Let’s say you’re me, and starting somewhere in your twenties, you get your first UTI. And okay, you’re a medical student, so you know what’s up right away and get your butt to the University’s clinic for a course of antibiotics and a bottle of a drug you’ll come to love more than people and maybe even dogs: phenazopyridine. That wasn’t fun, but maybe it’s a rite of passage. And then you get another, within the next six months. Uh oh.
About 20% of women who get a first UTI get a second. About 30% of those women will get a third. If you’ve had three, there’s an 80% chance you’re going to keep getting them. Congratulations, you have recurrent or “chronic” UTIs. You’re in the world’s least fun club. Being in this club means carrying phenazopyridine with you wherever you go (Pyridium, also known as Azo or Uricalm), peeing immediately after sex every damn time, drinking water constantly, going to the ER three or more times a year for infections, and begging your physician for some way to get off of this rollercoaster. It took me over ten years of begging to be treated properly and get my life back, with some awful detours along the way. Don’t let this happen to you. It doesn’t HAVE to happen to any woman.
Quick refresher for anyone not clued in. If you’re biologically female, you have a short urethra, and it’s all too easy for bacteria - typically E.coli - from your own body to be “massaged” into that short urethra during sexy times. Some other activities may cause this to happen as well, and of course other situations can make one prone to UTIs, such as the use of a catheter. But for our purposes we’re discussing what my medical textbook called Honeymoon Cystitis - a UTI in a young woman brought on by sexual activity. Within hours of getting it on, you’re going to experience urgency and dysuria. That’s fancy medical talk for feeling like you have to pee every fucking second, even with an empty bladder, and it being excruciatingly painful to pee, even if it’s two drops. Give that some time, and you’re likely to experience hematuria as well, i.e. blood in your urine. You’re going to want to pop some Pyridium as soon as the urethral pain starts so you can get a long enough break from the symptoms to get yourself to the doctor. And then you’re going to be chewed out at the ER, because Pyridium is a dye, and now your orange urine is messing up the urine dipstick. Tell them it was that or an adult diaper. They’ll give you a course of antibiotics, typically for 3 or 7 days (always ask for 7), and they’ll call you in 48 hours with the results of the urine culture.
You can see why you don’t want to live like this for years on end. Every infection is a day of missed work or school. Each infection is at least a week off from being intimate with your partner. Phenazopyridine causes tumors in animal models, and it cannot be good to ingest the amount you’ll need to survive constant UTIs year after year. And what is this doing to your urinary system? It’s believed that this consistent damage can lead to a chronic pain syndrome known as Interstitial Cystitis. IC is a lifetime of daily UTI symptoms, and many women with that diagnosis are on disability. The suicide rate would shock you.
But to get off of this train, you’ll have to turn yourself into a bulldog (I know, I know. Mixed metaphors. Deal). And you better pray those urine cultures come back positive. To get the treatment you deserve - and there IS life changing treatment - you will need to prove you’ve had a certain number of UTIs in a given time period. I’ve typically been told I needed 3 in a year. When I had a “good” year and only had 2, I’d be told my case wasn’t serious enough. When I had 3 or more, I’d be told I’d gone to too many different clinics (it was common to for me to hit up the Planned Parenthood near my then-boyfriend’s place when I was across the country visiting him), and they really wanted to see a consistent pattern in their record. And then there were the negative urine cultures. Between 1/5 and 2/3 of women whose infections are confirmed via molecular diagnosis - meaning, PCR directed against bacterial DNA - have a negative urine culture. It is the Gold Standard for UTI diagnosis, but it’s actually not a great test. And if you begin to have negative cultures despite clear, raging UTI symptoms, now you have an even bigger problem. Btw, a culture is still useful for identifying the pathogen and determining its antibiotic susceptibility.
Last July, after ten years of this fun, I began having more aggressive UTIs. They stopped responding to Pyridium, such that I couldn’t achieve symptom relief no matter how many I took. I was chained to my bathroom. The UTIs started coming every 10 days or 20 days instead of every few months. And at least every other urine culture was negative. In response, the ER doctors and the OB-GYN I was sent to for specialty treatment told me I didn’t have UTIs. I’d been wrong all along. I had Interstitial Cystitis. No more antibiotic treatment would be prescribed. My first UTI that I was not treated for ended the way you’d suspect: after a week of progressively worse symptoms and peeing nothing but blood, I began vomiting uncontrollably. My fever was so high that I was barely conscious, and my flank pain was extreme. I was admitted to the ER for treatment of a kidney infection, and it took IV antibiotics and ten days of recuperating to feel human again. Two weeks later, the symptoms started up. Despite the recent episode, I was reminded I could not have antibiotics. I began to fall apart.
