I am scared!

[Dolby]

I am having my first treatment this Thursday 4/8, I am really scared. Could someone tell me what to expect? The Dr says I should be able to return to work Monday. Is it very painful? Do they give you something for the pain.

:hi:

[Sarojini]

Hey there... ok, I responded to your PM but hadn't seen your post yet :hi:

Ok, if you are having a cysto/hydro, everyone is different with that. Are you having general anesthesia so you'll be completely asleep? That's what I had when I had my cysto/hydro. If so, it should be okay for you.

Most urologists do provide pain medications for you to take after the procedure is over. I was given Dilaudid while still in recovery, and my uro also wrote a prescription for a few Percocets and some Pyridium to take when I got home. Basically, I had some bladder soreness, and it hurt to urinate for about a day and a half after the cysto/hydro. Also, you can expect to see some blood in your urine after the procedure... for me, that part went away in 16-24 hours (I was kind of out of it from all of the anesthesia and pain meds, so I didn't really notice how long it took to stop).

I had my cysto/hydro done on a Thursday as well. I stayed home from work the following day, and rested the whole weekend. I thought about going back to work on the following Monday, but my husband asked me to stay home one more day... I am asthmatic and had a lot of chest and lung pain after surgery because of the intubation (breathing tube insertion) while under anesthesia, and he wanted to watch me for one more day to make sure I didn't have a bad attack. I was fine though and returned to work Tuesday :)

Hope this helps!!

Jen

[Dixiefireball]

for some people it helps them so much and its wonderful for them it take the pain away for a while and they go into remission.
other times it could go the other way you may have pain a few days the doctor should give you something either way to help you threw it.
and again it could not help at all.
it could go either way but remember no matter what happens and i do pray for the best for you. we are here for you and we do care
please let us know how you are.
sending you hugs and prayers
Rhonda:kiss:

[SharonA]

Hi...

When I went through this procedure (August 2001), I was so scared that everyone in the pre op knew it. I guess I was shaking so badly that it was very apparent that I had a major case of the "scareds". :yikes:

The procedure only took about 15 to 20 minutes. When I was awakened in Recovery, I felt a burning in my urethra. Come to find out, I was still cathetized. When they removed the tube, the burning went away. They watched me for about 15 minutes, helped me sit up, gave me a pain med (sorry I do not remember which one), and sent me on my way home with a prescription for pain meds. They also told me to try to not void for 2 hours since they had instilled DMSO while still under the general anesthesia. My husband was with me to drive me since I was told that I would not be able to drive home because of the meds.

When I got home, I went immediately to bed to rest. I did not go to sleep but rested for the 2 hours and then got up and urinated. That burned a lot, like you have a UTI, and there was a small amount of blood mixed in. The burning and blood remained when I voided for couple of hours, decreasing each time I went. I rested most of the afternoon and felt pretty good...better than I expected. I slept well that night. I did not take any of the pain meds after the one they gave me in post op since I really was not in a lot of pain.

The next day, I felt fine. No burning or blood when I voided. I did rest, but felt pretty good.

I hope this helped relieve some of your "scaredss". Let us know how it went and what the doctor says...:kiss:

[Sarojini]

Hey Sharon... that's interesting that they told you not to void for 2 hrs after your c/h!

They wouldn't let me leave the hospital until I proved to the nurses that I could pee on my own.... which was fine with me because the second I woke up in recovery I sat bolt upright and said, "Ow. My bladder hurts and I have to pee. Wait, do I have IC??" And my uro patted me on the head and said I certainly did have IC but that I should lie down.. and then he told the nurse to give me some Dilaudid and went to his next surgery. LOL!! :lmao:

They wouldn't let me pee until I got back to my room though, because they'd instilled DMSO for me too... but there I was, in my hospital gown which for all I know was flapping open in the back like a bad movie ;), clinging to the wall because I was tipsy from the anesthesia and the post-op Dilaudid, dragging an IV pole and a nurse behind me on the way to the toilet.

My hubby said it was quite a sight...

And I can completely sympathize with everyone who is nervous before the C/H... I was TERRIBLE. I was squeezing my hubby's hand so hard he was complaining I was about to break it, and I was saying things like "What if I never wake up?" loud enough that I'm sure the other patient could hear me. The nurse anesthetist had to come out and inject me with some kind of sedative before they took me in. That took the edge off and my hubby said I quieted right down. :)

Jen

[SharonA]

Jen....:biglaugh:

You have me in stitches. What a picture you have painted. The reason why I am laughing so hard is that you are describing me. I was telling my husband how much I love him and to never forget it, no matter what happens. I was given a shot to calm me down, too. What a mess I was. I was sooo bad:shake: What a baby...she says totally red in the face from embarrasment.

