Urogynecologist appointment

[espink]

Hi everyone,
I have been posting here for a month or so. I first was told by my Urologist that it looks like I have IC based on my symptoms and a scope in his office. I was not happy with the visit due to his lack of answering my questions and I felt that I was so rushed like being on an assembly line. He put me on Vesicare and after I told him it was working he said I probably didn' have IC since vesicare does not work for people with IC. He told me that my bladder was inflammed and to take advil for 2 weeks and see him in 3 months.
I thought the vesicare was working because it helped my frequency so much but in the end I was having problems urinating with alot of hesitation so I went off it.
Anyways, yesterday I went to see a top Urogynecologist out of Boston. After meeting me and looking over my questionaire I had filled out he and another woman Dr. did a number of tests on me. First was a pelvic exam which didnt hurt with my vestibulitis. SHe was ver gentle! Then they did a test in which they kept putting water in my bladder and asked me about urge with questions on when I would go to the bathroom. After putting 500cc of water in my bladder I told them this is when I would pull over on the side of the road to go to the bathroom. That was one of the questions. Then I had to urinate in a special toilet that measured my flow and output which was computer generated and printed out my results. After looking at my results the Dr. told me there was no way I had IC. He said I would be screaming at 150 cc. Then I had a cystoscopy and got to see my bladder on the screen. My bladder looked great.
Well the Dr. told me I had a neurogenic bladder and what is happing is the nerves to the bladder are damaged. My bladder is filling up and my brain is not knowing when I should urinate. I also have a problem with voiding which the flow is so erratic that I have to push to go and stand up and squat and run the water and anything else I can do to go. It is a good thing I stopped the vesicare because I was retaining more and like the Dr. said people with IC vesicare wooks for some so the other Dr. was wrong
I am now confused and worried but I can't find alot of info on neurogenic bladder. I have to go for Urodynamic testing in mid December and start PT for voiding dysfunction, stimulation I guess. I meet with the Dr. again after my testing but not until mid Jan. In the meantime I am still having pain, thank God I have pain meds. I bought a heating pad today and wish I could get into PT sooner but this woman I will go to is the best around here and I will wait for the best.
He also referred me to a Gynecologist in Boston for my vestibulitis and severe ovulation pain. I also cannot drink alot of fluids which I am used to doing due to my bladder filling up so much and my voiding dysfunction.
I was wondering if anyone had any infor on this neurogenic bladder condition ie any websites. I guess I won't be coming here for support. I am very happy that I do not have IC but also nervous about the other thing. After all my testing we wil see if surgery is right for me which consists of putting a stim thing under my skin in the lower back to get thing right again. Thanks for all your support over the last couple of months and any info would be greatly desired.
Elaine

[Cherie708]

Can u tell me what symptoms u do have? My urologist also suggested neurogenic bladder but I am not done with tests yet?

thanks

cherie

[jameson77]

hang in there girl....

i have some of the same symptoms you do, but i do have IC. it takes me FOREVER to start going to the bathroom, and i go several times a day that it is almost embarassing. my doc put me on Ditropan for frequency but i cannot tell it's working much. i also have several ovulatory pain, cysts, painful periods, etc. and am going for a long-awaited Endometriosis consult on Thursday to have a laparoscopy done. i just wanted to say that i know it is confusing when there are several things going on and that i always come here for support and know that you can too! i also know it is frustrating, this whole diagnosis process and we just want answers.....

i just wanted to send some hugs your way and say that you are not alone!

:bunny::bunny::bunny:

[junebug800]

jameson77 I also have some of the same symptons you're talking about. The hesitancy is something I think I also had before but it had been so long since I was symptomatic I couldn't tell if it was worse or better than before. It feels odd to feel the need to go all the time and then being sort of disappointed by the outcome so to speak. My urges have been less strong but it's like that feeling of "if there is a bathroom here I think i'll probably go" just to get rid of that feeling even though it comes right back. The wierd thing is that Ditropan seemed to work well before but this time it seemed to make the hesitancy worse. I don't know if if made me retain or if I am currently retaining. I had a voiding test done before that said I was normal. Who knows I may need to have another.

espink, I have heard of someone with the problem you have. She didn't ever feel like she had to go but when she finally did it was a ton of urine at once. I thought I remembered that she had surgery to correct the problem. I have the opposite problem where I feel the need pretty much all the time and have a low bladder level tolerance. No sooner do they start to fill me up that my toes curl up. I am also going to be seeing a urogynecologist who is affiliated with a university. I'm looking forward to see what ideas he might have. I hope you get some relief soon.

[espink]

I want to thank you Jameson for your support I appreciate it. Also thanks you to Mothergoose and Cheri.
Well there are two types of nuerogenic bladder, overactive and under active or hypotonic. I have the underactive. So basically my bladder is filling but the nerves are damaged and there is no signal to the brain or spinal cord for me to go. I have been very worried about this diagnosis but I feel better after talking with the PT and my primary Dr. The nerves are damaged most likely from a colon resection surgery I had 2 1/2 years ago. I guess scar tissue has done this which really frustrates me. I will be having urodynamic testing done on Dec 11th and then I see the Urogynecologist to see if I am a canidate for interstim surgery. I hope so because I do not want to have to catherize every 3 hours. The other thing my Dr. did is he is sending me to PT for pelvic floor therapy. I also have a problem with urine flow. I have a really hard time starting to go and then I stop and go and have to push and I have problems emptying my bladder. My bladder still feels like it has not emptyed which I guess is due to this neurogenice bladder. I was diagnosed less than a week ago so I am still learning. I talked with the PT today because I cannot get an appoitment for a month. She told me to lean forward or to the left and don't push because that is damaging the muscles more. Easier said than done. I will write more again, I am in so much pain today and all last night so I din't get much sleep. Take care everyone and I'll write again soon.
Elaine