Off to a new Uro

[Mothergoose]

I have had my IC or most of my IC bladder symptoms under pretty good control for me.

Although my urinary retention has gotten way worse. Every 3 days or so I can't pee for about 24 hours, then every other week or so I go into total retention and have to go to the ER.

So I am off to a new Uro this week. I am not too sure to expect.

I am not too sure what he will want to try or tests he will want to do.

My retention is from the bladder not contracting to squeeze the bladder to push the urine out.

My bladder is streached out so much that it now will hold over 60 onuce of urine, I don't have any sensation of my bladder having urine in it till I have over 20+ onuces in it.

I guess it is reasonable for him to want to do some testing as the last testing I had for the retention was about 3 years ago.

Wish me luck MG

[lizzie_71]

bladder retention

Mothergoose:
1800 ml of urine is way abnormal. the normal bladder holds about 360mls or 12 ounces. If you can tell your retaining alot of urine, Are you not self-cathing?
I'm glad your going to a URO. because you need to. I don't know how you could stand the pain of holding that much urine? Or don't you have pain with it?
Lizzie_71

[ICNDonna]

How did it go? I hope you will be getting some help.


Donna

[Mothergoose]

Not sure

Hi

I am not too sure about this new uro, he probably knows his stuff, his bed side manner leaves a bit to be desired.

He seemed rushed, he asked and answered his own questions, before I could answer before I could get out more than a word or 2.

All's he said for sure is my bladder is really enlarged, I have had pretty major retention for sometime.

He asked why I had retention, if I knew that I would not be there.

He knew I have been diagnosed with IC, he asked what other conditions I have, I said IBS, and then went to say the rest of things.

He interrupted and asked if I had migraine I said yes, bad one, went to say that can last a year at a time, but much better since sleep issues have been helped, but he cut me off.

Asked if I had MS, I said no and had been tested by a neuro with a MRI, asked about Lupus and fibro at least 3x's, I said no, but he didn't seem happy with this answer, so he asked if I had mussel pain, which I don't. so I won't be surprised if he tells my GP to get me tested for these.

He asked what symptoms I had, I started with pain I of course have a long list of IC and retention symptoms, he asked where I had pain, I said in my bladder and lower back, that was the end of me getting to tell my symptoms.
He asked if I have back problems and I said yes arthritis and past dics problems, and said I had been investigated about this too with an MRI, cat scan and neuro 2 who don't think it is bad enough to cause bladder problems.

I bet he will want this re investigated, and in truth maybe it is time to look at this again, it has been a few years and the retention is worse.

He did an in office cysto which was not too bad at all, I have had much worse ones, he told his nurse I had about 800mls in my bladder when he did this and asked how long it had been since I voided, which was about 5 mins before the cysto.

He then asked what previous uro's I had seen and what they had told me, and he actually listened to this.

He wrote down their names and diagnoses. He then decided he really did not have enough info to decided a plan of action, he would be sending out for my files from, past uros for reports and test results.

I had a urodynamics test in spring 2008, he is going to decided after he gets my reports if he is going to repeat this test or not.

My GP, who is actually my primary IC doc, I live so far away from specialist (min 200 miles, but up to Miles) and he has made a point to research, learn about and keep current with IC. He encourages me to bring him any info I learn about IC (mostly from you all). Any new treatments etc, so he can take a look at it, he keeps copies of everything I bring to him or email him.

He wants me to get copies of all my gp's test results and anything that pertains to my bladder and send them to him. When I do this I am going to write down my history, and symptoms, and progression of events in my life.

I feel it is important he knows how I feel.

As I said at the start, he seemed rushed which I don't like, I feel like I walk away ill informed and I don't feel I have informed him either, I can tolerate bad bedside manor.

I guess in the long run it will be better for him to review all my tests etc, so I don't have to repeat ant that I don't need too. In the long run he will have all the info. His receptionist said just to bring it with me when I come, he said to send it down. I am going to have it all sent to him ahead of time, I will also keep copies and take them with me too. This info will be a book worth so I think it best he get it ahead of time, or it will be another 1000 mile round trip for nothing. I feel his office should have asked for at least some of this info ahead of time.

He did mention self cathing, my Dr. is opposed to this as I have a low immunity i and already catch a bug every time I get cathed. I have been on 3 different ab's for the last 6 weeks. I have been in total retention 2 in the last few weeks. He said self cathing for a while may help my bladder muscle to work better. I am willing to do this, but I don't know I was on Ab's when I saw this uro on Wednesday and finished the Ab's that day, but Thursday afternoon I had a temp again of just over 100. My GP said to stay on Ab's till Monday when my husband has an app ans see how things are then.

This Dr. did say he knows I have retention problems but was not too sure about IC, bearing in mind I never even got to tell him one symptom I have of IC, or what I have gone through to the last 30 years.

I saw quite a few uros before getting a diagnoses, because as soon as they realized I had lg volume to my bladder I must not have IC, bladder volume is not an exclusion for IC. Or they would say you may have IC but you have to deal with retention problems first, and send me to someone else, who would say the opposite.

I had many hydro's without uros seeing the bleeding cracking, because they would put the amount of water into the bladder that a normal person bladder would be, the uro who finally diagnosed me said he put X's that amount in my bladder to see it.

So I am not going to write him off or anything, he say his specialty is IC, retention, PFD, and pelvic pain, he also teaches at the University. Being me thought I had to look him up on rateyourmd.com. Please a few years ago raved about him, but now people are writing in to run from him. I will make up my own mind.

I have my name on 3 other uro's lists to see, one of these wants some tests done prior to seeing him, which makes sense to me. then at least he will have info. I also think when I get copies of my reports, I will make copies for the rest of these Dr.'s too. These other uro are closer to where I live, are well thought of but are not advertising that they specialize in IC, but you never know who you might get, one might be a good match for me.

I go back to him in Sept.

lizzie_71

I have been going to uro's for years, it just took forever to get diagnosed, for various reason's. I got lots of other diagnoses which I either got help for or later was proved not to be the problem.

I have been in complete retention 2x's, I had 65 ounces or 2400mls.

Yes this a lot, by this time I can't move or breath, I look pregos, and I waddle around. My Dr. has tried to do what ever he can do not to cath me, because of infections. But when I say I have had enough, he will cath me. Over time we have figured out if they use a peds cath and just let it drain out slowly, I don't have worse retention problems and if they drain it slowly, my bladder doesn't spasm, so hopefully he will agree to the cathing a little more readily.


I know this has gotten really long winded, I have no one to talk to about these sorts of things and I need to sort out in my mind what I am doing and this helps me.

Thanks MG