Cysto/hydro tomorrow...

[Ruchily]

I'm SO trying to make peace with it!

Please...if you have any advice for me...send it my way.

I will be given percocet and pyridium for the pain.

This doc is one of the docs who has written articles on IC. He even gave me a tip for sex...using popsicles to soothe the bladder/vagina! He seems like a great doc...

But I'm still nervous and feeling unsettled.

What should I expect in terms of pain? What will it feel like? I know it varies from patient to patient...but if you could tell me your experience...was it like a bad UTI or worse? Or better?

Thanks for any advice/info.

With love,

Bassie

P.S. Should I ask to wear a catheter home? The doc said this an option for me. Any advice there? Thanks again :kissing:

[Briza]

Bassie
I hope all goes well for you tomorrow! You probably saw my post in Coco's thread. I really wish I had been sent home with a catheter after my hydro. I wish my doctor had offered that to me. When you wake up from the surgery, you'll still be catheterized. If it is uncomfortable, ask for a pediatric size catheter if you decide to go home with one. I couldn't tolerate the adult size.
Best wishes! Keep us posted.

[creatingkarma]

I've never had to wear a catheter home. As a matter of fact, it has always already been taken out when I wake up from surgery. I'm thinking about you & wishing you the best luck tomorrow! I'm sure everything will be fine. Remember, deep breaths!

[MarthaB]

:) I didn't have a catheter either, taken out before I woke up, I can honestly say I didn't find at a big deal, I had a bit of burning for a few days, but that was it, but everyone is different.
I hope your cysto/hydro goes really well for you.
Take care, Martha :)

[tigger_gal]

I hope your hydro goes ok today... you may hurt a few days after...
hugs

[ICNDonna]

I hope all goes well today --- and that you will feel much better afterwards. It usually takes me a few days to feel better, but then it lasts for months.

Donna

[allmart]

I'm due to be at the hospital in less than 2 hours for my first hydro/cysto. I'm scared to death. My uro didn't explain any of it to me, he just assumed I knew everything I guess since I asked for the procedure after useless help at the gyno that dx'd me. I do not have a high pain tolerance and haven't been under general anesthesia except for my wisdom teeth when I was 16 years old. I guess I'll let everyone know how it goes. I am really interested to see how bad or good my bladder may look. I had a positive potassium test 12/16 and have done the diet and been on elmiron ever since. Started amitryptiline 2 weeks ago. I think that one has actually been helping with the pain already, but it's hard to tell.

[Ruchily]

I did it!!!

Yesterday was tough. It was hard to sit down from the pain at times. But I didn't take the percocet, just the pyridium (sp) cause I was nauseous and dizzy from the anesthesia and I was scared of throwing up. (Still not great today...but getting by. Hoping to make it without the percocet...but we'll see...).

All in all NOT a fun day! :p But I'm def. glad I did it!

I have PFD, Vulvo, and mild IC . Petechial hemmorhages (sp) and I think he said 1100 cc? (I wasn't quite awake yet). The cc is good...but the hemms make it hard to hold things in according to what hubby said the doc said.

Soooo thankful for all the support I got here! :angel: Still recovering...so off I go! :)

With love,

Ruchily

[allmart]

I just got back home an hour ago from the first hydro/cysto. Was really confused and crying when I woke up from the anesthesia.They gave me 2 percocet before I left the hospital. Already in pain again. The doctor made it sound like my IC was nothing. He said he was able to distend me to 1 Litre and then I had 2 petechial hemmorhage spots. That's when he said well if we expanded my bladder to that size it'd probably do the same thing. He really made me feel stupid with that comment for some reason. Then he said that my bladder size wasn't really consistent with IC. I'm sorry but I didn't think you had to have a tiny bladder with IC. If I have the frequency, the urgency and the pain, isn't that enough??? Not to mention a positive potassium test. He also instilled a DMSO, Heparin, Steroid, Bicarb cocktail afterwards. I asked him about it before hand since I read on here that you shouldn't have those instillations for about 3-4 weeks after a hydro. He said in his personal opinion he's found it to be beneficial to my patients. So I went ahead and trusted him. He also wants to see me back in there in 2 weeks for another instillation. I hope I don't smell like rotting milk for days. At least that's how my smell was described to me. I did ask the uro about a TENS unit too and he told me not to get ahead of myself. What is the harm in that when I know my pelvic muscles have problems? He said that he has never prescribed that but does do interstim. He scared me when he said that, but then added, you're way far away from needing something like that. I hope the rest of you recover well this week! Thanks for everyone listening. It helps so much. :grouphug:

[Janie Miranda]

Oh brother. I don't know why in the world he would have a problem with prescribing a TENS unit. This is a totally safe and non invasive way to treat pain. It has been a big help to me.

Well, I hope the hydro helps you and am glad to hear that you have a large bladder capacity. Hope you have a quick recovery.

[creatingkarma]

:woohoo: Glad you all made it through & are feeling pretty decent!

