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I am leaking urine AGAIN!! I am leaking urine AGAIN!!

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  #1  
Unread 08-19-2008, 08:14 PM
Unhappy - I am leaking urine AGAIN!! I am leaking urine AGAIN!!

It started a couple of days after I had my stents taken out. I noticed my panties my damp, well just thought it might be discharge. Then a couple of days later I started feeling irritated in my vaginal area. It reminded me of the irritation when I was leaking before from the VVF. I thought I was being paranoid. I have never had a yeast infection in my life so I thought maybe that was it. I did some research on that and it says burning and itching. I am not having either. I take a shower in the morning and by evening I can't wait to get in the tub to soak because it hurts. When it first started and it was mild I thought it was “The not so fresh feeling” I hear on commercials. Well last night I noticed a small odor. So again I was thinking infection. By the next day I could tell it was defiantly URINE. I have some of the pills left that cause your urine to turn orange so I finally do the pyridian test last night. I have been trying so hard to keep from admitting it was a possibility but there were too many signs. I took the med and about an hour later I took a shower and I was leaking orange in the shower. So then I knew it was urine for sure. So then I did the tampon test and left it in for about 3-4 hours and before I went to the restroom I pulled it out and the whole bottom of the tampon was orange. So I am leaking out of my urethra this time!!!!!

So this morning I did yet another tampon test, kind of like a pregnancy test, you do it more than once just to make sure. Well same thing today. So I finally broke down and called my doctor. His assistant called me back and said with my case being so unusual that she wanted to talk to the doctor right away and she would call me right back. Which to me is kind of worrying because this doctor has been doing these types of surgeries for over 29 years and he teaches other doctor's from all over the world how to preform the surgery. Well he told her to get me back up there, to his office to do a cystoc., CT and one other test I can not remember the name of ASAP. So I am awaiting that call.

I did ask the assistant what the possibilities of what it could be and I told her I know that she could not tell me anything for certain I just needed a worse case senerio so I could prepare myself. She said worse case it was ANOTHER fistula in a different location. Or it could be that my spynxet, (I have no idea what she really called it just kind of sounded like that) may not be healing properly.

I told her I did not want another surgery, I struggled way to hard having these last two back to back. She said let's just wait and see and hopefully it is something that cortisone treatment could take care. Ok no idea what she meant by that either.

I am in such panic mode right now. I keep telling myself that at least it is not my vagina this time I am leaking from. I am trying so hard not to cry but the thought of going through more pain is almost too much to bare. The thought of the cystoc. to me makes me cry because for some reason they are so very painful to me.

I am the type of person that I have to know all I can, good and bad so I can prepare myself. I had some time with the fistula but not this time. So please if anyone knows about anything about what “could” be going on or more on the two things the assistant mentioned please let me know.

Thank you so very much. I can't believe I have to go through more. I thought it was over.
Sassy
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  #2  
Unread 08-19-2008, 09:15 PM
I am leaking urine AGAIN!!

Oh Sassy,

I am so sorry you are going thru these troubles. (((HUGS)))

Hang in there and keep us posted.

Mac
  #3  
Unread 08-19-2008, 09:22 PM
I am leaking urine AGAIN!!

Sassy,

I don't have any answers as to what could be going on with you. However, I did want to lend some cyber sister support and send some positive thoughts your way. I can only imagine how frustrated and fearful you must be not knowing exactly what is wrong. Try to take some deep breaths and not think the worst. I know it is a natural female reaction and easier said than done. Also, negative thinking can make whatever small thing we have going on in our bodies worse. Do you have a favorite activity or anything you can do to distract yourself until you hear from the doctor? Keep us updated.
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  #4  
Unread 08-19-2008, 09:52 PM
I am leaking urine AGAIN!!

Thank you so much ladies for the support. I honestly am not a negative thinker. I thought positively that for the past two weeks that it was not urine knowing in the back of my mind it was a possibility. I just have to be prepared and understand the possibilities so when I am sitting in that doctor's office and he says, ok this is what you have, then I will not be completely in the dark.

I know so many women here have been through so much, and my heart goes out to each and everyone one of them. I am not trying to sound like I have been through more than other's have but if you have read any of my past post you would see that I have been through the ringer and then some.

