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Any experience with hematura?
Posted: 15 July 2013 10:01 PM   [ Ignore ]  
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Hi there,

I watched the urine video. It was interesting! While I don’t have cloudy urine, I do have unexplained hematura in multiple urine tests. I have a history of kidney stones (10 years ago) but have no current stones or infection. I recently had an unremarkable ultrasound of my kidneys and bladder. I have experience a sudden urgency to urinate throughout the day. My urologist suggested my bladder may not be emptying completely due to muscle weakness. Ring any bells?

Thanks SO much!

Robynne
“Undiagnosed in San Francisco” smile

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Warmly,
Robynne
aka: “Undiagnosed in San Francisco”

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Posted: 15 July 2013 11:32 PM   [ Ignore ]   [ # 1 ]  
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Hi Robynne! Great intro! Let’s talk about pee! Ha. Many of us can develop interstitial cystitis. I have no idea if that is what you may be dealing with (all disclaimers in place and it is VERY hard to tell over the internet!) but I’m curious if your urgency may come with some pain? Does it feel like you’re “about to get” a bladder infection? I had some blood in my urine a couple of times, but I DID develop a stone at one point. Was that related? We’ll never know. Many EDS folks tend to bleed easily (and clot easily—bad combo), so we just don’t know. I’ll be curious if anyone else her is having voiding issues. Welcome aboard, and we all look forward to getting to know you better! wink

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 19 July 2013 02:05 PM   [ Ignore ]   [ # 2 ]  
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hi i have kidney stones all the time. i pee before i go to bed but then go lie down and it hurts and feels like i have to pee again. so i get up and go to the bathroom and sometimes i pee alot like i just didn’t pee and sometimes nothing comes out. this could happen a couple a times in a 1/2 hour. i finally told my md and he gave me baclofen works wonders. not that i still don’t have problems but its better. some nights i’m up 3-4 times and sometimes not up at all. sometimes it feels like the muscles down there are ripping out of the sides very painful. get up from the toilet no pain??? sometimes after eating i have to pee so bad it hurts. our bodies are just amazing.

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Posted: 15 December 2013 08:33 PM   [ Ignore ]   [ # 3 ]  
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dab78 - 19 July 2013 02:05 PM

hi i have kidney stones all the time. i pee before i go to bed but then go lie down and it hurts and feels like i have to pee again. so i get up and go to the bathroom and sometimes i pee alot like i just didn’t pee and sometimes nothing comes out. this could happen a couple a times in a 1/2 hour. i finally told my md and he gave me baclofen works wonders. not that i still don’t have problems but its better. some nights i’m up 3-4 times and sometimes not up at all. sometimes it feels like the muscles down there are ripping out of the sides very painful. get up from the toilet no pain??? sometimes after eating i have to pee so bad it hurts. our bodies are just amazing.

Dab, Have you been evaluated for pelvic floor dysfunction? Yes, our bodies are amazing, right? We can get all sorts of pelvic pain syndromes (everything from pelvic congestion syndrome to vulvodynia to interstitial cystitis to voiding problems to frequent UTI’s to chronic candida vaginal infections… need I go on?). Oh, we musn’t forget the occasional incontinence! Yikes. I recommend that most of us keep measuring strips to verify if the pain is a UTI vs. a possible yeast infection. It’s hard to imagine, but sometimes when ‘everything hurts’, differentiating the two can be hard. I’d HIGHLY recommend seeing a good urologist or nephrologist about those kidney stones, my friend! That is one thing they LOVE to help prevent, EDS or no EDS! wink 

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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