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 It all started with a simple UTI

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Posts : 2
Join date : 2016-02-22
Location : Adelaide

It all started with a simple UTI Empty
PostSubject: It all started with a simple UTI   It all started with a simple UTI EmptyWed Feb 24, 2016 1:52 pm

Hi, and thankyou for taking the time to do this research for all of us.
I'm a 41 year old female with no history of UTI's. No history of anything actually. I was the healthiest specimen out there. Then I had a pap smear March 2015, with dubious infection control procedures, and the next day I had a raging UTI, only the second one in my lifetime. Was prescribed trimethoprim while the results came back which were positive to E.coli and sensitive to most things. The trimethoprim didn't work and my infection spread to my peri urethral glands on the underside of my urethra, developing a mass that produced pus. Was put on Cipro which helped with the infection. However urine samples all clear from then on. Every time I tried to stop the Cipro the positive bacterial sample would come back, leading me to believe mine started with a strong infective component. Had a cysto and MRI to check for a communication which both were clear. Was left in hospital for 3 days in intense pain after cysto, my pain levels were about an 11/10 for 4 months. Was prescribed Endep and vesicare and Ditropan and all the others to try ease the pain. Tramadol didn't work, neither did morphine or the other "stronger than morphine" one.
Was checked for prolapses etc and went to pelvic pain SA who were great. Saw a pain medication specialist, psychologist, and physios. Went to a new urologist who upped my endep dramatically and this is when I started to see some relief. Most days at this stage I was a 7/10 pain level. Both my new GP and urologist and infectious disease specialist agree there was an infective component. I was put on long term Cipro for 6 months, but a month in I got clostridium and had to stop it.
I was diagnosed with PFD which in hindsight , I have had forever since I can remember. It never caused me too many problems until I was in so much pain and so tensed up those muscles like crazy. Recently my new uro did another cysto and found the bladder clear but I had urethral bruising and bleeding. My symptoms have always been urethral spasm and intense nerve pain. The pain goes through to my bum vagina and feet/legs. The endep has dramatically improved this. I am on 45mg of endep as we speak, but was up to 60mg. I now take d-mannose each day and a prophylactic trimethoprim post coital. My pain is about a 3/10 most days . Sometimes worse sometimes better but it's always there. I have urgency but no frequency as such. My bladder capacity is good at 850ml.
The IC diet is also what has helped me the most as I have definite triggers to foods supplements and drinks.
I still have a draining skenes gland but it of normal flora now. I also had a redo of the MRI particularly of the urethra and all was normal.
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Posts : 64
Join date : 2016-02-15
Age : 42
Location : Leicestershire,uk

It all started with a simple UTI Empty
PostSubject: Re: It all started with a simple UTI   It all started with a simple UTI EmptyTue Apr 05, 2016 2:00 am

Why is it that the majority of our cases start out with uti's. This is crazy we need a cure for all this. There has to be a simpler explanation. How are you?
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