corina Posted September 18, 2006 Report Share Posted September 18, 2006 okay, although i feel VERY embarrased by this, i do want to know if this happens to others as well. it has been 3 times now that i have been wetting myself now and i rally HATE it. it started when i felt that i had a very strong urge to go to the bathroom but while trying to get there (which takes some time as i often walk like drunk), i noticed that before i even made it out of the livingroom the urge stopped and i didn't feel like going anymore. so at times i got back to my chair until i urgently had to go again. it's not just that i feel i need to go, it is immediately a very strong feeling. but then, at times i do not feel like having to go and i suddenly noticed that i was all wet (and not just a few drips ladies, gggrrrr). i feel so very embarrassed about this and it makes me doubt to go out, because you never know when i get wet again .when i called my pcp today he wanted to send me to a urologist, but i so hate to go to hospital again and do all those test (although i have to admit that i don't exactly know what kind of tests, it's just that i hate to be in hospitals doing more tests, you know) so i asked him if he would be okay when i first would ask my neuro about it and my gem doc was okay with that. i hope to be able to see my neuro in a few weeks but i would like to know if any of you guys have similar problems.corinathewetone Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted September 18, 2006 Report Share Posted September 18, 2006 I questioned my PCP (yes, corina... dear Dr Cobble!) about that. He said he could send me into the urologist and I could have all the tests.... but, at the end of the day... it is another thing that comes with NCS.... Um... watch out - fecal incontinence does too! (Can I say... THAT'S even more embarrasing?) I just wear a pad and go about my business.... Dr did do a urinalysis and a culture but nothing grew out. Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted September 18, 2006 Report Share Posted September 18, 2006 My husband suffered from this - it was the worst symptom for him. As you stated, sometimes he wouldn't even know that he was wet. He was referred to a urologist by the cardiologist that administered the Tilt Table Test. His exam at the urologist was not that invasive - he had some blood and urine testing but the diagnosis was done in the exam room and I believe mostly based on his NCS diagnosis and also the answers to a urology screening questionaire that was quite detailed. None of his answers were routine for the normal problems of leaking, stopping, starting, retention, etc. When it would happen to him it is as if his entire body flushed whatever was in the system (bladder and bowel). It has been over a year with no accidents using the Detrol LA. The only side-effect he has is dry mouth. He does occasionally still have urges but he also has time to get somewhere - the urologist's goal was to buy him 15 minutes of time. When I was around when it happened, I noticed that he was in a "drunken state" so we are fairly certain that it is related to his NCS. If you do a search on "bladder" you will see my previous posts. I hope this helps or at least gives you a starting point for treatment. Quote Link to comment Share on other sites More sharing options...
DancingLight Posted September 19, 2006 Report Share Posted September 19, 2006 Corina,I am so sorry this is happening to you.I do not wet myself, but do have urgency and frequency. I have seen the urologist several times. He did not do any invasive testing (although there is testing available and you can do a search for urodynamic study and cytoscopy (sp?)). The cytoscopy isn't too too bad from what others have told me. I have tried medicines for overactive bladder also, as Buddy's wife mentioned. For me, it has been a process of trial and error. I did not have success with Detrol, Detrol LA, Ditropan or Oxytrol.I am now having decent success with Sanctura which is a fairly new one. There are many choices available in the U.S. They are big money makers I think. Are they available to you also? Others are Vesicare, Enablex, etc.The only problem I have is more constipation, more dry mouth and unfortunately fluid retention. I would like to be able to take the Sanctura 2x a day but I hold too much fluid. So, I am now taking it once a day to get through the nights wihout waking up so much.I was awake 5-6 hours/night with bladder spasms before the Sanctura. So it has been a big help to me. I have to go so often that I just never could get any rest and was going every 15 minutes. It bladder issues seemed to also aggravate my ANS overall. So, the Sanctura is 'good enough' for now.I also take DDAVP.People with Overactive bladder do complain of leaking, wetting accidents, etc. so maybe a drug like this could help you, even though it isn't necessarily the root problem, but perhaps it would treat the symptoms?Maybe you could do an empirical trial of a med like this with your doctor's blessing if he does not think you need to rule out other medical causes/conditions?Sorry to be away so much and not posting...I've been in a potshole/lymehole! But, I am hanging in there, just not much computer time. Emily Quote Link to comment Share on other sites More sharing options...