Thanks again for the comforting words and support
Sassy
  #5  
Unread 08-20-2008, 06:32 AM
I am leaking urine AGAIN!!

Sassy--

Many, many extra S to you....

Do you see the doctor today? Please let us know as soon as you can what is going on.

You will be in my prayers...
  #6  
Unread 08-20-2008, 12:13 PM
I am leaking urine AGAIN!!

No Deb I have not gone yet, I wish. My doctor is at Mayo and they are so busy sometimes it can take a week or more to get in. I honestly was hoping with the doctor saying get her in ASAP that they would just call and say be here tomorrow.
As long as nothing gets worse that is ok for now because I will have more time to try and find out what I might be hit with when I do see him.

Thanks
Sassy
  #7  
Unread 08-20-2008, 04:26 PM
I am leaking urine AGAIN!!

Sassy,

My best wishes and prayers go out to you. I hope this all gets resolved for you soon.

Take care - Joanne
  #8  
Unread 08-21-2008, 06:16 PM
I am leaking urine AGAIN!!

Well I finally got my appointment. It is September 18 and 19th. I know that sounds like really far off but the nurse said they generally schedule 16 weeks out so I guess I feel lucky they could get me in that soon.

Right now the leaking which is really dribbling is manageable. Now if I had not gone through the fistula instance where I was gushing ALL the time then I probably would not be so calm about it. I just put on a panty liner cover it in Summer's Eve powder and it last me most of the day before the pad is soaked. A whole lot better than completely filling a depend every hour.

They said I will be going through two days of testing. The test they are going to do I guess I will have to do some research on what they entail. Any personal experience anyone's has I would love to hear. Here is the list of test:

voiding cystogram (no idea what this is)
cystoscopy ( I know what these are and for some reason they are so very painful for me)
urodynamic (I have read bout this but any personal experience would be appreciated)

If anyone has experienced these symptoms I would love to hear your experience and outcome.

Thanks again for all the support. I know I am pretty calm, maybe mad about it right now but the closer I get to the appointment the more nervous I will get.

Sassy
  #9  
Unread 08-21-2008, 09:18 PM
I am leaking urine AGAIN!!

Sassy,

It is encouraging to hear you have an appointment set and they at least have a plan set in place to figure out what is going on. I have had a cystoscopy and urodynamics. You already know the drill on the cystoscopy. The urodynamics is not painful. First, I was asked to urinate in what appeared to be a portable medical commode with a large medical measuring cup on top of a scale. Then the nurse did a sonogram of my bladder. After that she inserted one catheter in through my urethra into my bladder and another catheter went into my vagina. None of this is painful, unless you are sensitive to catheters going into your bladder. After that she proceeded to fill my bladder with saline water to absolute capacity, and by absolute capacity I mean absolute capacity, your eyeballs are floating capacity. The saline in the bladder does have a slight sting to it but it is not uncomfortable or unbearable. She sees how much your bladder can absolutely hold before asking you to perform a series of tasks like laughing, bearing down, coughing, standing, etc.. The catheter inside you is hooked up to a machine and it calculates all the data from these tasks and what your voiding pattern is, how fast your urine flow is, etc.. The best part is when you get to pee after performing all the circus stunts. It was seriously the best pee of my entire life. That is pretty much it in a nutshell.

You'll do fine with the urodynamics. We'll be here as your appt. draws near to keep you centered and surrounded with good vibes. Take it easy until your appt.. ;-)
  #10  
Unread 08-21-2008, 09:27 PM
I am leaking urine AGAIN!!

Sassy--

Since 2 of my daughters had vesicoureteral reflux and needed voiding cystourethrograms, I do know a little about them. They will fill your bladder with a liquid that contains a contrast that can show up on an x-ray. Then, you will urinate while they record it on an active x-ray. It will show if there are any abnormalities in either your bladder, ureters, or possibly urethra. This site describes it better than I can.

The test wasn't any more painful than just getting a catheter inserted but my little girls found it extremely difficult to be told to 'go' when not on the potty when they were very young. I do hope that helps a bit.

S....
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