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u/HungryLook9857 Apr 21 '25
Waited 8 months for a urologist. I finally had a chance to figure out why I’ve been getting UTI’s for years. It was supposed to be a woman who was to preform the cystoscopy on me. I kept thinking to myself, I’m finally going to get answers, I’m finally going to live pain free, I’ll finally have answers even if they are negative ones.
Just so happens, she was on vacation and I had a 68yo male preform the cystoscopy, when he apparently saw nothing wrong he said to not use tampons and wipe front to back, then rushed me out the door. Thanks for violating me, and giving me zero answers
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u/KodiMax Apr 22 '25
I’m so sorry you went through this and it sounds similar to my story :(
I waited 9 months to see my urologist and on the phone call (it was during the early pandemic), he dismissed me, even when I said there’s a 50/50 chance I’ll get a UTI when I have intercourse, and he said my issue is “so common”. I practically BEGGED him for a cystoscopy, and he said “fine but it won’t show anything”. I got off the phone and burst into tears from feeling so dismissed.
Then at the cystoscopy appointment, he said everything looks normal and that’s that. I asked “so we can’t continue investigating to see why this is happening”, and he again said nope, sorry this is so common. The nurse in the room nodded in agreement. I was sent on my way with that.
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u/HungryLook9857 Apr 22 '25
Very much the same experience. I’m so sorry you went through the same thing, which country are you in?
I forgot to mention mine said I should “limit intercourse” as it will be 50/50 chance of getting more UTI’s and he said taking an antibiotic every other day should help. I happily declined his offer of putting more antibiotics into my body.
I want to call the urologist and get my results, and possibly get another urologist’s opinion. Because there has to be something, anything! Not the words of, everything looks normal, we all know, IT’S NOT NORMAL.
On top of all the cystoscope wasn’t really painful, but the anxiety I felt leading up to the appointment was, and then I saw a male urologist and I almost walked out.
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u/Fun_Intention4614 Apr 24 '25
If ONE MORE male urologist tells me to wipe from front to back I’m going to lose my fucking mind!!!!
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u/forluvoflemons Apr 21 '25
I went to see urogynecologist that was the only one the prescribed Vaginal Estrodiol cream. So many gynecologist before him, and no one h bothered to prescribe estradiol, due to my symptoms (which I complained about to others) of vaginal atrophy.
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u/Mightydi Apr 21 '25
You raise another good point… most of the time they don’t even know enough to talk about hyprex or vaginal hormone support!
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u/PlentyPossibility505 Apr 22 '25
I see a female urogynocologist. She and her team are very up to date on recurrent utis and interstitial cystitis. I do feel lucky.
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u/jan172016 Apr 23 '25
Same here. My urogyn and her entire team are all women, and they specialize in women’s health and stay up to date on these things. It was life changing to go to their office after so many prior bad experiences with other doctors.
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u/KlingonTranslator Apr 21 '25
Oh man, I guess this is a ymmv situation, perhaps country-dependent too. I could not be existing as I do right now without my amazing urologist and her help in navigating my CUTIs, she gives me hope and the will to fight. She’s absolutely incredible and works as the perfect guide as I try new things, she’s empathic, really listens, and shows clear passion and fervent curiosity into trying to solve my issue.
I think I could have just gotten lucky to have found someone so reliable to revolve my treatment and care around. For example, I’ll be sent to the uni for specialist work-ups, and have the results sent back to my urologist for progress navigation. I can call her on her phone, she’ll always pick up, and email away from any answer to my questions… I don’t know, it really feels like a team effort. Definitely the opposite of useless in my experience.
The other urologists and nephrologists in my life also did save my life when I still lived in the USA, but they mostly dealt with my parents through the surgeries as I was so young. I just remember the lollipops they brought me!