calypso Posted September 19, 2006 Report Share Posted September 19, 2006 Corina,This is awful. I am so sorry you have to deal with this in addition to all of the other stuff.Do you suffer from muscle weakness? I'm wondering if this could be a weakness of the muscles that support the bladder. Could you try Kegel exercises or whatever else a doctor prescribes? These would be non-invasive and maybe they would actually help things a bit. The muscles seem to play a large role in helping you to "hold" it.Good luck,Amy Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted September 19, 2006 Report Share Posted September 19, 2006 I forgot to include that my husband's diagnosis for the bladder problem is "neurogenic bladder". Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted September 19, 2006 Report Share Posted September 19, 2006 Sorry to hear what you are going through. I hope you figure out what's going on but in the mean time don't stop going out. Just get some underware that absorb to wear when you leave. I'm sure they will just be temporary till you figure this all out.Hang in there I know how discouraging it is when new sx pop up.Dayna Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted September 19, 2006 Report Share Posted September 19, 2006 i know the mechanisms of NCS. i have been reading about syncope, NCS and all of that stuff for 2 years but i never ran across the wetting and deficating being symptoms of it. did the doctors explain the mechanism of why it would cause us to do that? when i wet myself they just tested me for seizures again but the EEG showed up okay. thank you.dionna Quote Link to comment Share on other sites More sharing options...
corina Posted September 19, 2006 Author Report Share Posted September 19, 2006 dionna, no one explained me (at least no doctor) but i've read somewhere that the dysautonomia can cause this. i wil ask my neuro about it when i see him.dayna, you're right i need to go out when i can, i can't let this rule my life (and i don't want to!!!).amy, i didn't think of muscle weakness, that could be a reason. i have been doing the exercises you mentioned during both my pregnancies and it worked well. i will try again, thanks for mentioning!emily, i am sorry that you're having a bad time (do i have to say: again, or shall i stick to: still?!!!). thank you for mentioning all the meds! i will write them down and ask my doc if needed!buddyleeswife, i am really glad to hear your husband is "dry" for over a year now! that is very encouraging, thanks a lot for helping me with this.gayla, my sweetheart doc (hope he doesn't read this ) knows how much i hate to be a patient and go to another specialist and get tested again. so i am very glad he understands i want to se my neuro first! oh and btw, i'm having fecal problems as well as i notice that something's leaving my body over there while i didn't even notice it was going to (i'm trying to write this as descent as possible, hope i succeed!)thank you all for helping me, i really appreciate it!corina Quote Link to comment Share on other sites More sharing options...
persephone Posted September 19, 2006 Report Share Posted September 19, 2006 Weak bladders can be linked to Ehlers Danlos because of the stretchiness and fragility of connective tissue....do you ave EDS, Corina? I can't remember. I'm so sorry to hear about this- hope you get some answers and some treatment soon. Have you tried anything like Duloxetine for it? Quote Link to comment Share on other sites More sharing options...
corina Posted September 21, 2006 Author Report Share Posted September 21, 2006 persephone,i didn't think of EDS being a possibility, thank you for mentioning. i am not diagnosed with that but there does run a form in our family. i will check it out!i'm not on any meds yet (at least not for this problem!!! ) i will wait with that until i found out what is wrong exactly,thanks for giving me another insight,corina Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 21, 2006 Report Share Posted September 21, 2006 bladder dysfunction isn't uncommon for POTSies. Unfortunately, some of the urinary functions fall under autonomic control. And, others here are correct that EDS can also go along with bladder issues.Nina Quote Link to comment Share on other sites More sharing options...
corina Posted September 22, 2006 Author Report Share Posted September 22, 2006 thanks nina!i'm waiting for the hospital to make me an appointment with my neuro. i will talk to him and decide what will be the next step to take. in the mean time, the pharmacist brought me some supplies which help in case i can't make it to the bathroom in time (thank you gayla for suggesting ), or in case i'm loosing it without noticing.corina Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted September 22, 2006 Report Share Posted September 22, 2006 i was looking up autonomic neuropathy and some of the signs and symptoms include trouble with urination, including diminished sensation, overflow incontinence and inability to empty your bladder completely, which can lead to urinary tract infections. of course there are also a lot of other signs and symptoms and i got this information from:http://www.mayoclinic.com/health/autonomic...0544/DSECTION=2i hope you are doing better now or that you atleast have it in the works to getting better.dionna Quote Link to comment Share on other sites More sharing options...
DancingLight Posted September 25, 2006 Report Share Posted September 25, 2006 hi corina!i'm glad you have some 'supplies' now! and perhaps you will find a medication that will eliminate your need for them.you made me smile...i would say 'still' would be a good answer! rather than 'again'! grrrrrrr!!!!love, em Quote Link to comment Share on other sites More sharing options...
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