I have thoughly baffled my uro.

[dhoffer]

Hi everyone,

I dotn know if anyone will have any suggestions for me but I thought I would ask any way.

I have been seeing my uro for years. He diagnosed me with IC several years ago. I have been learning to live with the pain and discomfort of this disease. But what has been the most difficult to live with is the leakage. My uro says he has done every test that he can think of to try and discover why I leak and he cant find anything. he sent me the the gyno. she says he has done all the tests that she would do.

For over 20 yrs I have been trying to live with the leakage. I have become so completely frustrated all I do is cry every time I leave the appointments. they both say they believe me about the leakage but they dont know why I leak.
where do I go from here? do I go to a different uro? different gyno? I see a therapist for some personal problems and he doesnt feel this is in my head.
any thougths anyone has will be appreciated.
thanks for letting me vent.
Dawn

[dg2901]

Has either one of the Dr's at least told you what type of leakage you're dealing with--stress (leaking during coughing/sneezing/lifting) or urge (leaking while trying to get to a restroom)? These are the two most seen types of incontinence in women.

Stress incontinence can (generally) be easily fixed with a simple surgery to place a sling underneath the urethra. Urge incontinence can be helped with bladder exercises (Kegels, PT, etc) and/or medication.

Hopefully you'll be able to find a Dr to help you. I dont quite understand why you're having such a tough time with what seems like a 'simple' diagnosis.

Wishing you well....
Diana

[dhoffer]

Hi Thanks for the post.

I have had two different sling surgeries. I take elmiron and enablex. I do leak some from laughing or hard coughing. but my biggest problems is that it can just flow out even when I am just standing there.

I do occassionally have a few days a month of dry right after my period. each month at around the 15th day of my cycle the leakage will get heavy. I will wear up to 3 or 4 poise pads at a time and change every 15-30 minutes depending on if I am standing. I can just be standing there not moving and will have a gush of fluid even after just going to the bathroom. I am in the bathroom alot but not usually to go, just to change wet pads.

uro says on examination that the surgeries worked and everything is fine. but I still leak.I have had several different tests done, a few of them more than once over the years. he is baffled. I am frustrated.

uro says it cant be urine because I happen to have a couple days now and then of very little leaking. gyno tried stopping my period for 2 months and then the leakage was constant. uro says its not my bladder since it is not constant. gyno says its not gynocological. so what now?? what else could it be then??
anybody have anything??
thanks Dawn

[leelee88]

Wow this is is differant, but you know PFD could be a culprit. Have you been to a PT and tried to strenghten those muscles down there. Whatever is leaking the PT could help stop it! I wish you the best!

[Briza]

Gosh, I'm sorry you are suffering from this. I don't have nor does it seem that many w/ IC have leakage, I know that some do but it does not seem to be a common IC symptom. I think Diana gave a good description of the different types of incontinence....I am so sorry you are suffering from this and not getting answers. What leelee posted about Pelvic Floor Dysfunction I think would be one thing to look into. Also, have you tried any over active bladder meds like Ditropan or Detrol? Just thinking out loud here.
Has your uro done a urodynamics test? I haven't had that test but maybe it could be of some help in discovering what the problem is....I may be completely wrong, so others I hope will chime in here. I know that ICN member Born2swim has had that test, for reasons other than incontinence, but after she had the test she posted in very great detail (she is a med student) what the test consisted of and what kind of results it can give. Just a thought...
I hope you get some answers and relief soon!
Best wishes!Bri

[Briza]

Below are two of the most informative threads and posts I have ever read regarding the urodynamics test...be forewarned, just like any procedure it is not all fun and games, but born2swim's posts are exceptionally educational regarding the procedure. Obviously the test does not give you a cure, but might be helpful in what is going on with your bladder and the leakage, just a thought. I may be completely off base here, but for some reason the urodynamics test came to mind in hopefully figuring out what is going on with your bladder and leakage...

http://www.ic-network.com/forum/showthread.php?t=41831
http://www.ic-network.com/forum/showthread.php?t=41992

[dhoffer]

Hi

I will look inot the pelvic floor disfunction. I was on ditropan xl for years before he switched me to the enablex. before that I took detrol. I can t say i remember for sure but I believe I have had almost every test to check my bladder. at least the uro says he has done every test. I have been looking at stuff for so long I think some of them are running together. this is what I have written down right now. I would have to dig through stuff to see some of the other tests I have had done.

video urodynamics:twice
cystoscopy in 2006 & 2008
intravenous pyelogram in 2008
voiding cystourethrogram in 2006 & 2008
2 different sling operations: 1 in 1994 and 1 in 2006

they tell me everything looks good and there is no reason for me to be leaking. well I will keep looking and am thinking about trying a urogynocologist to see if they can tell me anything. I'm sure my insurance company is thrilled with me. In the last 20 yrs I have spent a small fortune on pads, tampons, tests, meds and doctor visits to have them tell me it shouldnt be happening.

thank you to everyone that has posted. I will be looking into anything that anyone can give me.
Dawn

[SandraCT]

Hi Dawn

I too have leaking but it's not constant. I do notice it's better after my period as well. My new Uro called it post-void leakage. My former Uro said I had mixed incontinence (stress and overflow). I just had that VCUG test (Xrays with Catheter) in May and now this new doctor wants to do it again because she said the imaging center I will be going to does a more accurate test. She believes I have a urethral diverticula which could cause this. But.....if the test comes back normal, she is going to check me for Pelvic Floor Dysfunction and wants me to see a Physical Therapist for it. PFD can also cause leakage and other problems. I know there have recently been other woman on this site and they too were having large amounts of leakage where they would have to wear heavy pads all day. If you look back you may be able to find their posts and speak with them. I'm so sorry that you have been living with this for so long. I get so upset about the leaking myself. The strange thing is that I also have retention. Have you strained/pushed in the past when you urinate? I know I have and I'm wondering if I damaged the pelvic floor muscles. So I would definitely have your doctor look into this. I also read that certain surgeries (in my case the Urethral diverticula) may also cause stress incontinence afterwards. I know the slings are supposed to fix that problem and I see that you have had 2. I hope that you can get help and find relief for this because you have been dealing with it much too long. Best wishes,
Sandy

[ICNDonna]

It may be that you are having some spasms that are pushing the urine out. You might ask your doctor about taking an anti-spasmodic to see if that helps.

Donna

[lovely330]

I too have talked to several doctors about urine leakage, and they could never figure out what the problem was with me. I felt like one doctor did not even believe me. They all just kind of gave up on trying to fix the leaking problem and are now focusing more on the urgency for me. I havent found any medications that have helped unfortunately. I know how frustrating this can be. hang in there!!

[MINNIEB]

I Feel Your Pain But U R Not Alone. I Have Had Ic 4 About 10 Yrs. Whatever Your Dr Says, It Is Completely Normal. Dont Be Frustrated.