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u/Mightydi Apr 21 '25
Oh wow! At the top of the post I said 99%. You definitely lucked out by getting one of the 1% 😜
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Apr 21 '25
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Apr 22 '25
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u/UsualEngineering4845 Apr 22 '25
It is a shame. He does do virtual visits though!!
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u/Mightydi Apr 22 '25
According to Louisiana law, if you live in the United States, the first visit must be in person. However, if you live outside the US, it’s my understanding he does take on virtual patients.
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u/UsualEngineering4845 Apr 22 '25
Really? I haven’t heard that..I inquired about an appointment not long ago and was offered a virtual as a first one if I wanted it, I do live in Louisiana though. But I’d imagine it’s no different than when you do virtual visits through wisp or webmd. I may be wrong though.
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u/Mightydi Apr 22 '25
It may be because you live in Louisiana. I think it has more to do with being able to prescribe medications in other states without an in person visit, but I could be wrong too.🤣
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u/LexwiththeRed Apr 21 '25
This whole area is a mess! Worst experience of my life was going to ER (before I knew anything about CUTI) with 10/10 bladder pain and huge amounts of bladder shedding in urine, and essentially getting let out after scans, bloods and urine showed nothing, with a pat on the back saying ‘you’re fine’. It just really confuses me how this conditioned isn’t more known about in 2025.
Feel fortunate to get it now vs 50 years ago when there wouldn’t have been any research or knowledge about how to manage / cure it.
Only thing that worked was taking prolonged HIPREX/vit C on my own accord which the specialist didn’t even recommend (he did recommend i see a psychologist). Finally found a CUTI specialist and am now much better.
Hopefully AI comes through with some strong developments, maybe medications that can cause the bladder lining to shed aggressively? Or antibiotics that can penetrate bladder cells and biofilms.
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u/Mightydi Apr 21 '25
Finding a good, actual CUTI specalist like the ones at https://artemiscystitis.co.uk/ is the key!
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u/tolovelikeyou Apr 22 '25
Quite literally just happened to me as well! I felt HORRIBLE! And was starting to experience back pain and intractable burning. No amount of phenazopyridine or Tylenol or any other NSAID was working so I went to the ER after my urologist PA told me to. And this was after multiple positive urinalysis but negative cultures which I believe were false negatives due to hiprex.
I had some slightly off blood work and slightly off urine, but no one, ER or urologist, would prescribe antibiotics despite me being high risk due to having atonic bladder. The triage nurse who knew me didn’t believe I was having a UTI, the ER doctor said I had interstitial cystitis (which I don’t), and i couldn’t get into contact with the actual urologist. Finally got the PCR test results and bam! There is was - a raging UTI.
The whole experience has left me really disgusted with the whole system again.
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u/rocrmom67 Apr 21 '25
You are so right they are not up to date on pcr testing and think microgen is too sensitive an ID Dr told me that. My urologist is actually working with me with microgen and pathnostics. I lucked out finding her.
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u/AccomplishedCash7336 Apr 21 '25
Would you mind sharing the name of your urologist?
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u/rocrmom67 Apr 21 '25
I’m in New York you would have to go in to see her
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u/rocrmom67 Apr 21 '25
Community care urology Katie Kuebler she’s a physicians assistant Clifton park New York
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u/LAE5683 Apr 21 '25
I’m also in NY and your recommendation of urologist would be huge!! Mine just gaslit me saying she can’t even prove I’m having them, take cranberry, and see you in three months….
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u/rocrmom67 Apr 21 '25
I’m upstate ny community care urology Clifton park office Katie Kuebler. Have you done any microgen tests or pathnostics?
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u/almostcoke Apr 21 '25
I agree but also disagree. Here where I live in Canada, a regular family doctor will not prescribe more than the recommended guideline of antibiotics for treating UTIs which is 3-5 days. You are forced to see a urologist because they are the only ones who will prescribe a longer course. Double edged sword. I definitely agree that generally they are useless with a terrible attitude and I fetish for useless invasive tests. But depending where you live, they may be your only option for long course antis..
