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Uro. Gave Me A Catheter


smiles
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Have had 3 bladder infections in the last 14 months. No typical infection symptoms. For me, convulsions and almost passing out spells (slurred speech, can't walk straight, weak to the point I can't feed myself after convulsions) is how I know I have an infection. I got my last bladder infection 3 weeks ago. As a fluke, 2 weeks ago an ER doc cathed me and got 1050 ccs of urine out of my bladder and said that obviously my recent convulsions were due to bladder retention and probably automonic (due to my dysautonomia). He said 1050 ccs was like being 4 1/2 months pregnant. 2 days later after convulsions began again, the uro. office pulled 750 ccs out of my bladder shortly after I used the bathroom. New theory now is that my convulsions are from urinary retention and not infections. My cardiologist's nurse says that it is probably not just autonomic--there must be something else going on. I will have the catheter till my cystoscope on June 5. Anyone else have this problem and is it related to dysautonomia? I never had a bladder infection in my life till I got sick 1 1/2 years ago. I've never been the same since.

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hi smiles -

i'd had a bit of lower abdominal discomfort & with time was entirely unable to go to the bathroom on my own. while in the hospital for other reasons i was cathed and had over 2000ccs in my bladder. by that point it was very painful & i was said to have "broken the record" for how much my bladder had held. so yep....i can empathize. i then had a foley cath in for about a month (including two trials of taking it out to no avail) until having further testing (cystocopy & urodynamic studies). i even cut holes in old pairs of compression hose so that i could wear them with the foley in.

regarding infections, every time the body retains urine more than it should the chance of an infection goes up. for me the thought was that i'd had the problem for some time thus gradually stretching out my bladder more & more. i actually didn't have any (known) infections prior to figuring out the problem but have had a few since (the likelihood goes up greatly with cathing...i've actually had far fewer than many). b/c i had a simultaneous ear infection & my sensation "down there" is impaired one was a kidney infection before i knew anything was wrong....and BOY did i then know.

after all my testing and little improvement (i could go a little on my own with manual pushing/pressure) i was taught to self-cath. a HUGE improvement over the indwelling/foley cath i must say. i never would have thought i could be excited about self-cathing but after having to wear the bag around with tubes coming out of me for over a month i was thrilled. i've been self-cathing now for about a year now.

is it "just" autonomic? it could be. but that doesn't mean that other things don't need to be ruled out. i have recently received some "other than autonomic" diagnoses (mitochondrial disorder) but nothing that would otherwise explain the neurogenic bladder/ retention. a few others on the forum have to self-cath as well....either regularly or at times. autonomic nerves are involved in bladder function and for me i have nerve damage pretty much throughout my body.

urodynamic testing - which usually is done after the cystoscopy - shows better where the problem is (bladder muscles, nerves, sphincter, combo, etc). it doesn't give all of the answers but it gives a better idea. if this test hasn't been mentioned you may want to ask about it.

feel free to let me know if you have any other questions.

hang in there,

:D melissa

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Guest tearose

No way for me to "accurately" know for sure...but I think my dysautonomia contributed to my pelvic colapse. The Mayo dr said "it is possible". I was trying to garden and I pushed my physical body too much over a few days...I wound up with pelvic colapse and needed surgery to repair me!

The good news...a good uryogynecologist and their special testing and a good radiologist doing a top notch CT scan...helped me get the dx.

Our injuries/ problems are different. Some will need to use a catheter some may be repaired by surgery.

I hope you can manage well and will be feeling well soon.

best regards, tearose

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After giving birth by c-section my bladder retained urine for months. I would get repeated bladder infections--and for me too, when the infection took hold, I would get slurred speech, weakness, and other symptoms too--not fever or pain however, which would be a normal sign of a UTI. But these symptoms can also be part of severe POTS, and infections can make POTS symptoms worse. It took 3 months for me/a doctor to realize why I kept getting infections. I finally saw a urologist who prescribed a long-term antibiotic. He believed the problem was a result of the abdominal surgery and inactivity due to POTS. I also wonder if POTS/autonomic dysfunction itself played a role. After 3 months they catheterized me to see if I was retaining urine and I wasn't so I was able to go off the medication. I have not had this problem since then.

It sounds like you are really having a difficult time. I hope you get answers and resolution soon.

Katherine

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Thanks everyone for the info! It is nice to hear that I'm not the only one on earth with a catheter or this problem. Sometimes I feel so all alone. I am gradually getting better. In fact this is the fastest I've ever recovered from an episode this serious or this long. I am walking thru the house now, can feed and bathe myself now with out complete and utter exhaustion. I think keeping my bladder empty with this catheter has really helped! Crazy as that sounds.

Went to my cardiologist yesterday. I love her-she is so good. She did say though, that more than likely there is another diagnosis that will link all my other symptoms and diagnosis's together now that this bladder retention has come up. She says I need to see a autonomic neurologist to find out what is going on. She does only dysautonomia and mitral valve prolapse at her office. I am, by far, off the charts for her usual patient. I appreciate her honesty with me. She said I don't neatly fit into any box of diagnosis and thus the referral to yet another specialist.

sunfish, I'd like to talk to you more since you seem to have the closest symptoms to mine. I am new at this Forum thing. How do I do that? Just thru this forum issue like this?

Just glad to be feeling a little better than I was and not so all alone, Teresa

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I also had bladder infection when I was first illand had POTS symptoms, although I wasn't diagnosed with until a year and a half later. I was "accused" of not emptying my bladder last year after shoulder surgery when they had to give me a bedpan every 10 minutes because I couldn't get up after the anaesthesia. I believe I just don't retain any fluids in general no matter how much or which way they are administered. Martha

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Smiles,

Wow, it sounds like you are going through a lot right now.

I just wanted to chime in and let you know that if you want to personally write a message to someone just click on there name (such as "Smiles") and then on the right hand side under "communicate" just click on send a message.

Hope you see improvement soon!

Lisa

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