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Mep



Posts : 4
Join date : 2017-03-28

PostSubject: I'm new here    Tue Mar 28, 2017 7:00 pm

Hi Everyone

I've always had a lot of UTI's in the past being diabetic. In fact that is how I got diagnosed as diabetic in the first place as they found I had a UTI. So mid 2013 (the year I turned 40) I thought I had yet another UTI as all the usual symptoms such as sharp stabbing pain, burning, frequency, pressure, urgency, aching, retention, and weak urine flow the worse the symptoms were. I went along to my doc to get checked and the urinalysis result showed high leucocytes only and no other pathogen found. To cut to the chase about 6 urinalysis results later done over a couple of months and every single one of the results still showed the same thing. I wasn't getting any relief from my symptoms either despite being put on antibiotics "just in case" there is a bug that hasn't been picked up. So my GP decided it was time I was referred to a urologist. I was then diagnosed with interstitial cystitis before the end of 2013 after all the tests were run... mainly the urine tests ruling out tuberculosis, cystoscopy (which showed some inflammation), and urodynamics test (which showed my bladder and uretha were uncoordinated). I was placed on amitriptyline. I then saw another urologist in 2015 and a hydrodistention with cystoscopy was done. It was found I do not have visible bladder wall damage with no glumerulations or hunners ulcers seen. I also had 900ml capacity. I was told I have a variant of IC and I don't have IC. Again treatment was amitriptyline. In 2016 I saw another urologist. A pelvic exam was done where it was determined I had hypertonic muscles, and a urodynamics test was done where I had complete retention after the water was placed in my bladder. Then there was a discussion about teaching me how to self catheterise myself considering retention was one of the symptoms I was having. This never happened. I was then told I have IC, I have a variant of IC, and I don't have IC in the same consult... in one sentence. At the end of last year I wound up at ER as I couldn't urinate, they had to empty my bladder and that's when i found out I also have external inflammation... that may be part of the burning I suppose. So right now I'm confused a little about who to see and where to go as not getting straight forward answers and treatment. I've seen 2 neurologists who specialise in movement disorders and along with assessing my other medical conditions (I have quite a few including some associated diseases to IC), they don't agree my bladder has any neurological problem (as suggested by the first urologist that I may have this in addition to IC). I also noticed that I react to food and drinks, so I have had to eliminate a lot from my diet. Also I get worse the more activity I do. I sit on ice packs a lot to help. I have used heat packs. I have tried aloe vera super strength capsules with no success. I'm already on baclofen for other things and so that is possibly helping my IC too. So that's my story... I haven't had a symptom free day yet. Some days are real bad, and other days are better. My doctor has resorted to random urinalysis tests on me to check I don't have a UTI (as I can still get those) as I really can't tell the difference anymore.
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lak78



Posts : 24
Join date : 2016-01-05
Location : Brisbane, Australia

PostSubject: Re: I'm new here    Wed Mar 29, 2017 11:58 am

Hi Mep

Wow, what a confusing time for you. It's frustrating when a "specialist" can't even tell you what you have. Just wondering, have you tried pelvic floor therapy? If your bladder isn't inflamed, its possible pelvic floor therapy might help.
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Mep



Posts : 4
Join date : 2017-03-28

PostSubject: Re: I'm new here    Thu Mar 30, 2017 9:21 pm

@Iak78 - Yes, I've been advised to get pelvic floor therapy for my hypertonic muscles. At the moment I'm getting physio though for 2 car accidents I had end of last year. So still haven't got to the pelvic floor therapy as yet. I also just found out I have a bulging disc in my lumbar spine. Apparently 2 of the cystoscopies done showed mild inflammation in my bladder. I'd say it's like I have PFD along with IC as from what read that is common. I also have IBS and PCOS along with other diseases.
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