first cysto/hydro w/urodynamic studies yesterday

[Braedley]

I had my first urodynamic studies & cysto/hydro done yesterday and I have to say, I'm feeling pretty good! It was very embarassing to have people in that region sticking probes in places then having to pee into a funnel type thing while sitting on this special chair, but they were very kind to me and patient...

Yesterday it felt like I was trying to pass razor blades the first couple times I tried to pee when I got home (I think they must have frozen something when I was out b/c it didn't hurt when I woke up and went!) - but extra strength ibuprofen worked just fine along with rest and some heat!

my uro was surprisingly much nicer yesterday (he must have had a bad day the first time we met) and he came in to see me again before I was discharged and said he shouldn't have to see me again, it's a very mild case (yay!) and with the IC diet and potentially meds if need be i should be just fine

I just felt I had to share this b/c I have seen other people's stories and some of them are very scary! but I am one of the fortunate ones who seems to have responded well to it, feel great and didn't need any narcotics to get me through! time will tell if I can be med free (only on ditropan XL 1x/day and pyridium as needed)

I hope some of you can go through this and have such a good result! i will see if this gives me a remission or just much relief and will keep posting as I see how it goes!
thank you all for your experiences and encouragement beforehand!

[SandyRN]

I'm glad you had a successful hydro and urodynamics test. Also glad to hear that your doctor says you have a mild case of IC! I'm sure lots of others on this board will be happy to hear it is possible just to have a mild case. I hope you continue to do well!!

Hugs, Sandy

[humpieumpumkin]

Your telling me Sandy...Im glad you got a diagnosis, and that its only mild. Im sure it still is awful! Hopefully the meds will help you quite a bit! Glad your feeling better!

Erika:hi:

[Braedley]

thanks ladies - after hearing some horrible struggles by other women, I really had to post that sometimes it is mild and manageable...

it's still not fun whenever I have horomone swings or eat something I shouldn't, but I am pretty sure that diet and coping with stress better and massage therapy should be all I need...I will post when I come off my meds after meeting with our family doctor soon - aiming to come off by April 1 roughly as we want to TTC :)

Let others know it's not always the extreme and sometimes the cysto/hydro is worth it - even for the diagnosis - I would do it again in a heartbeat if I had to, it wasn't that bad for me...

Cheers!:hi:

[IC/IBS Hopeful]

Braedly
I just private messaged you not sure how to use this site yet!
Who is your doctor in Dartmouth?
I also go to Dartmouth

[IC/IBS Hopeful]

I am having Cystoscopy with Hydrodistention & Botox on March 2. I want to know what kind of pain I will be in when I wake up. I have a very difficult time to urinate after I get put to sleep. My uro/OBGYN says that I will have a hard time to pee after the Hydrodistention. Is this true and for how long will it last? My Dr. is 2.5hr away and I am so scared I will be sent home with a bladder that doesn't work and no one to help me if something goes wrong.
Any advice??

[Billsbaby]

i am interested to see the response also.i had my first cysto/hydro tuesday,and have not been able to pee right since then,i also have my first uti now too.i have had so many more bladder problems since my hydro ,and i would like to know if its normal,and when this trouble urinating is supposed to stop.

[IC/IBS Hopeful]

I am worried about missing work. I have had 4 surgeries with the interstim. Starting in Jan to July. Lead migrated so did the generator. Now I am going for the botox and Hydrodistention. I plan on just taking that friday off and hope I will be okay on Monday. I don't want to call in sick.

[IC/IBS Hopeful]

I had alot of pain after Urodynamics this is why I am afraid of the hydrodistention and Botox

[Braedley]

Wow, Billsbaby, I had no idea you were still not back on track...
IC/IBS Hopeful, I had no pain after the Urodynamics, just a bit of burning when I tried to pee right after the catheter came out, which is normal...