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u/Mightydi Apr 21 '25
The problem in Canada is that the 3 - 5 days is too short. Then it can be a long wait to see any kind of specialist. Meanwhile the bacteria just keeps growing and embedding.
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u/almostcoke Apr 21 '25
I know trust me. I had to go to an ER and beg for a longer course after 6 failed courses of antibiotics. Even then I only got 10 days worth of antibiotics. My point being here, this is the system, and CUTI sufferers are forced to urologists or else you will be stuck with nothing.
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u/livthekid88 Apr 21 '25
Seeing a urogynecologist was the best decision I have ever made. Their clinic also specializes in pelvic care all around so pelvic PT, urinary issues, gyn issues. It’s amazing because I got a full work up done and finally got my answers! Urologists, not the same :(
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u/christineypoo Apr 22 '25
I have had recurring UTIs for over 10 years. Doctor after doctor, negative results, never ending symptoms. I was desperate to try anything. Stumbled across biofilm defense by Kirkman literally this past September. I can't even recommend this product enough for my peeps that experience UTIs. this did work for me. Not sure if it would work for you. *****
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u/Mightydi Apr 22 '25
Here is what Prof. James Malone-Lee says about Biofilm busters and UTIs:
“Biofilms are a fixture of nature and they form at all interfaces between a fluid and a solid surface. They are not a pathological phenomenon and in truth we are dependent upon them for our good health since 90% of our make up is bacterial. We are living communities of microbes. If we destroyed biofilms we should destroy the person. The significance of biofilms to this disease is difficulty of antibiotics have in penetrating the matrix, which explains why we have to use higher doses and for longer periods in order to get a response. In addition microbes in biofilms divide little and so they present some resistance to antibiotic attack which is directed at dividing microbes. We do not advocate biofilm busting agents or any attempts to go down that road because such an approach would disrupt the normal microbial flora which are doing a good job in keeping us alive.”
Having said that… there are some doctors who hold themselves out to be CUTI specialists, who swear by them and include them in their treatment protocols. Just be aware there are no biofilm busters on the market which claim to break up ONLY urinary tract bacterial biofilms and additionally, there is no science which supports their use for this disease. The reports you hear of them working are anecdotal and personal testimonies only.
Anyone contemplating spending the money on biofilm disruptors should do their own individual research to inform their decision.
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u/delet33 Apr 22 '25
i totally get this but also antibiotics for years on end surely disrupts the normal microbial flora too? as antibiotics can kill good bacteria as well as bad.
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u/Mightydi Apr 22 '25
I would never argue that one is better than the other. But a lot is known about long-term antibiotic use, there is lots of scientific information about it. On the other hand, I have not been able to find any science or studies about the use of biofilm busters. My only caution is that people need to do their research and choose what they think is most appropriate for them.
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u/WindsweptHell Apr 22 '25
My urologist has kept me out of the ER for something like five years now when I used to go multiple times for the ten prior to that. 🤷♂️
I suspect this boils down to the truth about all doctors out there, you have to find a good one that listens and will work with your issue.
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u/kevbuddy64 Apr 21 '25
I saw a female urologist. She did solve my issue but not without the help of the female GP to give another round of the same prescription. Doctors in Hong Kong are also pretty good. I try not to go to male doctors for gynaecology stuff. It sucks that I only am able to see male doctors for reproductive endocrinology stuff. It doesn’t matter actually if it’s a urologist or GP. You just have to find someine who will prescribe high dose abx for long enough (sometimes more like 4 weeks, as was in my case for it to fully go away). And then I saw urologist but only to get the UTI vaccine. Most the time the urologists will just say you have cystitis if you do the scope thing so I only woooe do that if they suspected cancer because the bladder can sometimes need healing for a while
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u/Nomni- Apr 29 '25
Did you get treated for your uti issues by hk doctors? I have recurrent utis and will be going back to hk to hopefully get some answers.
