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One UTI 3 years ago and still symptoms
July 25th 2019, went to CVS minute clinic for Uti symptoms. Dipstick indicated infection, prescribed 3 days of Macrobid. I continued to worsen and called my urologist ( Had kidney stones in the past but hadn't needed urologist since then ). She cultured the urine and it came back negative. I continued to suffer tremendously. Went to Urgent care, another urologist, my gynecologist and back to Urgent care. All cultures showed "mixed flora" and I was told I did not have an infection. No other suggestions were offered. I lost 30lbs and could not leave my house. I thought death was going to be the only escape though I was not suicidal. My primary put me on Lexapro and Ativan which helped to deal with it however I gained a lot of weight. My doc would not consider changing that medication. I'm still dealing with constant urge to urinate and sometimes pain. It ruined my mental health and marriage. Went through divorce and moving which caused a lot of stress. I asked for Pelvic PT referral. Tight pelvic floor muscles, given stretches to do. 5 sessions and discharged. That was right before Christmas. Still had symptoms. Then end of Jan had two symptom free weeks and couldn't believe it. I suddenly realized just how much this had affected my life. I felt free and normal. Then I woke up with the familiar bladder pain and it's been a struggle since. I saw a urogynecologist in Boston who said to use a suppository of Valium and Bacolfen but after 2 nights i was in the bathroom constantly ( hadn't needed to use the bathroom at night in a long time until then ). I was also told I could not use oral Ativan and the vaginal valium because they are both benzodiazepines. I could not sleep at all and it's hard to function as a teacher with no sleep. Last night I went back to Ativan and stopped the suppository. I am depressed and desperate for help. I have tried acupuncture, energy healers, Reiki and chiropractor. I have only been diagnosed with PFD not IC. Mostly it's urge to urinate, not usually pain. I have read all the message boards on Chronic UTI which I'm told is not what I have, and also Embedded infections which my doctors don't believe are possible. I'm so confused and lost. Any suggestions or direction would be life altering. Thank you.
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Amitriptyline, Hydroxyzine, and Elmiron are the three typically prescribed.
I’m reading The Body Keeps the Score by Bessel Van der Kolk and it’s fascinating and yet I wish I knew I had been experiencing trauma throughout my life. I just always assumed that life is stressful and bad things happen but you keep going. I teach Health education and stress management and still - never realized how much I was carrying around with me. So I do believe this is part of the puzzle.
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4 Reactions@piper777
I’m like you. I just kept piling on stuff instead of slowing down and dealing with it.
I also didn’t have anyone close enough to talk to. There were friends but I didn’t want them to tell their spouses- which happened.
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6 ReactionsI'm so sorry you are going through this. It sounds like you could be suffering from IC. Back in 2019, I had UTI infection after infection. Wrong antibiotics for those infections at times. I was miserable! Could hardly function from the constant pain. What helped me was when my urologist PA started me on methenamine (prescription) and D-Mannose (over the counter). I was on that regimen twice a day for 3.5 years until my kidney eGFR started decreasing (not good). I found out Methenamine can be hard on the kidneys but I have to say that the combo of that regimen is what allowed my bladder lining to heal. I am now cut down to only one D-Mannose per day (in the A.M.) and half a Methenamine per day (in the P.M). I am still free from pain & no UTIs since 2019). The PA also told me I could try Prelief (over the counter), if needed (I haven't needed it). You might try taking that to see if it might help decrease your pain, especially when eating or drinking anything known to irritate the bladder. Best to you!
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2 ReactionsHi I know this is super old and you probably don’t login anymore, but I wanted to ask if you happen to see this question, did you get better, how are you and if you got better did you ever find out what exactly was up?
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1 ReactionI've gone through a lot of the same as you, after many tests (MRI, Catscan, etc) ruling out certain things, was told I have hypertonic pelvic floor disfunction. Basically I hold stress in my pelvic area. I have more constant pain, and less feeling like I need to go pee all the time like you do. Basically it feels like I have a UTI all the time. Also recently found out I have an area in my spine where there is moderate to severe narrowing, pressure on a nerve that is causing pain, numbness, tingling in my left leg. I read that area of the spine S1 when nerve is affected causes problems with bladder-urinating and constipation problems. Im so sorry to hear this caused your marriage to end, and I can see why for how it affects a persons mental health, Its debilitating, and has affected my life so much also. I have tried the valium vaginally and didn't care for it, am on one Ativan daily to deal with the anxiety this causes (been a terribly anxious person my whole life even before this) Tried 4 different antidepressants and had to stop as I can't tolerate the side effects. Haven't much of an appetite and struggling to keep weight on. I hope you find relief soon and get your life back the way you'd like it.
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2 Reactions@piper777 I read about the bladder lining becoming damaged from reoccurring UTIs, little cracks in the surface (the biofilm, lining of bladder) bacteria are able to "hide out" in these cracks during a course of antibiotic, then come back out and multiply once the antibiotic is done and over with.
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2 ReactionsI had this problem many years ago. I had a bladder infection and was given macrobid. Then the doctor called and said the culture was mixed flora and discontinue antibiotics. They always said it was a bladder infection on a dip stick test, but mixed flora and not an infection when cultured for years. My urgency and discomfort lasted 7 years. They checked for or treated everything from IC to pelvic floor dysfunction. I went in the hospital for something unrelated, and they did a urine culture and decided to treat me with IV antibiotics. Bactrim, but changed to macrobid after susceptibility testing. The urgency and discomfort went away and never returned. IV antibiotics worked better than oral. Doctors should never tell you to stop antibiotics mid course. I believe my bacteria were not wiped out originally, and caused a chronic UTI.
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3 ReactionsIn addition to accurate diagnosis & treatment (appropriate antibiotics) it is important to follow up with replenishing good bacteria when the treatment is completed. This would be probiotics such as acidophilus, yogurt, Kefir …..etc.
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1 Reaction@chutch we members shouldn’t diagnose or prescribe but I agree with you that @piper777’s situation does sound a lot like IC. You reminded me of an important suggestion when you said that your doctoring is at University of Iowa. I think a lot of the time better care can be found at a teaching institution. @piper777 do you have access to anything like that?
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