I took a few days off work (3 off, plus 3 SDO's) just because I didn't know how i'd respond to the whole thing...I am very very lucky (if you want to look at it this way!) as my IC is very mild...my biggest problem is that I have a very small bladder PLUS the IC so it makes for a difficult situation! but manageable...just a pain sometimes...

I was in very little pain, I actually felt incredible when I woke up after the cysto/hydro, but like I'd said in my post, I think they'd frozen me down in that region b/c about 2 hours later when I had to go again, it felt like I was pissing razor blades! But only for a bit - I actually felt it was much easier for me to urinate more fully - it seemed easier, I usually feel like i need to strain to finish, but I'm not sure if they slightly stretched the urethera or something but it seems to be a bit better so far...

My uro said it would be about 10 days of feeling lousy, increased frequency, potential bleeding, pain, etc. but none of it so far - just extreme fatigue and a bit of discomfort with somewhat increased frequency...
Extra strength motrin and lots of fluids and lots and lots of rest and a hot shower helped me immensely...

Everyone will respond differently and everyone's IC responds differently, so I can't really say how long you'd be off work or how much pain you'll be in - it really really varies...

Billsbaby, you were a good example of the opposite of me - 3 hrs to get it(pain) managed after you woke up...I felt great and am very lucky...I just think the small bladder coupled with the IC is my greatest problem, if I had normal bladder capacity I think it may be a different story!

IC/IBS Hopeful I emailed you back - I did get your PM, no worries!

not sure if this helps at all - I'm so sorry many of you have more difficult times with this, I complain sometimes b/c I'm 'down and out' during a flare or something, but really I'm very fortunate...my co workers are all really great, and understand...and I'm not near as bad off as many seem to be...it's difficult and unpredictable sometimes but it's liveable...

[IC/IBS Hopeful]

Thank you for responding. I did reply a pm to you also. I have a horrible time with my bladder when they put me to sleep. When I wake up I can not go on my own. Because my bladder is not that big either I cramp and spasm. Some doctors believe me and others done't. It dosen't matter what the opperation is. It first happen when I had have of my thyroid removed. I couldn't pee for the life of me. They ended up cathing me to get me to go on my own. I did one time then couldn't go again I had to scream at them to cath me again. The last time I was operated on for the interstim. The nurses that were taking care of me on same day had no clue why I was there. I woke up and I had cramps and spasming going on in my bladder. I told them I need to be cathed she looked at me and said I will get you a bed pan. I looked at her and said Cath me. she said I will get you a bed pan. I looked at her and said where is my husband? she said we will get him later. I said you will get him now and call my doctor right now I need to be cathed. She finally comes back with cath in hand. When I was ready to leave I grabed my lower back where the site of the generator was put. she says oh you had back surgery. I told my husband get me out of here now.

I told my dr on Wed about this and I told him I didn't want it to happen agian. I also told him about my fears of not being able to pee on my own. he said he will not send me home if it isn't working.
I am very scared

[sweetangel2080]

glad your case is mild and you are feeling okay

I have a more advanced case of IC, but had my hydro in December and have to say was much more manageable than when I had my first one over a year ago. I was dreading it as have the constant urge and pain so didn't know how I would cope with more.

Luckily, apart from the peeing razor blades feeling and urethral pain for 2/3 days, I was fine. Infact, this time round was pain and relatively symptom free for a few weeks! (still needed meds and painkillers now and then)

I think my coping mechanisms were better this time round - ie bicarb of soda and tons of water to help the razor blade feeling. heat pad for the pain. painkillers as well and this made it all manageable

Infact, had MORE pain with the urodynamics as my urethra was on fire - needed ice for hours.


so just wanted to post to say don't be scared if anyone is reading this and having a hydro soon

[IC/IBS Hopeful]

Thank you Sweetangel the pain in the urethra is one of the things I am scared of. After urodynamics I thought I was going to die. It hurt to pee so bad. I can't emagine them being in there longer than that and doing more things without it hurting. I have 2 more weeks to wait. The more I think about it the more scared I get.