stellakitty Posted October 29, 2007 Report Share Posted October 29, 2007 Okay... I've read on here about how people ALWAYS gotta go... What about never having to go to the bathroom? I have dysaut., chiari, EDS, and cranial cervical instability and I NEVER pee. I've had people literally call me "the camal". I can go >12 hours without going pee. I've seen a urologist at the urging of my pain managment doctor and she told me the reason I'm always so constipated and "can't pee" is because it's a bad habit (ie I'm overly potty trained). I've tried the whole go to the bathroom every four hours and NOTHING comes out. I'm not dehydrated... I drink AT LEAST four 17 oz water bottles a day and WHEN I go it's CLEAR.Also I currently have a concussion (my w/c tipped over backwards on tuesday and whacked my head/neck good... was wearing a hard collar). But since tuesday I've been peeing even less... The other day I went 28 hours before I had to pee (my mom finally made to sit in the bathroom until I went). So I'm wondering if my head/neck has something to do with it... And it's been like that since tuesday. We're going to give it a couple of days but if I don't start going potty again my mom is going to call my neurosurgeon to see if I need a new MRI... My neck has been making noise even in the collar.Does anyone else have problems with not peeing? Do you know what it is? I realize my meds *could* cause it (I AM on opiates for pain control) but this is a longstanding problem... I was able to ride in the carr from Denver to Milwaukee without getting out to pee ONCE... And I wasn't on pain meds then.Alexa Quote Link to comment Share on other sites More sharing options...
pat57 Posted October 30, 2007 Report Share Posted October 30, 2007 the only thing I can suggest is you journal in take and out put. Would help the docs I think.good luck Quote Link to comment Share on other sites More sharing options...
doctorguest Posted October 30, 2007 Report Share Posted October 30, 2007 If you have seen a urologist, he/she would have done a bladder ultrasound. Do you have enough urine in the bladder and just not feeling the need to go? Or do you actually produce little urine to begin with? If you don't produce urine after drinking about 2 L per day, it would be a completely different problem, not involving the bladder.Keeping a journal of your fluid intake and urine output is a very good idea and would be very helpful to a doctor. Every time you urinate, you should measure how much and write it down. You should then calculate how much fluid you took compared to how much volume you have urinated per 24 hrs. This should give you an idea about your body's fluid balance. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted October 30, 2007 Report Share Posted October 30, 2007 hi alexa -i don't mean to sound blunt, but if the urologist you saw dismissed the concern without any testing then s/he was being pretty negligent. doctorguest's questions are very important though b/c if the urine isn't getting to the bladder then it's a very different problem, i.e. kidneys (&/or other things) whereas if the urine gets to the bladder but then "just" doesn't empty then it's a bladder issue. i've had some acute kidney issues (in the midst of sepsis) but in general can't speak much to chronic kidney problems. if it's a bladder issue though i can fill you in quite a bit. there has been some discussion on the forum at times as myself & a handful of others have issues with retention, some having to self-cath. one earlier link is: http://dinet.ipbhost.com/index.php?showtopic=5974. my urology issues are thought to be part of my progressive neuropathy/ autonomic failure; my specific urology diagnosis is "neurogenic bladder" though this can mean a lot of different things ranging from incontinance to retention to some combination of the too. in very non-technical terms it's a diagnosis that encompasses many neurological-based bladder dysfunction. for ME though it's 99.9% an issue of retention & inability to pass urine (go to the bathroom) on my own. for about two years now i've had to self-cath, i don't feel any normal urge to go to the bathroom but do get lower abdominal discomfort if my bladder gets especially full (though this is more full than it's generally healthy for it to be on a regular basis), etc. i am able to go some without self-cathing by manually pushing on my lower abdomen in a particular way but i can't fully empty. being able to empty fully is important to prevent frequent UTIs. and furthermore, b/c i don't have normal bladder sensation/ urgency, if/ when i do get UTIs (almost a given at least on occassion for anyone who self-caths) i don't get the more typical symptoms of a bladder infection.i was diagnosed primarily via something called urogenic testing, though i've also had ultrasounds & a cystoscopy, done several sets of input/ output diaries, etc. the urogenic testing isn't the most fun but it's far from the worst testing i've had....wouldn't even come close to my top ten.it is something i would follow-up on further though....not an emergency but something that should be figured out as it could create further problems (i.e. recurrent infections.)hope this helps.... melissa Quote Link to comment Share on other sites More sharing options...
