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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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The Keflex worked for five days while on it and six more days following the five day regime. I felt so good for those 11 days. It's now 3 AM and I've been up four times, bladder pain, burning and poor flow have begun again. Urrrr.... it's back! I guess I need a LONGER course of Keflex! This Klebsiella will not die!
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2 ReactionsFrankly, not sure how this blog works. I feel for all you with your urinary and bladder issues! Prayers out to you all!
I have been on a protein pump inhibitor (PPI) for several years now to help with my GERD (gastro-reflux disease).If I stop taking this, I am wondering if it is possible my urinary tract would improve as used to get frequent UTI's and now just have a irritating sense of urinary urge which the prescription mybetriq is not really helping. Some UTI's were caused by Klebsiella which I see someone mentioned. I stopped getting UTI's currently but still have this irritating feeling of an urgency, but not painful or burning . My urologist made a comment about the PPI's possibly being a cause, but prescribed this mybetriq which is for Overactive bladder. I have had cystoscopy , renal ultrasound and CT urogram and nothing found.(grateful for that). Any feedback would be helpful. MY GP called it recurrent cystitis back in 2019. No one seems to be able to give me relief and not sure really what I have. I also do not look forward to going off the PPI's, if recommended. Frustrated!!! (Going on since 2017).
Any of this familiar to anyone?
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2 ReactionsHi, I have been on Nexium for my Gerd and digestive issues for over 15 years. I have been experiencing UTI's during the last 10 years. I have never had a urologist tie the two together. This is a new one. I also would find it difficult to eliminate the NexIum.
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2 ReactionsAll I can offer to all of you is sympathy for your frequent UTIs. A friend of mine suffers these and I have had some in the past. They are rotten! As for interstitial cystitis, my mother suffered from this for many years. She had 20 laser surgeries for removal of lesions in her bladder. I found the name of a drug for her in our local newspaper and she showed the article to her doctor and he said they would try that and see how that helped. It did help her. The drug was Elmiron. I hope this is of some help to those who suffer from this terrible problem. With all good wishes, @joybringer1
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1 ReactionAgree! Have diaphragmatic hernia, so have GERD.
I have tried stopping nexium but that is worse than these urinary symptoms!
So far myrbetriq ER & Alkaline water with pH 9.5 are helping.
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1 ReactionHave you been told about foods to avoid. Check out Sally Norton and her book on Toxic Oxolates.
Please provide the link to this discussion. Thank you.
@pinksky4u I’m sorry I made that comment a couple of months ago and I don’t know how to find that discussion again. I’m also not good at providing links. That is something I need to learn how to do. I’ve got a meeting this Friday and will ask some of the more experienced volunteer mentors for help.
I have no idea if PPI's have an effect on frequent UTI's,
but i can sympathize with you about how difficult it is to get off PPI's. Basically after my gallbladder out i continued to have stomach issues so i was put on the first PPI ( before Nexium). I was on them 15+ years also.
In 2015, with all the negative news about staying on that drug for years - i decided to stop them and see if i could control GERD etc by diet alone.
Getting off Nexium took 2-3 months and included lots and lots of stomach pain!! I was determined to persevere and I am so very happy I did.
I still have Gerd and hiatal hernia, but NO Nexium. 😁
Good look . I know how painful UTI's are and am still struggling with that problem.
I’m sorry to hear that. I had to also self cathing for about a year and. I wasn’t a fan ! I just take low dose antibiotics every night a take my time going to pee. A lot of my retention was medication.
Thank you
K H