They wanted me to leave the DMSO in as long as I could. They told me 2 hours and I am so compliant that I never questioned them and did what I was told...up to the exact minute. I also did not want to pee because they told me it would probably hurt and wanted to delay that as long as I could. Now the real truth comes out. :D

[Sarojini]

Sharon! :biglaugh: That's funny!! Well... now at least I know I am not the only one who was a complete baby about the procedure! It is very embarrassing, but I couldn't help it. I was terrified of the anesthesia :) It was the first time I'd been put way, way under like that...

Jen

[SharonA]

Dolby...I hope all this confessing between Jen and me has put your mind at ease or, at least, given you a good laugh. :D

[Dolby]

I really thank all of you for your messages. I don't feel so alone any more. It is wierd because all of this sound just like me. Something came up, and my surgery was moved to 4/22. I will keep coming to this site though. Very helpful!

Thanks everyone.............

Sylvia (Dolby):kiss:

[Babs RN]

I have had 2 c/h done--both different experiences, neither of them negative. The first one was also my diagnosis. I had general anesthesia which was good because we nurses can make horrible patients to have us drugged and talking too much. I also had DMSO put in the first time. There was blood and that wonderful Pepe LePeu Eau-de-Garlic smell. My uro at the time gave me pain pills and an antibiotic to take home. I had to hold the DMSO for an hour and that was the worst part for me. They just knocked me out with IV drugs until the hour was up. I actually felt so much general relief(I tolerate anesthesia pretty well too, but that's just me and my high speed liver god bless it) that my in-laws came and got me and I went to Disneyland for that day and the next week.(trip planned prior to IC intrusion) The second one I had on a Friday without DMSO this time and had moderate pain in recovery(had general anesthesia again) which was taken care of, was given oral pain meds at discharge and went to work on Tuesday. Both pretty decent experiences, and I had complete pain relief for about 6 months the first time and 2 months this last time. Good luck, feel free to ask any other questions that come to mind.


Hugs,
Barb

[lacey231978]

Sharon and Jen your stories are hilarious!!!I have been put way under before so I kinda know what to expect..about 8 yrs go I had to get a laproscopy(tubal pregnancy surgery).I am still kind of nervous about this procedure I also have IBS..so the min I get nervous or anxious about something the tummy problems and running to the toliet begin.It is such a pain in the butt to have problems urinating and problems with your bowels.I just recently found out I had gall stones and a right ovarian cyst!!!:cussing:
So the bad news fairy has been really sticking it to me lately.I am slightly nervous now...i bet the day of surgery i am gonna be so nervous ill be trying to run to the toliet before hand:lmao:
I just hope everything goes well and they find out whats going on with me and all this lower back pain and pressure in my lower abdomen along with the frequency and urgency!My back hurts so bad sometimes that I feel like a 75 yr old women when i bend down and stand back up straight..holding my back and going"owww"
I cant wait till all till all this gets taken care of.Have any of you had the constant feeling of the IC symptoms but then they turn around and go away?I have been 2 weeks free of any of the symptoms untill last night!!!well all thanks for the laugh..even though its a serious problem--you all made me feel a lil better about going in for my first cystoscopy:love: :grouphug:

[Sarojini]

Hi lacey231978-- I'm glad you enjoyed our stories :) At the time I didn't think it was funny at all, but now I can definitely laugh about it :)

It really sounds like you've got your share of health problems right now!! I'm sending lots of hugs to you for support :grouphug:

As for having the IC symptoms going away and then reappearing, yes... it's definitely happened to me. I just had a few weeks of relatively normal days, and I was convinced the DMSO instills had worked like magic-- and then of course, starting last Friday, I started having periodic symptoms again. I told my uro about it today at my instill. I also told him I was tired of having instills. :) He said to take two weeks off from the instills and if I was still having frequent symptoms to call him, and we'd work something out--- more instills, different instills, other oral meds, and the like.

Who knows... IC is a real pain.

I have to admit though, I have many more good days now than before I started treatment!!

Jen

[Indy]

Just be careful when you wake up and the nurses offer you something to drink. I was actually offered cranberry juice! I couldn't believe it.

[SharonA]

Indy...:yikes: cranberry juice :yikes:

[ICchell]

Jen and Sharon
That was so funny:biglaugh:

Lacey ,Good luck on your procedure...I have IBS badly right now its almost like diahrea and :hiding: hemmoroids,its so painful.
Does anything help your IBS???
Happy Easter!Michelle

[MelanieJ]

Dolby,
My first urologist, who was ignorant of many things related to IC, would not give me anything to take home other than Pyridium for post procedure pain. I still daydream about inflicting some pain on some of his various body parts in the hopes he might develop some compassion. ;) Needless to say, I got a new urologist.

So, please be sure to ask for something to help you with any post-op pain. You do not have to suffer!

Good luck!
Melanie J.