I was started on Amitriptyline, an antidepressant that is also effective against neuropathic pain and can be helpful to women with Interstitial Cystitis. I was counseled to meditate through what was becoming constant pain. But it wasn’t the pain that was the problem; it was the urgency. When you feel the overwhelming urge to urinate, you can’t ignore it, and you can’t focus on anything else. I began wearing diapers to bed after nights of trying to sleep on my toilet. I went on an “IC Diet,” which eliminated all sources of acid and any other food thought to irritate the bladder. I couldn’t have sex anymore, because that could trigger a “flare.” I was to think of my instances of UTI symptoms as “flares” of my chronic pain disease that could not be treated and from which there was ultimately no escape. My symptoms would disappear when I didn’t have sex. That had always been true - I never got a UTI without having sex 12 hours previous. So, I finally had a relatively normal month. I was told I could be intimate again, now that the analgesic and diet were managing my pain syndrome. I went to my boyfriend’s for some very gentle, careful sex. I woke up at 2am the following morning with raging symptoms. I remembered I couldn’t go to the ER and sobbed in my bathroom for hours. I was trapped there for days. I missed work. I missed two classes. I couldn’t bring myself to eat. I began peeing blood. The pain was so severe that I was shaking. And that’s when I gathered myself up and went to the ER to cry and beg. The acute care clinic was wrapping up its last shift. My doctor was tired and rushed, and didn’t bother to look through my chart. My dipstick showed very high WBCs, blood in my urine, and the presence of nitrites. Clear infection. I went home with a bottle of Cipro, too exhausted to feel victorious.
I didn’t wait for that urine culture to come back. I wrote my primary care physician a letter that night through the patient portal. I told him I couldn’t do this anymore. I told him that I acknowledged my own bias, that of course I didn’t WANT to have IC. And perhaps I was wrong. But that I truly believed I didn’t have it, that all of these were infections, and that I couldn’t spend any more years counting UTIs and begging for proper treatment. Would he please, please consider prescribing postcoital prophylaxis? If it didn’t work, that would still be valuable to know. He agreed. He wrote a script. That was the end of my rollercoaster.
I take 100mg of Macrobid every time I have P-in-V sex, with a maximum of two pills a day. Since starting postcoital prophylaxis, I have not had a single UTI symptom. It has been about six months since I got my script. My life has been transformed. I still pee after sex - I always will. But I no longer live in fear and constant vigilance. I drink five cups of coffee a day and indulge in all of the other foods I was told I could never have. I fuck my boyfriend vigorously at least 6 or more times a week and don’t worry about the position. I live a life free of UTIs and urethral pain.
Don’t spend 10 years living this way. Don’t wait for a freak series of negative cultures to deprive you of antibiotics and send you into a panic before fighting for real treatment. You have options, and those options are laid out in the Annals of Internal Medicine “In the Clinic” feature on recurrent UTIs:
- a standing prescription for you to fill when you diagnose yourself (studies show women with recurrent UTIs are damn good at diagnosing themselves)
- postcoital prophylaxis - a monthly prescription of low dose antibiotics to be taken after sex
- daily prophylaxis - a daily dose of antibiotics if the above fail
Maybe you’re already getting negative cultures, and no doctor will prescribe any of the above options. Explore molecular diagnostic options. There are companies in Canada that will test a sample for bacterial DNA. Some may require a prescription, so be ready to fight your doctor for it. And let’s say after all of that, there’s no infection to be found. Life with IC is extremely challenging, but there’s a fantastic resource online called Inspire. It’s full of support and tips. Get yourself on Desert Harvest Aloe Vera and follow their website’s instructions. Many, many women have found relief that way. All hope is not lost. But whatever your ultimate diagnosis, these issues that plague women are often not taken seriously by the medical community. You may be told the symptoms are all in your head, or that you’re dirty and not cleaning yourself well enough. Or that you’re having too much sex. Or that as an adult woman, you somehow do not know how to wipe yourself on the toilet. Don’t listen, and keep your claws out. Only you can advocate for you.
My final piece of advice is for the ladies out there who don’t have a need for standing prescriptions or daily pills but get a UTI every year and would love not to. D-MANNOSE IS YOUR BEST FRIEND. This is the game changer for the average woman who doesn’t need what I need to stay healthy. There are very pricey powdered drinks out there promising you an end to UTIs, and the main ingredient in all of them is just plain old D-Mannose. Take 1500mg before you have sex. Take 1500mg afterwards. If you’re an average lady, you’ll never have another UTI. The mannose adheres to E.coli and flushes it straight out of your urethra. Good riddance! Happy sexing.