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Update from Urologist


Guest Mary from OH
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Guest Mary from OH

Thanks for all the prayers! They must have worked! (Well, at least somewhat!)

Well, I went to the Dr. for my latest round of tests (cystoscopy) and results from CT's. CT's are good. But, the cystoscopy found multiple polyps in my bladder. They *could* be causing the bleeding and the other problems I have with voiding. Now I have to go through more testing. FUN! At least we're not talking about the big "C" anymore. At least I think... He didn't do any biopsies or anything. I have no idea how they tell if it's polyps vs.small tumors, probably by visualization; however we were only looking at them via a cystoscopy. But, he's the dr.

Now I get to do a Urodynamic study!! Woo Hoo!! Has anyone else here had to have one of those done?? I'd like some pointers on how to get through that one!! Of course, it couldn't be scheduled until Feb. 2nd and my appt with the Dr. to go over the results isn't until Feb. 13th!! More waiting!! B)

Thanks again for everyone's support!!

B)

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Hi Mary,

I'm soo glad that it isn't cancer you have. Although you hate to have anything more wrong, I'm glad you have a diagnoses. As for the waiting it seems like that is all we do, LOL. At your next apptmt is the doc going to go over the treatment plan for you? Keep us updated on how you are doing and how you make out at your next apptmt.

Jacquie

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Guest Mary from OH

Well,

I'm not "diagnosed" as of yet... He "suspects" that the polyps *could* be causing the problems... It was all kind of irritating actually. It kind of reminded me of the POTS run around. I finally started asking questions about the polyps breaking and bleeding like in the intestines and that's how he decided to do more testing. Then, he also was brain storming some more as a result of my further questioning and suspicions of the polyps and he was explaining how in some "cases" "sometimes" the polyps can clump together and reduce the flow of urine, etc., etc.,...

So, that's why the urodynamic studies. It's VERY involved and doesn't sound very fun. It's quite invasive and involves catheters up your rectum and ureter and measuring flow, pressure, time, amount, etc.... Sounds like a grand old time!! B)

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hi mary -

i'm glad that it looks like the scariest of scenarios isn't what's going on but sorry you still don't have definite answers. i've had urodynamic testing twice and honestly - while it's not particularly fun - it's not the worst of test. awkward, yes, but not the worst. i had my cystoscopy & first urodynamic testing last jan/feb so you're following in my footsteps a year later :angry:

of course my opinion may be slighty jaded as i'd had an indwelling foley cath for a month prior to the first time i had the testing so i was SO thrilled to have it out that they probably could have done anything to me B) and - sorry for the graphics - but b/c i've had to use enemas for ulcerative colitis the sensor in the rectum was hardly even noticible to me; it's pretty tiny.

at one locale i also had some electrodes stuck here and there; at the other i didn't. other than that they ask you to come with a full bladder, or at least not empty, and have you naturally empty what you can on your own before getting hooked up to anything. the recepticle that it goes into is pressure sensitive to give them info re: the rate of flow and whatnot. if you cannot empty fully yourself then they'll cath you to see what remains. or maybe they always do to make sure....i'm not certain about that as it's always been a given for me that i've hardly gotten anything out on my own.

then you'll be "hooked up" to the catheters, sensors, & possibly electrodes. the catheter into your bladder is small and is used to fill your bladder up fully with a saline solution...think IV bag but rather than an IV....you get the idea B) the sensors then go into your bladder & rectum. like i said they're really tiny so thus that & the catheter "sharing" space isn't a problem. then electrodes get stuck on if they're being used...just stickers essentially in 2 or 3 places "down there".

they then may have you do a bit of "practice pushing" to make sure everything's hooked up okay to the machines. and then they'll start filling you up with the saline and will ask you to tell them when you feel certain things. first when you first can tell something's going in, then when you feel like you "could" go to the bathroom, when you "would" go, when you absolutely have to go, etc.

they're only allowed to fill you up with a certain amount (i.e. "normal" bladder capacity) so i never even get to all of the "tell me whens" b/c my sensation isn't right & i don't feel the need to go when i should. they've been intrigued with me both times.

then...after you're full they'll have you empty what you can - again into the sensored recepticle. i didn't mention before but the whole time you're half sitting (sort of reclined a bit) on a goofy chair/table that's sort of weird b/c it's cut out to allow you to pee.

i think that's about it. once i could see the screen with the sensor info and the like and asked questions since it was my second time so i had more of a basis for questions (as i wasn't new to the urology world at that point). and i'll say that both the nurses i had for the testing were INCREDIBLY nice.

hope that helps (and isn't too much info!)

