Does anyone have more pain after Cysto/Hydro?

[leelee88]

I was just wondering if anyone out there had pain or more pain after cysto/hydro..Because I never had bladder pain until this proceedure..I was just curious, if I was the only one...

I know a lot of people on this site has gotten relief from them proceedure, I am just not one of them...:confused:

[humpieumpumkin]

There has been no change in pain after my procedure although I didn't have a true hydro. It hasn't gotten any better or any worse.

Erika:hi:

[snslife]

i had a cysto/hydro done a week ago im in alot of pain too. I feel like there is glass in my bladder. I also have the feeling of needing to pee every second of the day. I thought i was just wierd bc everyone else has benefit from it. It has made me worse. Im never doing it again.

[kjd]

Oh god yes I had one last year and ended up with severe pain so decided I would never have another one ever again!
The severe pain lasted 6 months!!!
I really hope that you feel better soon though Rhonda!! :-)
xx

[Billsbaby]

i had mine yesterday,and it was a nightmare.it took 3 hours or so to get my pain under enough control to just go home.then this morning i had to go to my uros because i cannot fully empty my bladder,if it stays like this by tomorrow,they have to cath me.i have never had retention problems before this,and the pain was like a flare multiplied by 100.needless to say,i am in alot of pain and am very upset.i hope this gets better,because i can't take much more.:cussing:

[leelee88]

Well its been 3 months since mine was done, and the pain has never really went away, well I do have good days, but its just odd that I never had any pain before the proceedure and now im having bladder pain..I also was having severe throbbing in my clitoris, but have gotten that under tolerable pain control..

I just cant understand why I am having bladder pain now, when I never did before the hysto/hydro..

[MerryBerryMoose]

I had pain for about a week after the procedure was done. Right after was the worst, it stung (not burned) when I peed. Though it only lasted a few minutes after I would go. Then back to the "normal" burning. It didn't sway me in either direction (better or worse).

The uro. who did mine kinda messed it up, so maybe if was done in a more correct manner, I would have gotten some relief :shrugs:.

[ESKIMO]

MY PAIN WAS THE WORSE AFTER THE CYSTO. I WASN'T GIVEN ANYTHING TO NUMB THE AREA. MY HYDRO THE PAIN WAS WORSE, THEN CAME DOWN TO A 4. SCALE 1-10. MY PAIN HAS NEVER LET UP. I HAVE DAILY PAIN OF A 4. I EXPLAIN AS RIDING YOUR BROTHER'S BIKE & FALLING ONTO THE BAR. BUT EVERYONE IS DIFFERENT WITH IC.:flower:

[smcclafferty]

Yes, I have had my worse symptoms after my cysto/hydro/biopsy on January 5 and now it is February 7, so a little over a month. So hopefully, I will get better soon.

[leelee88]

I was hoping my pain would get better with time to, but it seems to be getting worse..:mad:

[Briza]

Ronda
I had a lot of pain with mine, but also some complications that made for a lot of pain and a longer recovery. I did have bad bladder and pelvic pain before the hydro, but don't think the hydro helped me with any symptoms. Really hard to tell, because of the complications. Hunner's ulcers were burned off, and eventually, some months later, I did not and have never again had the pain that I had before the hydro and for the months afterwards, but I'm supposing that's because the ulcers were removed, not the therapeutic effect of having the bladder stretched. That's just it, maybe, in your case, having the bladder stretched...it is invasive and does require a recovery time for most people. Do you know how much your dr distended your bladder? Mine was distended to 1275 ml. That's got to cause some pain! I'm sorry you're now feeling pain, when you didn't before. I can tell you that even with the complications, I did recover with no permanent damage done. I hope you feel better soon. :grouphug:

[leelee88]

Briza, I had complications to.. My bladder ruptured..

But I was just curious if others hurt more after the proceedure..
Because my doctor said my bladder has healed from the rupture, but I am still in pain..So I was just wondering if it could be from the rupture or the hydro..

