and in June at the University of Wisconsin—Madison Summer Program for Undergraduate Urology Research. “I’m hoping to influence them about the importance of much-needed UTI research,” she says.

Even as she works to build credibility for UTI sufferers and “bring patient-centered awareness to researchers,” Helgeson refuses to allow herself hope. “The younger generation — I have hope for them,” she says. “For me, to introduce hope would take away from my level of acceptance.”