View Full Version : nerves
09-08-2004, 04:46 PM
ok Im having some anxiety over here. I have posted already under another thread no replies so im gonna try here. Im supose to go in oct 4th for a biopsy and i believe the stretching of the bladder too. It will be under for this which im nervous about and the fact ive heard horrible things about this procedure. My doc said ill even be out of work for a week because of the pain. all for a biopsy and stretching this doesnt sound worth it to me. Im worried about the well be put under the after effects and the outcome so far as them telling me how bad it looks or worse telling me i have something worse. Im not on any meds yet except prelief because my husband and i want to get pregnant too which is another issue im having. Im so confused as to what to do to help myself and whats best to try. I have a really hard time excepting the fact i have to read and watch whatever i put into my mouth. I m finding that even pears cause me sx almost immediatly and i miss my fruit soooo much. Im very frustrated tonight. I wish they would just find and cure or at least a good treatment for everyone. has anyone gone throught the biopsy and stretching at the same time? If so how was it?
09-08-2004, 05:13 PM
HI Hopeful! I read your post and just wanted to offer my support. I'm sorry no one responded to your post elsewhere on the boards. I have not had the procedure you are talking about, so I may not be the best person to ask about it. I have been told it's one of the only concrete ways a diagnosis of IC can be made. There are people on the boards that have used this procedure and have found it to be a helpful form of treatment that actually relieves symptoms. Donna is someone I believe who has lots of experience and has found them to be helpful - Hopefully she will see your post and give you lots of info to help.
IC isn't fun. If I've learned one thing in this process, it's that we are all different. We all react to treatments and medication differently and a lot of it is trial and error to see what works best. There a lot of great wonderful people here who can help you along the way.
Good luck to you for your test in October- may the procedure go well.
Wishing you symptom free days ~
09-08-2004, 10:26 PM
I did have the procedure when I was first diagnosed and it did nothing for me. However, everyone is different and it seemed to help lots of people on here so be hopeful. Its alot of trial and error with this disease to find what works for you. Hopefully, this will work for you.
09-09-2004, 12:14 AM
Hello Hopeful...I love that name....as we all need to remind ourselves to be hopeful that progress continues toward finding a cure for IC. Of course, most of us are impatient and wish there was some way we could RUSH the process along. :dogrun: Sorry I didn't see or respond to your earlier post and I applaud you for not giving up rather posting again. I had the cystoscope with hydrodistention done just last Friday (09/03/04). It was a lot easier than I had expected it to be. I was dx the end of May with IC. At that time I was going to a different uro. that sure doesn't know much, if anything, about IC. He did a regular cysto in his office and saw a lot of inflammation, etc. that way and didn't think I needed the cysto/hydro at that time. The uro. I am going to now is a specialist in IC. I've had pain 24/7 since May and he wanted a look to see exactly what my bladder looks like since I have essentially shown no improvement. I had all the fears, etc. as you...including the "what if it turns out not to be IC after all fear" because that would mean we would have to start over at square one. If you want to pm me or email me, please do so and I will be glad to share the details of what went on for me last Friday. I have to say even though my bladder is in horrible condition, :yikes: I feel better knowing what we are up against. Good luck w/ your efforts to start a family AND w/ progress in getting your IC under control. :pray:
09-09-2004, 01:07 AM
The procedure you describe is usually called hydrodistention, or sometimes over-distention. That, along with biopsies, is the usual way to definitely diagnose IC. The good thing is that something like 50% of IC patients benefit from the hydro for many months --- I go anywhere from six to 22 months (recently I go about a year) between hydrodistentions and it's the one thing that has helped me most.
I also have had biopsies taken at various times and have found that it isn't any worse than just the hydro. My doctor keeps me in the hospital overnight, but most people go home the same day. And I plan to take it easy for a few days. Before I took an early retirement when my husband retired, I would schedule the procedure for a Tuesday or Wednesday and go back to work the following Monday.
I hope you get some benefit.
Warm healing thoughts,
09-09-2004, 01:09 AM
I have had the procedure done twice now. I did not think it was bad. A little discomfort for a day or two. My biggest fear was nothing would be found just like all the other zillions of tests preformed. It was a big relief to me to know it was not all in my head and something was going on.
09-09-2004, 01:34 AM
Hopeful, I think you will feel a lot better after the procedure just knowing that you have a diagnosis. Once your doc can say definitely what it is, he can start treating you in ways that will be safe for your upcoming pregnancy! I've had the hydrodistention done several times too. I hurt for a few days after, but in those days, I hurt all the time anyway! Your doc can give you something for the pain, or you can take Urostat to make it better. Just keep talking to your doc so he/she can stay on top of things for you. Above all, try not to worry too much between now and then. Stress irritates your bladder, and that's a long time away yet!
Good luck!!! If your doc hasn't already talked about pain meds make sure you ask. I needed them for a few days after the procedure.
I was really scared prior to the surgery, too, but the aftermath really wasn't as bad as I thought it would be. I am not one of the people the hydrodistension helped, but many people do have relief aterwards.
Also, you might ask about taking an antibiotic for a few days afterwards to prevent a UTI. It can be fairly common to develop one after.