[allmart]

Does anyone know if it's ok for me to take a warm bath for the pain? I just want to make sure that won't make me more susceptible to an infection or anything. The other thing I found interesting today was that when I went to the Uro a week ago Thursday, he was positive I must have a UTI so he sent it for urinalysis and threw me on a week of antibiotics-the cycle continues lol This was after he knew I had a dx of IC. So of course I asked him before the hydro what the results were and of course he had to call his office to find out, and gee whaddya know... no bacteria present. Would have been nice of them to call me when they got the results so I could stop taking unneccesary antibiotics and gain a greater immunity to them. That just really aggravated me today. The other thing I was wondering is if I would find any pain relief from the hydro doing some stretching and light excercising?Right now I just tried to pee again-third try-since I've been home and it's too excrutiating even with the percocet. I think the warm bath might help with that, but I don't want to make things worse if anyone knows anything about either of these, I'd really appreciate the info right now. Thanks to everyone for listening and being so understanding this morning! :grouphug:

[MarthaB]

:) I am glad you've come through this whole procedure okay, you probleby will feel sore for a few days.
I don't understand why uro's still think that you have to have a small bladder to have IC, that's nonsense, my bladder while awake is 500 cc, ( half a litre), and he could only distent my bladder to 500 cc with the cysto/hydro, that means I have a small bladder, but my bladdersize while awake is perfectly normal, he also found minor inflamation, but refuses to diagnose me with even mild IC.
I think the positive pst should have been enough to diagnose you.
martha

[allmart]

Here's the confusing part... after he said all that to me, he said call my office and schedule a follow up for 2 weeks and we'll do another instill. If he suddenly thinks that just because of my bladder size and stuff that I don't have IC, then why in the hell would he continue these horrible dmso cocktail installs? He said something like well since the instills help you-but I already told him that I had 2 rescue treatments at the ob gyn which are pretty much the same as his except they didn't even know what DMSO was and I had no results from them-but it was only 2 of them. I won't believe that I don't have this-all the other sypmtoms are right on the money. I have been struggling with bladder issues since I was a child. When my gyno mentioned IC I found this wonderful site and read the personal stories and I came across one that sounded like I had written it. I knew before the potassium test that it would be positive. That and as soon as it was mentioned to me I started paying attention to my bathroom habits. If I didn't have something wrong, I wouldn't be peeing 8 times in 9-10 hours. Thanks for letting me vent... again! You guys are lifesavers! :grouphug:

[Ruchily]

I can't remember...do you have a catherter atm? If not...I would get all your results and find a new doc!

My doc was awesome and is totaly there for me (though his nursing staff is hogwash!) and this makes a BIG difference in how I feel about things. This is a terrible DX and you shouldn't have to deal with an awful doc to boot. :(

I'm so sorry you have to deal with all of this! :grouphug:

Sending you lots of :love: and feel free to PM...I'm here for you!

Lots of love to my sis (we had our tests done the same day...I say that makes us partners in crime!!!) ;)

Ruchily

[allmart]

Thanks for the support Ruchily! I am going to see the uro again on Feb 10th for another instill. I am going to try and discuss PFD with him because it also makes complete sense from the research I have read online. I tried doing some of the recommended excercises for it and realized that those muscles aren't in as great of shape as I thought! I do know there is a PT here in St. Louis that specializes in PFD, so hopefully she'll be covered under my insurance. I hope you're starting to feel better from your hydro. I'm doing ok today, my main problems were the side effects from the percocet they gave me for the pain. I had severe headaches after taking it and can't get enough fiber lol I stopped taking the percocet on Sunday and just went back to my usual darvocet and pyridium-that seemed to be a lifesaver after the hydro. Let me know how you're recovering and if you have noticed any positive benefits from it yet. :kissing: Hang in there sis!

[kjones1]

Ruchily, Im so glad you had a positive experience. Ive been away from the computer (school started back up). Im so glad your doctor was good to you and you felt comfortable. You are strong! Remember to ease back into your routine and rest, rest, rest. Im sorry you have IC but at least it is mild (mine too). And now you know what you are up against. Not a fun diagnosis but you are now on your way to recovery. Keep me posted.---Kelly

P.S I may have to steal some sex tips from you. Anything else your doc say? Im still not having intercourse but Im getting closer (doing my kegels).

[allmart]

Kjones1-it still says you have exceeded your mailbox limit. I tried to send again after you sent me a message and all I get is that exceeded message. Sorry to post in the forum-didn't know of any other way I could let you know.

[Ruchily]

I didn't know I had to do this :bonk: :bonk: :bonk:

Thanks for letting me know...and no worries, I'm glad to be in touch with you *hugs*

Thanks again for letting me know...you're the best :) :kissing:

[kjones1]

I dont know how to empty out my inbox so I can get PMs. Can anyone help me? Im feeling really silly--KJ


Allmart and Ruch.... once I figure it out we can finally talk.

So annoying :bonk: