Pre-Op w/ Urologist - what Q's?

I have a Pre-Op with a Urologist for my TAH. I have Stage IV endo, tons of adhesions, 2 very large endometriomas, about a dozen small ones, 2 egg-sized fibroids, many small ones.

All this is compressing my bladder and my ureters, causing the kidneys to back up. So, the urologist is going to be on call for the hyst. I have been told that the ureters may need to be resected and reattached to the bladder if they have endo, or if they are fibrous. They may be encased in scar tissue as well. Worst-case scenario, I end up with a urostomy.

What questions should I ask? I don't have cystocele as far as I know. I don't think they are going to do an eval - should they? I have occasional stress incontinence, but that's not surprising, considering how little volume my bladder has.

Can someone help? Any references to website will help as well.

Esme

Hi ((Esme)) & welcome
I'm sorry your dealing with so many issues & are facing surgery for them
I have no personal experience to share but I did want to list the following links to some info that will hopefully be of some help to you:

Bladder Matters Resources

Here is another link I just found that offers some excellent insight into this also:

Cystocele Repair

You can also try using the Search features to locate previous threads from others who've underwent similar procedures!

Good Luck I do hope your upcoming surgery will bring you some much needed relief! Pls keep us posted...(((hugs)))

Thanks for the links, Sheri -

Unfortunately, none of them apply to my situation. I don't have cystocele, either. My problem is the ureters being affected with endo, and the adhesions (I guess?) "strangling" the ureters. Well, that is what might be happening. I have found some sites talking about ureteral involvement with endo, but I understand it is not that common.

Thanks for you support, anyway!
Esme

Well, I finally have my date for the urologist, an hour before my Pre-Op with the gyn. Does ANYBODY have any clue as to what I should ask re: urostomy, etc.

These are some of the questions I have already:

1. Once everything is repaired, will my kidneys "bounce back" and return to normal. Will the renal pelvices shrink back to a normal size?

2. How can you tell if there is (permanent) damage to the kidneys?

3. Will you do an IVP after some time to monitor?

4. Can you tell if ureters are fibrous from MRI?

5. Is resection likely?

6. What are chances of urostomy?

7. If so, what kind would you plan to do? (ladies - help me out here - if you have one, what kind, and what kind of complications?)

8. Will my bladder "expand" again after surgery?

9. What about bladder complications - what can I expect?

10. What other kind of complications can I expect?

11. If repairs are made, how will it affect my recovery time?

So, these are just a start - any help would be appreciated - I'm exhausted from all of the other stuff, and trying to get everything wrapped up before surgery, and pain and, and, and . . .

Thanks! Merci! Aciu!

Esme

Hi Esme,

The first thing I thought of was in regard to the Urostomy. Would it have to be permanent or might you have one temporarily while the kidneys and ureters are settling from the surgery?

If it is possibly permanent then you need to ask questions regarding the post-op and long-term management?

You could also ask about what type of catheters will be in place post-op and how long for? What sort of drains and suture lines will be in place? How long will you be hospitalised and what are the post-op do's and dont's?

I hope you are reassured to some degree after your pre-op appointments. I also had a Urologist and a Gyn at my abdominal repair for the fistula and it was very reassuring to have 2 specialists in their respective fields looking after me.

Please let us know what they say,

Blossom

Hello Esme!!

It sounds like you already have some GREAT ??? for the docs--Ruthnova came up with some good ones, too. I would also ask if there are any people/former patients that have had a similiar surgery done--especially someone who is living with a urostomy. I know they have support groups, etc for people dealing with colostomies, amputations, etc--and a variety of other life changing conditions. This may sound like "jumping the gun" but it might help to know what instruction and support is available--it would make me feel less anxious knowing there are people out there who have "been there" to provide teaching and support. (ie...My mom had someone from the "Y ME" cancer recovery group visit her before she even left the hospital after her mastectomy---they provided alot of medical teaching and support).

I'm sure it must be SOOOO scary not knowing what the final outcome will be. However, you sound like a very proactive patient--very courageous and strong. GO GIRL!!!!

Good luck to you. Please keep us posted. I will be praying for you.





-endo, fibroids, PAIN, PAIN, PAIN
-TAH/SBO 8/7/03
-V V F (vag) repair 3/10/04
-leaking again!!!! 5/04

EsmereldaPea

My response is to the urostomy part. If they end up doing a permanant urosotmy see if they can do a continent urostomy (such as an indiana pouch {which is what I have}, kock pouch, miami/flordia pouch, just to name a few) There are many others just depends where they were done or developed.

As I said I have an Indiana pouch, which was formed from a portion of my large and small intestine. I have to cath myself every 3-4 hrs but can go as long as 8hrs (I try not to go that long though). I hated the idea of losing my bladder at first (more than my uterus), but I am happy with it now. (advantages -- don't have to go to the roadside stops to go pee )

I will that you don't have to go that route, but it isn't as bad as it sounds. I know of people that have had theirs 25+ years and are very happy with it.

I wish you the best of luck on your outcome.

God Bless