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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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I have having the same thing . The very same thing you are going thru. I have notice eating anything sweet makes it worse, and drink a lot of water at once helps but just drinking water through out the day keeps me in the bathroom. I think the nerves have been damage from UTI or the meds. Seems no one knows what to do. Anybody got any ideas to how to get over this?
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3 Reactions@piper777
You must be miserable! I’m sorry none of the specialists have been able to help you.
Have you had a cystoscope done- where they can look inside the bladder?
Also- there is also a test using fluoroscopy when they can watch what happens when the bladder empties itself.
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1 ReactionThank-you. I am scheduled for a cystoscope net month. I did have a CT scan that showed nothing. So the scope is the next step. I haven't heard of the fluoroscopy but that might be on the agenda too. I am nervous because all I have read about embedded infections. If that is the case, all these other things won't help. All the docs I have seen don't believe an infection can embed in the lining of the bladder. There is a test called Microgen DX that is a PCR test that looks at everything at the DNA level to see what is in your bladder. Apparently a lot of infections are missed by the typical dipstick and culture. This is not something my docs will sign off on. Frustrating.
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1 ReactionHi there. I’m so sorry for your pain journey. I know it well. I don’t have much time to write at the moment, but I would say you have IC. It’s typically an urgency/frequency thing, like you describe, but I have retention and lots of pain. I’m in the 5%. I doctor at the University of Iowa. I suggest doing a search for doctors who treat IC in your area. There are medications that will prove more helpful and perhaps bladder distillations, like I do.
Take care,
Christy
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3 ReactionsI'm sorry to hear this. I had joined a group on FB - Recurring UTI's /Chronic UTI and what I found is that thousands and thousands of women are suffering with no answers except: long term antibiotics. They use a Microgen DX test and have their doc sign off on it. The results show bacteria that doesn't show on a regular culture. It also shows which antibiotics the bacteria are vulnerable to or resistant to. It sounds great except that the next step is high dose, long term ( sometimes 2 years ) antibiotics. What I have seen over the time that I had been in the group is: 1 ) Women start taking the antibiotics, take another Microgen test to see if it's working and 2) find other bacteria showing up 3) start taking multiple antibiotics in combination and 4 ) get very sick. There is one particular doctor in the south that they all go to and they love him. He's compassionate and will prescribe long term abx. My doctor wouldn't sign off on the test and said she wouldn't prescribe long term abx and I agreed I would not want that either although I do wonder if there is a bacteria ( or fungus ) that a regular urinalysis isn't picking up. I have never not recovered from a UTI with a course of antibiotics although I am usually given 7-10 days. I was only given 3 days and I wonder if that caused the issue. It doesn't matter what caused it at this point, I want to move forward. I have begun therapy to deal with all this because mentally it has taken a toll.
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1 ReactionThank-you. I have been reading about it - a lot. I have changed my diet and try to reduce stress. I'm considering asking about amytriptaline . I don't typically have pain thankfully, just the urge to empty my bladder. I think that's why the Ativan helps, it relaxes everything.
Thank-you for responding.
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1 Reaction@piper777
Great that you started therapy.
I did that too some years ago when my illnesses overwhelmed me.
@piper777
Just want to mention that the test I mentioned is called VCUG- Voidingcystourethrogram.
It’s much more common in children but it can happen in adults too and at times be cause of repeated UTIs.
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2 ReactionsThanks for all the information.i will check it all out.
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1 ReactionHas anyone here tried D-Mannose? Years ago I had a really bad reaction to an antibiotic prescribed for a UTI. Because I still had the infection I looked for some alternative. I found D-Mannose and haven't looked back. I still get frequent UTIs, but I just ramp up my usage and everything resolves in two days. I use the NOW powder form.