stellakitty Posted October 30, 2007 Author Report Share Posted October 30, 2007 If you have seen a urologist, he/she would have done a bladder ultrasound. Do you have enough urine in the bladder and just not feeling the need to go? Or do you actually produce little urine to begin with? If you don't produce urine after drinking about 2 L per day, it would be a completely different problem, not involving the bladder.The urologist didn't want to deal with me... She walked in the room took a look at my chart and said that I was potty trained too well and that there was a very little chance that this could be caused by anything else (ie meds and my other problems). When I go I have to manually push on my bladder... I HAVE had an ultrasound of my bladder and kidneys a couple of years ago looking for disease and that was (-). I also do know that IT is filling up (they made me down alot of water for a US of my ovaries once). My intestines do the same thing (I go weeks w/o a BM). Quote Link to comment Share on other sites More sharing options...
maryfw Posted October 30, 2007 Report Share Posted October 30, 2007 I noticed you said pain management doctor. Some pain medicines can affect your ability to go to the bathroom. mary Quote Link to comment Share on other sites More sharing options...
Roselover Posted October 30, 2007 Report Share Posted October 30, 2007 Very good advice Melissa - thank you.I'm having some of this problem myself lately... and I have wanted to just ignore it. But you reminded me of the reasons not to let it go on.I do have sensation to go... it's just not until I'm extremely full and then I can't release it all. I had a urology study done a year and a half ago and I totally agree - not the best test - but not even near the top of the worst!!! :-)Thanks Melissa!~Melanie Quote Link to comment Share on other sites More sharing options...
stellakitty Posted October 30, 2007 Author Report Share Posted October 30, 2007 I noticed you said pain management doctor. Some pain medicines can affect your ability to go to the bathroom. maryI just started going to Pain management within the past year and this has been an issue for quite some time... For my craniotomy for chiari we drove from Denver to Milwaukee (I was on NO pain meds on the way there) and I didn't go pee once! Kinda odd... I was even this way when I was in grade school... According to mom when I was in kindergarten I rode the Pike's Peak Cog all the way to the top, took the tour, rode it back down, and drove home... Didn't go pee, once. I was five! But now my doctors are really concerned that my bladder is going to rupture and I won't know (I have loss of feeling below my neck from the instability/compression). And the PM doc mentioned something about urine backing up into your kidneys? IDK... it's really pathetic when your mom has to remind you to go to the bathroom because you don't have th URGE to go... PT mentioned a stimulator one day... Anyone on here have one of those? Quote Link to comment Share on other sites More sharing options...
doctorguest Posted October 30, 2007 Report Share Posted October 30, 2007 What you need is a thorough urologic evaluation, including the urodynamic study. Medications, including those that have anticholinergic properties, can cause urinary retention, but overall, a qualified urologist needs to evaluate your case in order to properly diagnose and treat, if necessary. Often, urologists are used to deal with male urologic problems, and thus, some unfortunately can either be dismissive or ignorant about women's issues. Specialists, such as urogynecologists, are trained specifically to deal with women's urologic problems, so they would be able to help you more than a urologist. Quote Link to comment Share on other sites More sharing options...
pat57 Posted October 30, 2007 Report Share Posted October 30, 2007 Has anyone ruled out Autonomic dysreflexia,"with you?I know nothing really, however autonomic dysfunction - having pain , and not feeling the pain are key points. esp pain of bladder distention- BTW. Quote Link to comment Share on other sites More sharing options...
stellakitty Posted October 30, 2007 Author Report Share Posted October 30, 2007 Has anyone ruled out Autonomic dysreflexia,"with you?I know nothing really, however autonomic dysfunction - having pain , and not feeling the pain are key points. esp pain of bladder distention- BTW.That's interesting that you mention Autonomic Dysreflexia, Pat, because that's what pain management calls it and my cardio doesn't know WHAT to call me other than I have something wrong with my ANS. Last night I had an AWFUL headache that woke me up and I took my bp and this is what it did over several hours:162/119 pulse:163161/94 pulse:111195/85 pulse:8582/59 pulse:160102/63 pulse:164127/97 pulse:150It's like Dr. Jekyll and Mr. Hyde (BTW this is my lying down *trying* to go to sleep between 10:45 pm and 2:00 am). Not to mention I felt like death. I know that there have been several occasions where I wasn't wearing my hard collar and fainted and ended up popping something out in my neck because I couldn't move until my mom "straightened me out" (I know that sounds odd and far fetched). Quote Link to comment Share on other sites More sharing options...
pat57 Posted October 30, 2007 Report Share Posted October 30, 2007 Well, you should try a catheter and see if you are much improved. It could be "just a test". Quote Link to comment Share on other sites More sharing options...
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