Around half of American women are familiar with the symptoms: stabbing pain, burning when urinating and a dull ache that never lets up.
Suzannah Weiss dealt with this pain for more than a year, but for most of that time, doctors told her that what felt like a urinary tract infection (UTI) was something else entirely.
At her worst, she was using the bathroom every 15 minutes.
‘It was really hard to go out with friends and have a social life,’ she told the Daily Mail. ‘It was also uncomfortable to walk because of the pressure it put on my bladder.
‘I was sleep-deprived because I kept getting up to pee, ranging from maybe three times on a good night to 10 or more times on a bad night.’
Weiss, an author, described the pain not so much as sharp stabbing, but more like constant, burning irritation that never fully eased over the course of a year – made worse by the pressure of walking or the frustration of yet another night of tossing and turning.
‘The first urologist I saw told me that I was likely just experiencing bladder nerve hyper-sensitivity stemming from stress,’ she said, referring to a condition in which the nerves that control bladder function become irritated or overstimulated, triggering frequent urges to urinate without any underlying infection.
She was told by eight doctors that her bladder issues were incurable. But the truth was hiding all along: a low-grade infection standard tests kept missing.
For Suzannah Weiss, test after test came back negative for UTIs, and antibiotic after antibiotic did nothing. One urogynecologist diagnosed her with interstitial cystitis, explaining it had no known cause and could only be managed, not cured
She was diagnosed in May 2018 with the incurable condition interstitial cystitis (IC) after a urologist performed a cystoscopy – inserting a catheter into her urethra to look inside her bladder.
‘I read online and kept hearing in online support groups that the condition was incurable, which freaked me out a lot,’ Weiss told the Daily Mail. ‘It was really scary to keep thinking I was getting better and then experiencing flare-ups again.’
There is no definitive test for IC. Unlike a UTI, which appears on imaging and shows up on a culture or kidney stones, IC has no biomarker, no lab result and no definitive scan.
It is diagnosed based on symptoms such as pelvic pain, bladder pressure, urgency and frequency in the absence of other conditions like an infection or cancer.
The urogynecologist told her IC had no known cause, so treatment was simply about managing symptoms.
For several months, she took Elmiron, a drug meant to thicken the bladder lining. It didn’t work, and instead just gave her diarrhea, barely touching the pain.
While her bladder appeared normal during the cystoscopy, the burning and pressure she had been feeling worsened.
She wondered whether the cystoscopy itself irritated her bladder or if the antibiotics she was given afterward disrupted her microbiome, wiping out the good bacteria that usually keep harmful bacteria in check.
Weiss, author of Eve’s Blessing: Uncovering the Lost Pleasure Behind Female Pain, described the pain as a constant, burning irritation that never fully let up, worsened by the pressure of walking and the exhaustion of sleepless nights
Either way, she kept testing negative for UTIs and kept being prescribed antibiotics that did nothing for her pain.
It wasn’t until July 2018 – months after her initial IC diagnosis – that a urologist specializing in the condition took one look at her and said there was ‘no way’ she had it.
He explained that standard urine tests miss many low-grade, chronic UTIs because they were designed to detect acute, high-count infections, not the tricky, embedded bacteria that cause chronic symptoms and don’t show up on screens.
The doctor performed a specialized test called a broth culture that creates an environment in a urine sample where any bacteria, including the particularly fastidious type, can actually grow to the point of being detectable.
In Weiss’s case, the broth culture revealed a low-grade, chronic infection that standard tests had missed for over a year.
After being told throughout that time that her suffering was due to stress or an ‘incurable condition,’ Weiss finally had an answer and, more importantly, a cure.
For most people, a UTI is a painful nuisance that clears up with a three-day course of antibiotics.
‘I did a three-week course of antibiotics,’ she said, ‘and felt mostly better after that.’
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After months of negative standard urine cultures, a urologist specializing in IC ordered a broth culture – a specialized test that creates an environment where fastidious bacteria can actually grow. It found what standard tests had missed all along: a low-grade infection
For the first time in over a year, the burning stopped.
But then neurological symptoms began: headaches, brain fog and severe fatigue.
In September 2025, just a few months after she was correctly diagnosed, Weiss visited a functional medicine doctor, who conducts long appointments with patients to get to the root of what is causing their intractable symptoms, taking a deep dive into one’s personal history, family history, diet, sleep, stress levels, environment and past exposures.
She was diagnosed with chronic Lyme disease, a poorly understood condition where patients experience persistent symptoms, such as fatigue, pain and neurological issues, long after the standard antibiotic treatment for Lyme has ended.
The Lyme bacteria Borrelia burgdorferi form biofilms – highly resilient communities of bacteria that form into slimy matrices to protect from the host’s immune system – proving up to 1,000 times more resistant to common antibiotics like ceftriaxone and doxycycline than free-swimming bacteria.
There has been some evidence to suggest that these biofilms make infections, including those in the urinary tract, harder to treat.
Since her longer course of antibiotics, starting a nutrient-rich anti-inflammatory diet and repairing her gut microbiome, Weiss has been free of UTIs.
‘My chronic UTI journey taught me to think independently, do my own research and seek second opinions,’ said Weiss, who wrote a book titled Eve’s Blessing: Uncovering the Lost Pleasure Behind Female Pain.
‘I’d also advise being skeptical of doctors who claim your symptoms stem from stress, anxiety or depression. In my experience, this is what doctors say when they’re just unsure what is really going on.’
