I Asked Women How Their UTIs Made Them Feel. Their Answers Were Heartbreaking.
This article was originally published on Medium.
Here’s something: Urinary Tract Infections (UTIs) are the most common bacterial infection in the world.
So why does nobody seem to care about them?
The problem is two-fold.
The first problem is that the people who are suffering from UTIs are typically not in a position to advocate for better treatment. The second is that the people who are lack the empathy to effectively do so.
UTIs disproportionately affect women, children, and the elderly. Adult men are rarely, if ever, affected by UTIs, until they enter old age. Then it’s fair game, as men and women contract UTIs at equal rates after age 60. Famous politicians like George Sr. and Sen. Thad Cochran have recently been put out of commission by them.
It wasn’t surprising that when I asked women who deal with recurrent UTIs and Interstitial Cystitis (a fancy word for a UTI that never goes away) how they felt about their ailment, their most common frustration was the feeling of being neglected by those responsible for helping them.
Here’s what they said. I encourage you to read every word, lest you leave here lacking the empathy needed to understand this problem affecting over 50% of women:
“Chronic uti has literally destroyed my life quality.I was given Cipro for two years for my UTIs and that medication crippled me for the rest of my life, and I still suffer with these horrendous UTIs. If I’m not on a low-dose antibiotic every day I will have a UTI every week. It’s not cystitis bull because when I’m on low-dose antibiotic I do not get any pain so that’s is just something the doctors say when they don’t know what they’re talking about, The severe pain of UTI has me rolling on the floor screaming it’s so severe. D-mannose doesn’t work for me probiotics doesn’t work for me, I have tried every single thing, I am now 55 this began when I was 18, it’s only gotten worse and worse throughout the years, The Cipro destroyed my entire nervous system, yet I’m still getting these UTIs. The pain gets worse every time. Uristat doesn’t even touch it anymore. So now I must live on an antibiotic every day,not the one that ruined my nervous system , and put me in a wheelchair ,but I don’t like to be on any of them and I have no choice or I will be with a UTI 24 seven… cystitis is a MYTH , I don’t feel any of that pain when I’m on antibiotic . It’s all just lies drs know nothing about why these are so recurrent .” — Anonymous
“I feel disappointed that modern medicine hasn’t found a cure for UTIS. Doctors seem uninterested in our misery and feed us antibiotic after antibiotic not truly knowing what’s causing this abnormality. It is not normal to have blood in your urine! It is just super frustrating to have to do your own research and cross your fingers that “Facebook” doctors can save you from the epic pain and torment that we are all living with. How is this not a bigger conversation and major priority for the medical community?” — Anonymous
“Helpless, Tiring, Frustrating and quite often angry. Doctors to come up with ‘correct’ treatment options instead of coming up with antibiotics as they were candies… Lack of ability to recognise root cause and sending patients back with no care/empathy is fraustrating the least. there should be more research around usage of contraceptive pills, injections or any hormonal related substances women have to take on long run…” — Anonymous
“Chronic UTI — When it is active, it makes me feel catatonic like I cannot move because the only thing I will want to do is sit on the toilet. It makes me feel helpless and afraid because I have an infection for which there does not appear to be a cure. It makes me wonder what really caused this. I started getting them around age 55 and I didn’t do anything I haven’t always done. I feel hopeful because I found this fb page where there are women who have scientific knowledge and experience with this condition. They have warned me about what is dangerous and introduced me to ways of managing this condition. What do I want? I want to know if medical cures are really necessary or if any of the non-prescription cures talked about on this fb page will work just as well and with less side effects. I want to hear from women who have actually tried non-prescription/non surgical treatments and have been cured. I want to know that dmannose will always be available to me. I want to better understand what is the best treatment for the different bacteria that cause the UTIs. I want to have NYS change its law regarding getting tested without a dr visit!! I have a UTI right now but I refuse to go to the dr just to have him tell me what kind I have. That is ridiculous. I want to have control over my own health!!!” — Anonymous
“I have chronic UTI. The UTI is like a phantom in my life. It directly affects my social life. It ruined my sexual life. When I feel the Phantom is nearing, I get stressed and frustrated because there’s nothing I can do to end it. Doctors don’t bother to try and help out. They just throw antibiotics into us. There are little studies about the issue and yet I feel I know more about the subject than my doctor. This is a sad life. For me and for my partner.” — Anonymous
And that’s not even all of the responses.
Let’s read that one again together:
“This is a sad life.”
