Too many P's, not enough Q's -- Urologist Rec for UTIs
February 26, 2019 11:01 PM   Subscribe

My sister has had chronic bouts with UTIs for decades. Doctors think she's nuts if she requests antibiotics for symptoms she has even when a test comes back negative. She knows her body and definitely knows what's up with her lady business. Cutting to the quick --- Does anyone have recommendations for a female urologist who LISTENS to her patients in the Portland, OR area?

I recently came across this article in the Guardian that gave me a clue as to why UTIs can be persistent in some people. UTI tests miss bacteria that have hunkered down in the bladder which can burrow into the lining, so that after a round of antibiotics it quickly resurfaces to strike again. It's diminished her quality of life and any step I can take to help find her a doctor who cares and will work with her on continuous rounds of antibiotics or other strategies while trusting her word are paramount. She has hit her breaking point of doctors who don't listen to her and I'd like to give her a winning recommendation to set her on the path to wellness.
posted by pdxhiker to Health & Fitness (11 answers total) 3 users marked this as a favorite
I don’t have local physician suggestions, but taking d-mannose regularly and not eating chicken has helped my bff tremendously. She was in the same boat and even with extremely strong antibiotics as well as getting urine cultures every time (the bacteria had become resistant to many antibiotics) it was the combo of no more chicken and taking d-mannose that finally eliminated the chronic infections. Your sister has my sympathies. It’s an awful situation and so many doctors, even specialists, don’t believe their patients.
posted by quince at 11:42 PM on February 26, 2019 [1 favorite]

I was in a similar position to your sister. I also had an infection that would never completely go away. I had 11 'UTIs' in a year. In the end, I got a good doctor who put me on 6 months of a low dosage of antibiotics. That adressed the actually bacterial infection.
However, I was still getting similar symptoms
to UTIs. Turns out all the infections and peeing had done damage to my bladder. The side walls of the bladder apparently would run together generating the need to pee.
I went to a physio who specialises in bladder issues who helped me improve all the muscles around the bladder and I followed a particular routine to improve the bladder itself. Three months of that and I was pretty much better.

I am I Australia so I don't know who in America would be the equivalent, but I hope the info helps. It did take a while to get a doctor who noticed. In the end what helped was collecting the whole history and presenting that collective. The focus was then on why they kept reoccurring. Not the immediate infection. Then working on healing the bladder afterwards.
posted by daffodil at 1:33 AM on February 27, 2019 [4 favorites]

If you can find a physical therapist who treats pelvic floor dysfunction in your area , call them and ask which urologists they recommend. Anyone willing to prescribe PT for urinary issues should be the kind of doc who will listen and do some extensive testing to figure out the problem. (In my experience, anyway. PT turned my bladder pain issues around.)
posted by corey flood at 6:24 AM on February 27, 2019 [1 favorite]

Check your memail !
posted by elgee at 6:40 AM on February 27, 2019

If you still don't find anyone good, two things to try are to write the people/programs mentioned in the article to see if they can give you some leads or connect you with someone, and to look up the specialists at hospitals in the area, who might be more aware of the research.
posted by trig at 7:44 AM on February 27, 2019

I actually have met a researcher in Portland who specifically studies persistent UTIs and the bladder micorbiome. Happy to pass on the contact info if you would like to MeMail me.
posted by forkisbetter at 8:28 AM on February 27, 2019

It could very well be interstitial cystitis, which feels pretty much identical to UTIs but returns negative cultures. There are a broad range of treatments, including antibiotics which might be why she gets some relief and then it immediately returns. However, things like cranberry juice which help UTIs can further irritate and exacerbate IC. She should see uro-gyno to be evaluated by someone equipped to actually listen and investigate further.
posted by stoneweaver at 10:05 AM on February 27, 2019 [1 favorite]

Something like this happened to me, but fortunately I was sent to a nephrologist, who had me complete a 24-hour urine catch, because now it looks like I may finally have an answer and treatment for a similar-sounding issue, because my ongoing 'UTI symptoms' without any evidence of infection appear to be related to mind-bogglingly excessive urination. Based on my experience, if your sister gets this test, I suggest asking for an extra sterile urine container at the start - sure, it's already the size of small gas tank, but if the output is excessive, finding another sterile container after labs close for the day could be a challenge.

One difference in my experience is that I had a wonderful urologist PA, who really took the time to listen and explain how bladder muscles work, how yoga and probiotics could help, and how antibiotics could make it worse. Their kindness, the Uribel, and the abdominal ultrasound were very helpful in ruling out some bladder-related issues, but ultimately, their focus on the bladder may have missed the actual causes of my symptoms.
posted by Little Dawn at 10:09 AM on February 27, 2019 [1 favorite]

And as a follow up, I use a lot of qualifying language in my comment above because I'm still waiting on test results, but I also wanted to mention that I have a lot of empathy for just wanting some antibiotics to knock whatever it is out once and for all, and how harsh and dismissive the responses from some medical providers can feel. And fwiw, interstitial cystitis is a diagnosis of exclusion, so other issues are explored first, and "[t]he AUA guidelines also recommend an early assessment of pain, urinary frequency, and urine volume, to help evaluate the effectiveness of later treatments."

The kindness of the urologist PA was empowering to experience, but after my visit to the nephrologist, the preliminary results of the first test and the rapid orders for more tests, I have also been very appreciative of the quantification of my symptoms, because it might make a significant difference in my healing process. I very much hope your sister can be similarly heard and able to get on the path to wellness soon.
posted by Little Dawn at 3:18 PM on February 27, 2019 [1 favorite]

OB/Gyn here: Nthing the suggestions above that she may be experiencing interstitial cystitis, or what is often now called Painful Bladder Syndrome (PBS). She should go see a urogynecologist or urologist if her primary care or gyn is not being helpful (any gynecologist worth their salt should pick up on these types of symptoms within a year at the latest if shown multiple negative cultures, so perhaps she's seeing an overworked primary care provider, or has seen so many different people no one has put the pieces together despite the fact that she herself knows she's had multiple negative cultures).
posted by eglenner at 4:19 PM on February 27, 2019 [1 favorite]

Thank you all for all your suggestions and sharing your experiences and wisdom! It's been immensely helpful to hear everyone's stories. I think we have some new leads now to find her some help. Thank you MeFi denizens!!!
posted by pdxhiker at 2:18 PM on March 1, 2019

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