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Just diagnosed with Bladder Pain Syndrome / Interstitial Cystitis
With a history of 4-6 UTI's a year for over 8 years, I have been very frustrated with my medical team's inability to uncover the "why". 2022's UTI's have progressively gotten more frequent AND progressively more painful in the lower pelvic region. The pain includes the typical UTI systems of burning, feeling of frequent urination, but not being able to actually pee. In the last three months, I have had two emergency catherizations due to extreme urine retention. The UTI's seem to be recurring regardless of antibiotic treatment. Klebsiella is a new bacteria showing up in my cultures beginning in November, 2022. Since then I have had 6 UTI's. On Christmas Eve 2022, I had symptoms of a UTI during the day, by bedtime I had level 7-8 lower pelvic area bladder pain. I could not sleep. Took Tylenol, AZZO, and finally started Augmentin 875mg 2x/day for 7 days on my own knowing I was treating without a culture or doctors direction. I have had two more cultures done since then due to painful bladder (painful to walk) and other UTI symptoms. First one came back positive for Klesiella and e-coli. I was treated for 8 days with Augmentin. Bladder pain persisted and 10 days later another culture done, but came back negative for any infection! My bladder pain level is a constant 5-6, like walking around with a migraine headache in my pelvic region.
My PCP's physicians assistant, who I saw yesterday, suggested Bladder Pain Syndrome / Intercystal ?? as a possibility. Not much coming up on this Mayo site. A couple presentations showing up on You-Tube. Does anyone have this condition? What has helped getting the inflammation under control and ease the flare ups of bladder pain/UTI's?
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I am sorry to hear about all your suffering and I don't understand why there have been no serious tests performed. I am not a physician. But I have a very good PCP. I too had a very painful UTI and rt flank pain of my kidney Have you have a Cat Scan to check your bladder and kidneys for growths. And MRCP to check blockages in the ureters or urethra. I have been referred to a Urogynecologist. My appt is in March 2023. I am on a cancellation list. I also wiil be going to a nephrologist to check my kidneys. Cysts were found on one kidney and I had crystals detected in the urine culture. Probably had a kidney stone.
So many variables but you could have a blockage somewhere. Ask for these tests. Hope the information helps. Good luck!
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4 ReactionsI'm having kidney surgery on March 2nd. And I'm nervous about what they will find.
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3 ReactionsI'll be thinking of you this week. Being nervous about surgery is justified. Try and keep positive thoughts. Let us know how you are doing.
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2 ReactionsMy struggle with extreme bladder pain and UTI's is back. I've had two infections in the last 6 weeks. Culture came back as Klebsiella pneumonia. My urine went out for culture Tuesday and in the meantime symptoms dramatically increased, terrible bladder pain, difficulty passing any urine, etc.
I did have a break from the UTI infections, but it only lasted 6 weeks. I am wondering if this Klebsiella is tough to get rid of permanently. Anyone experience this bacteria and efforts to knock it out completely? I was in so much bladder pain last night, I thought of taking an OxyContin I had in the house from my recent hip replacement surgery or going to emergency room. So frustrating .... doctor sent for Keflex prescription. I'm sure it will work for awhile.
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1 ReactionProteus Mira bill is and klebsiella are both bacteria which can live in kidney stones.. did you get a biopsy of your bladder wall? Or have you seen a urologist? Not confident with keflex.
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3 Reactions@mom2204 Thank you for this information. I started with a new urogynocologist several months ago. Had been seeing just a urologist for over a decade, who just kept prescribing antibiotics for my chronic UTI's. I have not had a biopsy on my bladder wall, nor have I seen a nephrologist. I will bring up biopsy with my new urogynocologist and start looking for a nephrologist. Just the type of feedback I was looking for... thanks again.
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2 ReactionsTo those posting in this discussion, there is another discussion about chronic UTI, kidney / bladder stones and pain. The threads are similar and folks from both discussions may find some helpful information.
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1 ReactionI am in the same boat….no one thinks out of the box here. I connected with UGora a product out of California thinking I would go all out in PREVENTION. I will LET YOU KNOW IF I AM ON THE RIGHT PATH
I FINALLY GOT A REFERRAL TO A UROLOGIST AS I THINK. BLADDER CANCER… PLEASE RULE THAT OUT INSTEAD OF SUPPLYING ME WITH ANTIBIOTICS. I CANNOT GET IN UNTIL OCTOBER.
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2 ReactionsI'm feeling better now, it was cancer and they said that they got it all removed.
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3 Reactions@mom2204 I can say that I have been on multiple low dose regimens of various antibiotics over the decade I have been trying to solve my chronic UTI's. I also had two bladder suspensions as an answer to my problem being attributed to urine retention. Neither the daily low dose antibiotics, nor the bladder suspension surgeries worked and so, my UTI's progressively have gotten more frequent and now, more with severe bladder pain. It certainly is frustrating. In addition to pain and my need to be catherized, UTI's cause low energy, very poor sleep (always having a sense of urgency) and a body that constantly has antibiotics running through your system. The malaise and the pain cause a great deal of disruption in the function of daily living. What would sound like a minor problem is NOT minor.
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