A sad life indeed. It’s probably an unfortunate coincidence that most of the regulators responsible for managing and monitoring the UTI crisis are adult men who don’t seem to have the capacity or the interest needed to address this problem, or even acknowledge its significance. Through no fault of their own, other than an inherent lack of empathy, it seems that the global UTI problem affecting over 200 million women has completely escaped their purview.
The people affected by urinary tract infections are the people least likely to be able to advocate for their resolution. Women, children, and the elderly do not make up a significant portion of our healthcare policy and lawmakers (obviously). The majority of people responsible for creating guidelines around this issue are adult men who have probably never experienced a UTI in their life.
For doctors earnestly trying to help their patient resolve their UTIs, it’s a sad life too. There is no lack of perspective from the physicians on the front lines. Rather, it appears to be the system that is failing both the UTI patient and UTI pacifier.
It’s not a hygiene problem.
It’s not doctors who are responsible for the UTI crisis as a whole––it’s a feedback loop of misinformation that seems to be the culprit. Somewhere at the top, misguided UTI myths go unchallenged before being circulated as fact to patients and doctors alike. It’s the feedback loop that is responsible for this mind-boggling phenomenon that perfectly illustrates the disconnect between patient and provider:
When visiting the doctor for a UTI, female patients are told to make sure they wipe from front to back as a means of preventing their UTIs.
This is what UTI sufferers are dealing with. Grown men telling grown women to make sure they don’t wipe poop into their peehole. Grown men thinking that grown women actually do this.
The medical community shouldn’t be patting itself on the back for offering this kind of hygiene-shaming advice. As it turns out, wiping patterns haven’t been shown to affect your risk of UTI. No studies have shown that hygiene, direction of wiping, hot tub use, or tightness of clothing increase the risk of UTI recurrence. It’s a given though, that women should and do wipe front to back.
You can ditch the cranberry juice too, as that has also been proven to be another pervasive myth in UTI prevention, that was by the way, touted by doctors and is till this day. Dr. David Samadi is one such doctor who leapt at the chance to feed this line of cranberry-coated BS to the media when asked to provide some medical news fodder about it last year.
While we’re awarding pats on the back, Jason Chen, a writer for the garbage-pale news site called Lifehacker, also deserves one for enlightening us with his article, Which Direction Should I Wipe?
Thanks Jason! We couldn’t have figured it out without your brilliance!
How is it possible that grown men with advanced medical degrees continue to reduce these painful, complex infections to a self-inflicted hygiene issue?
I don’t know, but I suspect it’s partly due to the same breed of ignorance that allowed this advertisement to happen.
Welcome to the world of snake-oil sellers that is the $150.4B prevention and treatment market.
This is a world where an advertisement describing a potentially life-threatening infection as “sexy” can go through several rounds of approval and somehow still end up in my newsfeed.
(I asked the same women that told me how they felt about their UTIs to tell me how they felt about this ad. They were not kind.)
Do you see a pattern here? It’s a pattern of people who don’t have the capacity to deal with this problem continually being put in positions where they have to deal with this problem. It’s getting us nowhere.
Here’s the takeaway from these hilariously disturbing anecdotes: Women aren’t giving themselves UTIs because they don’t know how to wipe. There’s something bigger going on here.
And it’s possible that the people responsible for raising the red flags aren’t “woke” enough to do so. The UTI market is not unlike the pantyhose market of the 2000s before Sara Blakely entered the picture. Before she created Spanx, the pantyhose industry was run by men who had no experience wearing the product they were responsible for creating. Women’s pantyhose were uncomfortable and had been for years because the same size waistband was being used on every pair, no matter the size of the woman, to cut costs.
Such is the story with urinary tract infections.
Taking a direct quote from Sara herself, and replacing it with terms from our UTI scenario, and it’s basically the same phenomenon.
“I kept talking to all these men, in the process of trying to make my product, and I remember thinking, ‘Where are the women? Why am I not speaking to any women here?’ And then it dawned on me that maybe that’s why our [UTI treatments] had been so [useless] for so long because the people making them aren’t [using] them.”
Nobody cares about UTIs, and it’s going to cost us.
SUPERBUG, definition: a pathogenic microorganism and especially a bacterium that has developed resistance to the medications normally used against it.
Those superbugs everyone is worried about? That news outlets have called the next plague? The superbug that no antibiotics can treat, that will most certainly kill you once infected?
That superbug was first found in a woman with a UTI in the United States.
It had been found in India and other countries, but its first appearance across the pond was in a woman with a UTI in Pennsylvania.