:lol: melissa

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Mary!

Whew to it not being the big 'C', but ugh to the unknowns the upcoming tests...

As soon as you mentioned the urodynamic study I was hoping Melissa would chime in since she's the expert! :) I needed the education on that study as much as you did. I went to see a urologist the other day and he was quite hostile...but that is nothing new right? So, he said, well he'd 'do some tests if that's what I wanted'...

He said I should schedule it and that's that. He didn't tell me the name of the test, but I knew the name and the gist of it from Melissa...but now that I read all that is involved in the test I am just blown away that he didn't tell me any info. about it. When I asked him to elaborate he said, well, he didn't do it, the nurse did, so he didn't know! What???!!!

It sounds a bit grueling...but doable. Although, seeing as I can't sit up that long, I am not sure how I would do it? I was lying down for the whole appt. and he never said "Will you be able to recline long enough to do the test?"

Mary, you would have been so proud of me...I just know it! When I checked out the secretary asked me when I wanted to schedule the test and I stood up for myself and said, "I'm sorry, I don't feel comfortable coming back to see this doctor!" Her eyes popped out of her head.

Now that I hear from Sunfish what is involved in the test, I am glad that I didn't schedule it with a doctor who I felt so uncomfortable with.

Okay, THAT was serious rambling. Sorry. For some reason I just wanted to tell you that story! Probably b/c I always feel like you watch out for me and protect me and I stood up for myself!

Anyways, really need to get back to YOU...what you are going through sounds so scary...I am not so good with the blood thing!

If you do have cysts and that is causing the problem, what can they do for it?

I am glad Melissa detailed the test for you...I think that you will be fine...doesn't sound fun, but I suppose there are worse tests??? Like, the tilt test? haha!

Thinking of you...thanks for updating us and thanks for the kidney thing...I haven't gotten to look at it yet. I don't get a whole heck of a lot done in a day! (Or anything really...:()

Love and hugs,

Emily

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I've had it done too, and my feet didn't reach the floor to balance myself, which affected my peeing abilities. Don't ask me how but it did. I pee like a little old man with bph. It is not comfortable simply because they way overload your bladder. But not painful. If you can do a cysto, you can easily do this test as the catheter is so much smaller.

Polyps can become very friable and bleed very easily. And in pretty large quantities. As a rule, they are very easy to distinguish from other things, they have a very classic appearance. I have a friend who's had bleeding episodes from polyps in her bowel and it can be pretty profuse and then you look at the polyp size and go what the?? Because they can be very small. So hope they get to the bottom of things, so to speak, and get this resolved. Ah the lovely waiting game....

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Guest Mary from OH

NEW UPDATE!!!!

grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!

OK. Guess what??!! I've been sore since my cystoscopy and last night I started bleeding. Since noone told me anything about any "complications" from the test, I figured I better call in to the dr. I called the dr on call. It wasn't my dr, but another in the practice. He was VERY nice (too). I explained to him my history and that I had two normal CT's and that I had the cystoscopy yesterday and that I was in "discomfort" and that I had started bleeding (a little). He asked me what my treatment was for the bleeding for 9 days was. I told him nothing. He was SHOCKED!! He also informed me that there is NO SUCH THING as POLYPS in your BLADDER and that the Dr must have used that word so that it was a "familiar term" for a patient that it had to be tumors or lesions or something like that!!! Then he asked me if he did biopsies. I said no, he was again SHOCKED!! I'm thinking to myself WHAT THE &*%$ is my Dr. doing!!????

BIG SCREAM!!!!!!!!!!!!!!!!!

Guess I'll be on the phone first thing on Monday!!!

B)

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Oh Mary, how frustrating!!!! Did he suggest anything to help you through the weekend???? I'm just sighing and rolling my eyes for you!

I am glad you asked the question about the urodynamic study. I was going to pm Melissa because Dr. Grubb told me I had to have one too. Now I have a good description - though I still don't want to do it! B)

Keep us updated!

~Roselover

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