What to expect?

[Braedley]

I'm scheduled for my first cysto/hydro Feb 7, and was hoping people might be able to offer some wisdom on the procedures? I've been reading up in here, but still had a few questions:

I was wondering how long afterwards was the discomfort from the hydro or was relief fairly soon to follow? Was it days or weeks till improvement?

Also, did anyone come off their medications after having a hydro done and if so, how long did you wait afterwards till you came off the meds?

How long have people seen relief from a hydrodistention too/how often do you have them done?

My uro won't prescribe pain meds for afterwards, so my husband made me a doctor's appt for the following morning as our family dr WILL give me some if need be, thank goodness!

We want to start TTC this spring, but are waiting to see how this goes on the 7th first, just don't really know what to expect or how it'll take for me...My family dr feels this will help, and I'm game - had 2 hrs of sleep last night - first big flare up since Nov/Dec but enough that I didn't sleep and called in sick to work...I don't often have major problems, mostly around horomonal changes (ovulation or period) or if i eat something bad (which is really rare!)

[Babs RN]

Everyone is different but in my case, early in my diagnosis c/h gave me improvement for 6 months or so. I have never completely been able to go off the meds, but was able to use the cystos for treatment for about 2 years. I usually found the first couple days the most painful for me. I am one of the oddballs that has had IC that has progressed so I don't get the improvement I used to. The procedure itself is pretty quick though. Best of luck, I am sure it will go just fine!

Hugs,
Barb:smile tee

[dg2901]

Good luck with your procedure. With any hope you'll be one who notices improvement afterwards.

take care
diana

[Braedley]

thank you for your feedback - my husband is being very optimistic, given how my condition behaves, etc. and with any luck, we'll be able to go off the Ditropan by end of March to start TTC :pray:

anyone else has any info or experience, I'd love to hear them!

[aprilchen]

Hi,

I just had a hydrodistention/cysto on 1/18. I had myself all freaked out that it was going to be SO painful and it really wasn't that bad except for when you urinate. They will tell you it is normal to bleed a little in the urine afterwards and usually the doctor will prescribe something to help with pain afterwards.

The biggest thing is that you must make sure you urinate afterwards...in fact, most won't let you leave recovery until you do. A couple of days after mine, I had to be catheterized because I could not get my bladder to work. So, yours may go off without a hitch...just ask the anesthesiologists for some Versed or something to calm you down before you have it. Nervousness while in pre-op can make everything worse! Good Luck and God Bless!

[ICNDonna]

Hydrodistention has been a major treatment for me for all of my 32 years with diagnosed IC. I have had forty. I go anywhere from six months to almost two years between procedures and had my most recent one in February 2006. We schedule one when my symptoms return and none of my usual treatments help. I usually take it easy for a few days afterwards.

When I had my first ones, I did have some retention problems, but that hasn't been a problem for years now.

Donna

[humpieumpumkin]

I had a cysto yesterday. My doc 'passively' stretched my bladder while I was awake only on local! Well it hurt really really bad like 7-8 but he acknowledged that he was hurting me, but explained why it was nessacary for me to be awake. Im glad I was now that I look back. I have a very unusual case of IC when it is visable without hyrdodistention. I was shocked at how my bladder looked. I discribed it yesterday as severly blood shot eyes with round red spots all over it. The spots were about the size of walnuts on camera but were not raised. Im glad I got to see this for myself, although it was indeed pain that could have been avoided with anesthisia. My doc promised me that if this helps, he will do my next one with anesthiesia now that I have been diagnosed. My experience is so far pretty bad pain on urination-like 6-7 but its my badder neck that hurts like when you get catherized. Its a stinging pinching sharp pain. Like the others said it is only on urination. Today it is almost gone and my pain is 3-4 on urination. pyridium is helping me alot, and so is the codiene. You will have a painful heavy burning sensation right after in your bladder and it last for an hour or two. After that is just on urination! Good luck I hope it helps!

[Braedley]

it sounds a lot less scary than I've anticipated! The clinic has said most people they've treated have seen comfort from having them done, and none of their patients have required weeks off work or anything like that..I have the operation Feb 7 and return to work the 12th so I think that will be sufficient time to recoup and rest

I will definitely update once it's done and am keeping my fingers crossed that I can come off my medication by April 1 or so to begin TTC! The diet is a wonderful thing, hopefully with the cysto-hydro I can manage with that alone

Thank you all so much and keep posting on your own trials and tribulations!
:smile tee

[Billsbaby]

hey,my first one is Feb.6! so maybe we can compare and whine together afterwards!!!

[aprilchen]

Does anyone know if physical therapy of any sort has ever helped? Also, what about the relationship between the pain, urgency and frequency and the psoas muscle? I had an abscess about three years ago and have chronic back pain with the bladder problems that were diagnosed as IC on 1/18/07.

Thanks.

[Braedley]

Billsbaby, for sure! perhaps if it's ok, I can PM you (and vice versa) afterwards?

had flare ups off and on since Wednesday, Thursday night and yesterday were the worst! - extra strength TUMS and vanilla milkshakes to sip and lots of heat and sleep - hence being up at 1 a.m.! (napped too long!)

Can't wait to see how this goes, I really hope it helps!!

[TaysProudMama]

Good luck on having a good outcome! It is painful,but of course pain tolerence is different for everyone and your body's reaction will be different than mine..but any pain from the operation should subside soon, and if it doesn't,your doctor is always one phone call away :wink:

[Rebeccanne]

I had my first hydro and cysto. 2 days ago. it wasn't too bad, but the first thing I did when I woke up from anethesia, was cry in pain. My uro at one point was trying to show me pictures of my bladder, but I was hurting so bad I didn't gave a hoot. My pain was a 9, close to a 10. Luckily the doctors started to give me all kinds of pain medications to get the pain down to a more tolerable level (which was a 3) so luckily they got right on that, because it was the worst pain I have EVER experianced.

Forunantly, this isn't the case for everyone. Some people experiance no pain at all... Lucky them!! But I was given some pain killers to take home, so that has also helped with the pain. But it makes me incredibly sleepy. I slept most of the day yesterday.

I will do it again in a heartbeat if I notice the hydro. has worked... but for now, its hard to tell.

[mary124]

I have had about 10 of them, they help to some degree. Both of my Uro's have told me that I have a severe case of IC. Luckily, this helps for a few months, as I'm not a good candidate for anything else due to other health issues.
Like others have said, you will have some pain upon awaking and they will give you something. Most doctors will give you a prescription to take home and get filled. I have my hydros done on a Thursday and by Monday I'm usually recovered enough to go back to work.
Good luck and let us know how you are doing.