The kicker? Doctors found it by chance. This was a relatively healthy woman who happened to be tested at a VA hospital where they took the time to determine what type of resistance her UTI-causing bacteria developed. Less than 10% of women receive this in-depth testing when they seek treatment for a UTI.
Since this superbug was first detected in the United States, it’s been found more times across the US in, wait for it, women with UTIs.
The media coverage of the superbug is in proportion to its threat to society. Reporters dutifully write about the consequences of this superbug, the cause of its development (a leading cause being the overuse of antibiotics in livestock meant for human consumption), and their musings on what should be done about it.
But many forget one critical piece of information in this superbug puzzle.
We’re not finding these superbugs in hospitals, where resistant bacteria is plentiful (because, spoiler alert: hospitals are the perfect cesspool breading grounds for resistant bacteria).
We’re finding these world-ending, plague-potential, life-threatening superbugs in healthy women––with urinary tract infections. And nobody seems to care.
(Except this guy from NatGeo: Why It’s Crucial the New Superbug Was in a Urinary Tract Infection)
CDC Director Tom Frieden told the Washington Post that the discovery of this superbug in a human patient “basically shows us that the end of the road isn’t very far away for antibiotics—that we may be in a situation where we have patients in our intensive-care units, or patients getting urinary tract infections for which we do not have antibiotics.”
Ever been to a urology conference? No need. I’ll summarize for you: It’s a bunch of old dudes talking on stages about the latest erectile dysfunction defying treatment and technologies that are meant to save humankind from its most pressing threat––limp penises.
Limp. Penises. Not that limp penises aren’t uncomfortable, but they certainly don’t threaten to end the world as we know it.
Calibrate, people.
Do you know what does threaten to end the world as we know it? The world where if you need an antibiotic to save your life, it will work? That world?
That world is under siege by UTIs that are giving the finger to antibiotics. UTI-causing bacteria, or uropathogens as they’re sometimes called, simply DGAF about our antibiotics and have learned to evade every one we’ve thrown at them. The only ones they haven’t evaded are the ones they haven’t met yet.
This is why it’s so important to eliminate the overuse of antibiotics. Not for me, not for you, but for the me and you of 20 years from now. For our daughters and granddaughters who may die from simple infections because we’re running out of antibiotics capable of treating them.
The time may already upon us. Just last month at the world’s largest urology conference, Dr. Yoshitsugu Nasu presented his findings on the resistance rates of UTI-causing bacteria. He and his team found that in 22.1% and 19.5% or cases, UTI-causing bacteria were resistant to quinolone and beta-lactam antibiotic antibiotics, respectively. His words: “We have to pay attention to resistant E. coli when we choose antibiotics for the treatment in patients with uncomplicated UTI.”
Yet another study presented at the same conference concluded: “The emergence of ESBL-producing strains is a serious health problem both in our community and hospital setting.” The name of that study was Antimicrobial Resistance and Extended Spectrum Beta-Lactamase Agents in Urinary Tract Infections: a Serious Problem in the North of Mexico.”
Hear that? A serious problem. Mexico has seen a 500% increase in UTIs.
Even if we completely disregard their world ending capabilities, UTIs place a significant burden on the 200 million women around the world who will wake up with a BURNING URETHRA this year. Isn’t that reason enough to give UTIs the credit that UTIs are due? Isn’t that enough for us, as a medical community and as a society, to say: there’s a problem here? How many million people have to suffer a year for an ailment to justify more than a handful of sessions at a measly urology conference?
For limp penises, the answer is 150 million people. Well, move over penises. Our urethras number at 200 million, and they’re threatening to end the world.
It’s time to sound the freaking alarm. The storm of antibiotic resistance is coming for your daughters, mothers, grandmothers, and grandfathers. It’s coming in the form of urinary tract infections.
Why is the concern for UTIs so disproportionate to the problem? Billions have been spent on developing treatments for the flaccid flag. Not so much for urinary tract infections. The science is so behind, that remedies that should warrant FDA recognition as a recommended treatment (hello, d-mannose) have gone completely unnoticed. They remain in the catacombs of medical journals, waiting to be unearthed by someone who cares enough to pay attention.
I say, the wait is over.
Sara Rose Harcus is a former chemist, 3x entrepreneur, and UTI expert. After leaving her tech job in Silicon Valley, losing a grandparent who endured a chronic UTI, and suffering over 20 UTIs herself, she started Dmanna, a UTI prevention company whose goal is to prevent UTIs on a global scale.