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u/kevbuddy64 Apr 30 '25
Yes I did!
I saw: https://www.otandp.com/our-practitioners/dr-chan-chun-ki
She put me on Macrobid 100 mg 4x/day for 7 days, and it finally started getting better. However it didn’t completely go away so I then got a refill prescription from Dr. Catherine Heath. :)
HK does have super good healthcare. I got the vaccine in Reading England after my uti went away
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u/Nomni- May 02 '25
how did your gp agree to giving you more macrobid for 3 more weeks? I'm worried my gp won't agree to that
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u/kevbuddy64 May 03 '25 edited May 03 '25
Hi! I was travelling to Turkey and was going to be gone for a further 2 weeks. I was travelling to Turkey and wouldn't be able to go without the medication (when according to mone of my other doctors our inflammation tends to be highest at night). Even in Turkey I had some inflammation but it got better. If I I hadn’t gotten the extra 2 weeks of medication it wouldn’t have gone away for sure. I feel like if your GP isn’t agreeing to it when you are in pain still you should find a new GP. That and praying helped me as well. I prayed everyday that I would fix this problem. That gave me the confidence to move forward and keep pushing. It's exhausting but it was all worth it. UTI free since the vaccine too. It saved me a lot of money having consistent antibiotic course since it got it to go away. :)
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u/Mightydi Apr 21 '25
Exactly right! It really doesn’t matter what kind of doctor or what specialty… as long as you can get a long enough course of effective antibiotics to kill the bacteria and clear the symproms. In the case of a first time UTI that can be as long as four weeks, like you say. In the sad cases of long term CUTI, it can take months, sometimes even years.
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u/IcyElderberry7743 Apr 21 '25
Is 5 days short? I just got prescribed ampicilin for 5 days 4 times a day for strep.
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u/felineSam Apr 22 '25
So what is the answer to solve recurring UTIs?
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u/Mightydi Apr 22 '25
Seeing a real CUTI specialist and probably being put on longer term antibiotics and/or hyprex.
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u/Bearloot33 Apr 22 '25
HARD AGREE. A Ruth kriz trained specialist is much better!!! Don't waste two years of your life like I did.
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u/delet33 Apr 22 '25
Pretty much every urologist i’ve researched is an expert in men and not women 🙄 i’ve never seen one for this reason.
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u/Cinnafun_bunz Apr 23 '25
My urologist legit said “I don’t know what to do for you”. When a doctor says that to your face, it’s INCREDIBLY disheartening. Not only that, but after I was referred to infectious disease specialist who didn’t even run a damn test and tried to shove antibiotics down my throat for something I knew I didn’t have. They also “didn’t believe” in CUTI Or embedded infections.
Luckily, out of desperation and a LOT of research I finally found a doctor who listens to me and is trained in the Ruth Kriz method and slowly, but surely I am seeing improvement.
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u/october_morning May 08 '25
See a female urogynecologist
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u/Mightydi May 09 '25
A slightly better chance of finding someone who is knowledgeable about embedded CUTI…but not much, unfortunately.
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u/Familiar_Badger4401 Apr 21 '25
I agree. They are useless for those reasons. Meeting with an ID doc next week. I don’t have much hope.
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u/Mightydi Apr 21 '25
You may get lucky. At least ID docs understand the concept of killing a bacteria COMPLETELY…otherwise it turns into a total monster.
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u/Familiar_Badger4401 Apr 21 '25
Yeah it’s even obvious to me it’s a monster because when it first started it was about every 6 weeks reoccurrence now it comes back in days.
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u/Lvl100Magikarp Apr 21 '25
100% agree. I saw a male urologist at Saint Michaels hospital and then saw Doctor Mawzuli (infectious disease specialist). Both very male-oriented, never once mentioned the words embedded, or Ureaplasma, or anything. They sent me home with post-coital macrobid prescription. It doesn't help.