Having a cysto soon and scared to death!!

[LauraLynn]

Hi there this is all new to me. I need all the help I can get!! I have been struggeling with bladder problems for a year and 1/2. I finally went to a Urologist. She said I was a classic IC pt. 38 years old long history of bladder problem so on and so forth. She did the potassium test three weeks ago and I have been in pain ever since. When I went back she said she felt the test was negative and wants to do a cysto with distention.

Here is my problem. I am scared to death!!! Three years ago I had a lap done for endometriosis. The idiot that intubated me left me with a fat lip, scape down my throat and I woke up paralysed on the table. It was a horrific experience!!!!

My question is .....what should I expect to feel like after the procedure??? Am I going to be in pain (not that I am not in pain daily now)? How long will I need to be off work. Any thing you can tell me would be greatly appreciated!!!! How long does the procedure take?? Please Help!!!! I have been crying daily and I am really depressed!!!

[dyno]

Hi and welcome to the ICN. I understand your fear, everyone gets scared before things like this. One thing I wanted to mention after your bad experience before. The hydrodistention can be done with different anesthesia than being put out. You need the anesthesia, but some on here have chosen to have a spinal instead. Might be something to discuss with your Dr.

As far as afterward, everyone is different. You will probably have some pain afterwards, and will want to be off work for a few days anyway.

Here is the link to the ICN handbook. You can learn a lot about procedures and other things in there. Read about the diet, that can help a lot also.

http://www.ic-network.com/handbook/


We will all be thinking of you and will be here to answer questions.:grouphug: :kissing:

[kelly McC]

Hi and :welcome: ,
Sorry to hear your feeling down . I recently had my cysto done. Mine started at 8:00 A.M and I was home by 10:30 .Sounds like your prior experience was horrible. I hope this time it goes much better for you and I will keep you in my prayers Everyone is different in how long it takes to recover.I would check with your doctor and see what they recommand. I had a lapo with cysto/hydro all at the same time so I was out a little extra time.
Best wishes ,
Kelly:pray:

[classics]

LauraLynn,

I'm scared too. I never had the cystoscopy and it's been almost six months since my problem started. I've been able hold off on it until we can figure out if my problem is hormone related, or what. But I understand your fear completely because I've had similar traumatic experiences with other procedures. I hope coming here and getting emotional support helps you get through the tests. I'm anxious to read how it goes for you. Good luck!

[kcjmom]

I had one done just over a month ago and I had no problems at all!
I was in at 7am and was done sometime around 10:30.

[hawkbabe]

I WAS SCARED OF THE UNKNOWN BUT IT WAS A MUCH BETTER EXPERIENCE THAN I HAD EVER IMAGINED. EVERYTHING WILL BE ALRIGHT!
GOD BLESS YOU:angel:
:kiss: KIMI

[Katrina]

((((hugs))))) I am sorry you are suffering. All tests are scary. Seems odd to me that if the potasium test left you in pain for days...that you had a negative result?:hmm:

Anyway:welcome: :welcome: :welcome:

We will help you through anything. Let me know if there is anything I can do for you.
:kiss: Best Wishes

[Kimberly31]

Just remember that everyone responds to EVERTHING differently,,,,,,,,most posts you read the advice or experiences are so different! Which is not a bad thing at all. Just tells you that you really never know how your body is going to respond to something.
Cysto/Hydro I have had 2 and the first one I was down for about 3 days. I just had another one done about 2 weeks ago and still struggling with some bladder pain. I also have a very very advanced IC bladder too.
It is really hard to know how you will respond. But you can remember that these is nothing you cant get through when it comes to your IC health. It is so much of a trial and error disease!
Can be very annoying.......lol
I most important bit of advice I can give you is just to have the procedure done and plan on staying down for a few days and then just go from there and do what you can. I know that can be hard if you work outside the home.
The plus side of the hydro is that alot of times it can put you into a REMISSION and/or give you between a month and/or 6 months.
So it can be considered THERAPUTIC for most IC'ers.
With that I wish you luck and please keep in touch with us and let us know how you are doing!
We all care very much:thumbsup:
Kim

[poetgirl]

I had a cysto/hydro done several years ago and I was in some discomfort for several days afterward. I also had a urethrotomy done at the same time so it's hard to know how much of what I was experiencing was just a result of the urethrotomy or also the cysto/hydro. However, once I was home, I was able to resume some activities a couple of days later (I remember going to Target with my husband, so I do seem to have been able to get around OK.) I was not intubated during the procedures, just given general anesthesia and everything was fine.