Good luck - you'll be fine!!!!!! :kissing:
09-09-2004, 02:07 AM
I'm very sorry I missed your earlier post! Anyway, your hydro really shouldn't be that bad. I had one in March, and I was pretty terrified of it (of being put under, especially, since I'd never had true general anesthesia before)... however, it turned out to be pretty uneventful for me. I had the procedure done on a Thursday, and was back at work the following Tuesday. I wanted to return to work that Monday, but my husband asked that I stay home one extra day -- I have asthma, and had had some chest and body pain from the anesthesia, and he wanted to watch me one more day just to make sure I suddenly did not develop breathing problems. I am happy to report that I was fine :)
As for the bladder aspects, I was sore down there for a few days. The first few urinations afterwards are pretty burny and painful, and you should expect to see blood in your urine for a little while afterwards. Just make sure you have some Pyridium on hand, and make sure you discuss post-op pain control with your urologist before the procedure so that he can (a) arrange pain control with the recovery room nurses for immediately after the procedure and (b) so he can send you home with some oral pain meds in case you need them.
Anyway, I woke up pretty well after the anesthesia... I was given some water to drink, and had to lie down at the hospital for a while until I could prove to the nurses that I could pee on my own, and until I could stand without feeling ill. That didn't take me very long, and I was allowed to leave with my husband. Basically, I was told to arrive at the hospital by 9 am, and I was home resting in my own bed by about 2:30 pm or so (that includes a stop at Walgreens to pick up the scripts the doctor sent me home with -- my hubby ran in and filled them while I reclined the passenger seat and napped in the car with a soothing rain beating down on the windows.. :) )
09-09-2004, 02:07 AM
Don't know about the procedure but just wanted to wish you good luck. We'd also like to get pregnant and IC is getting in the way. It all happened after my miscarriage in April and I'm so desperate for relief that I'm even trying the BCP for a month - which obviously doesn't help the pregnancy plans!
I wish you a fast recovery and some answers!
09-09-2004, 02:34 AM
Hang in there Hopeful. I had a hydro distention of the bladder while under and felt better for a good two weeks after. I felt expanding things relieved some of the pressure. And, when they put me out to do it, it was less embarrassing I guess. No major pain and no reaction to the anesthesia. I am going under next week again for the same procedure. I am on my second uro specialist as the first could not figure everything out.
09-13-2004, 07:34 AM
I think you would feel better in the long run checking it out and knowing what's going on. I have acid reflux so they had to put me all the way under. I also have athritis and fibro so I was in a lot of pain for about two weeks. I think thatnormally things go fine and it's not out of the oridinary for them to do a biopsy at the same time. You can request some pain meds if you are hurt for a couple days afterwards. The biopsy is more to just make sure. I was anxious too about it but the possibilty of them finding something isn't very high. Please try not to stress it can make your bladder even grumpier. It will help them know how to help you better. I know you want to have a baby but maybe you could wait a couple more months and see if you can get the IC to settle down a little bit before you decide on things. Anyways I hope it goes well for you. Let us know how it goes and try and take it easy. Yah I know easier said than done. take care - Chris
09-18-2004, 10:53 AM
thanks everyone for your replies ive been busy lately trying to get ready for my upcoming cruise this next week. Thank the Lord my ic is under control right now and i will pray it stays this way through my trip.
I went to see a lady uro last week for a second opinon and i really like her. It was just for a consult. After her and I talked Ive decided not to go through with the biopsy and hydro for now. I didnt realize when i had my cysto that the 1st doc got a good look inside my bladder because it happened so fast and i was so overwhelmed with pain, but this new doc read me his notes and and had found the typical ulcer in there that goes along with IC. The new doc said that they werent doing the biopsy to look for cancer because she said they felt 100% sure I didnt have that. She said that in all the years she been in practice shes never had a 28 yr old with bladder cancer and that its just unheard of. and since i dont have history of smoking then its even slimmer chance. She said the only reason they were going to do the exam was to give me peace of mind on my IC diag. She said if it were cancer than i would be coming up with red cells in my UA's and the ton of UA's ive done show absoluetly nothing. So she said i could go through with it but that she didnt feel it was necessary at all.
My bladder is totally under control right now i dont have any pain, frequency or barely any urgency and my day trips to the bathroom are almost normal right now so I opt to cancel for now just because im doing so well and dont want to reck a good thing. I told her if something else pops up in my UA's or i just flat out get worse then maybe ill go through it but i felt really confindent in her and i dont think if she thought i had something worse shed be telling me that i dont have to do this.
Im so excited about my cruise i can hardly stand it. 7 days yeah......
well hope the rest of you are finding some relief im soooo thankful im doing well right now. Im still sticking to the diet which i feel has helped me greatly. I found that low acid orange juice today and cant wait to give it a try but i cant decide if i want to wait until i get back from the cruise. Im not taking any chances this week hee hee. take care love hopeful
09-18-2004, 11:00 AM
:woohoo: :woohoo: :woohoo:
So glad your feeling so well right now, and wow---a cruise!!! That is SO exciting :) Have a great time and when you get back tell us all about it :)
Good luck :grouphug:
09-18-2004, 11:09 AM
I am so sorry I missed your post.. If you have any pain it will be well worth having a correct dx... I had no pain and no problems with my first hydro.. My second was a diffferent story, but, that maybe from other IC related conditions I have...
wishing you lots of luck and sending hugs
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