Good luck!!

[LauraLynn]

WOW!!!! Thank you all for your support!! I am feeling much better knowing that I am not alone. I just can't wait to have an answer to all my problems and get on the road to recovery or what ever it is I need to do to keep this thing at bay. Of course I have not been offically diagnosed but all the info I read is me in a nut shell. I found out today that I am scheduled for May 10th. I feel good about it!! A lot better now that I have read all of your responses and other posts. Thank you all so much !! I am going to continue reading and I will let you all know how it goes.

Thanks for all your kind words and support!!:kiss:

[felineperson3]

LauraLynn,

I realize everyone has a different experience with any treatment, but I am thankful that I had my cysto/hydro done. I , like you, was very anxious about the procedure at first. I tried to find out as much as I could about what to expect beforehand and this site was very informative and helpful in that regard. I had some pain for a few days afterwards, but nothing any worse than some of the pain I had prior. My worst pain was the first time I had to void right after the procedure. Since the procedure I have mostly been in remission. Before the procedure I had tried Elmiron for 2-1/2 months and then went off of it as it was worsening my IBS symptoms and I was also starting to lose hair. I didn't feel it was worth the money or time to continue it with already having side effects and not knowing if it would even help since it usually takes from 6-12 months to know.

Many times our fear is more difficult for us than the thing that we are fearing. My prayers are with you that God will give you peace and comfort about this. :pray:

For now I am just on Prelief when I eat and 2.5 mg. Ativan at night if I need it for rest. I do thank God for the remission period that I've had and I hope and pray it continues. :pray:

Hugs & blessings to you. :cat:

[vtorrey]

Hi! I am scheduled for a cysto/hydro for April 4th. I am alittle nervous
about the pain afterwards. I have yet to be on any meds for IC..the
doctor said after this test she will know hopefully if I have it. Once I
found this website on my own I am convinced that I have it. I feel
like I am reading about my whole life when I read about it. I have
been having problems for years and no one ever knew what was
wrong with me...went to several urologist! I have been reading alot
of threads and I am so impressed with the level of caring and support
everyone is giving. It is such a comfort to know that I am not a
freak! I was really getting into a depression until I found this website!
Thank-you so much to everyone! Vicky

[ICNDonna]

Hydrodistention has been a major treatment for me for all of my thirty years with IC --- I've had something like 37 or 38 now (can't remember for sure without checking my medical history).

I absolutely detest general anesthesia --- I seem to want to wake up with nausea and vomiting. So I choose spinal anesthesia for my hydros. It's much easier for me --- and no intubation, which I don't like because I always have a sore throat afterwards.

It's completely normal to be nervous about any surgical procedure. I still get nervous every time.

I usually plan to take it easy for a few days afterwards. When I worked I would have the hydro on a Tuesday or Wednesday usually --- and return to work the following Monday.

The absolute worst part for me is the first few times I urinate and it feels like even my toes are turning inside out. After that, I do very well.

Sending encouraging hugs,
Donna

[DeannaM]

LauraLynn,

I have had several (around 15 or 16) over the past 7 years. I get a lot of relief from the procedure. My pain almost always goes away for up to several months, with the exception of a flare once in a while. My bladder capacity is much better, so I am not going as much.

I have had a few bad experiences with the anesthea too. I woke up a little to soon once and had a panic attack because of the tupe in my throat. I also experience a lot of nausea from the anesthea. Luckily the doc's have found a good mix of anti-nausea meds to keep it under control. The first few times I was sick for 2 days after.

Regarding pain, its different for everyone. I am usually uncomfortable for a few days, but taking the pain meds regulary for those days will usually keep it under control. A lot of people have chosen to get a spinal rather then the general and had great results.

I will keep you in my prayers!

Deanna

[vtorrey]

Yikes I never knew they put a tube down your throat! I have been put
under many times and never woke up with a soar throat so I never knew it!
I am more nervous about getting sick afterwards since I also have been
very sick with it too. Just wanna get this over with! Hopefully it will help
with the pain! Thanks! Vicky