[tigger_gal]

I did and a lot of it, but my uro stretched it to 650 cc's and it about killed me.. but not everyone has this out come.. my bladder only holds 200 cc's awake.

[smcclafferty]

I'm going to assume you asked your doctor for these figures about your bladder capacities. I never got mine. I mean, I don't know what it is naturally, and I don't know what they stretched it to with the hydro, but I want to find out if that is my right.

[leelee88]

Smcclafferty,
It is your right to know how much your bladder was stretched, you can even request your file to look at...

[Mommyof2]

Hi there I had a cysto/hydro with a urethral dilation/ bladder biopsy. had mine monday I had the worse pain when I woke up from the surgery they to give me extra iv meds to keep the pain under control they left the cath in till tuesday. tuesday I took the cath out ended up having to go to the uros office with 1200cc bladder retention which was causing me the most pain and he admitted me to the hospital a day for pain control, just got out of the hospital on wednesday and still feeling alot of pain but not as bad as it was monday and tuesday I was told to keep the cath in till my urethra and bladder calm down abit which will probably be monday.even though the cath burns it has made a huge diffrence since most my pain was caused by not being able to empty. my doctor put numbing medicine inside the cath so I dont hurt too bad, but so far so good and as I expected most of my pelvic pains/bladder pains seem to be getting better everyday.
my bladder was only able to be stretched to 550cc and normally can only hold 350cc
good luck and hope you feel better soon.

[ICNDonna]

I usually have some pain for a day or two, but after that I feel better for at least several months. After my first one, I had a problem with retention and had to have a foley for several days, but that hasn't happened again.

Donna

[mary124]

I usually have pain for a day or 2. The last one I had back in October, had problems, won't go into detail, but am much better now. Pretty much pain free still. Hydro's help me for at least 6 months or so. When I need another one all I do is call the doctor and schedule another one. I have had about 10 of them.

[MARIE29]

I have not been diagnosed yet, but I feel worse than I did. I now have this stinging painful feeling in my bladder and it feels a lot worse right before I urinate. I do not have any burning. I have never had bladder pain like this. It has been 3 weeks since my surgery. I am afraid. Will this go away? Does my bladder just need time to heal from the 4 biopsies?

[smcclafferty]

I have not been diagnosed yet, but I feel worse than I did. I now have this stinging painful feeling in my bladder and it feels a lot worse right before I urinate. I do not have any burning. I have never had bladder pain like this. It has been 3 weeks since my surgery. I am afraid. Will this go away? Does my bladder just need time to heal from the 4 biopsies?

I had the same thing happen to me. I had my biopsy done January 5, so now it is six weeks later. I was worse than I am now, but I still have some feelings that I haven't had since the biopsy, that I didn't even have before it. I am also hoping that it goes away soon.

[mela414]

I was worse after the hydro for quite some time. Unfortunately, it did not afford me any help as it does for so many others here. When I had it done with biopsies, many years ago, it made the pain afterwards even worse....and also lasted for quite some time.
Hang in there. It take time to heal from the procedure.

[smcclafferty]

I was worse after the hydro for quite some time. Unfortunately, it did not afford me any help as it does for so many others here. When I had it done with biopsies, many years ago, it made the pain afterwards even worse....and also lasted for quite some time.
Hang in there. It take time to heal from the procedure.


Sorry to ask, I'm just so nervous about this...do you know approximately how long it takes to get back to normal? A few months? Also, did you EVER get better, or did you stay forever worse? Thank you.

[leelee88]

My cysto/hydro was on Nov2nd of 2006.. I am having more bladder pain then before the sugery, I could even eat what I wanted before the surgery, now its limited..I think it really messed me up!... But remb alot of people on the boared swears it has helped them, so dont go by my experience..

[mela414]

It took about a month for me to heal from each of the procedures. I got better slowly. I still have IC pain but it's not the post-surgical pain that I had frmo each of those procedures. For me, it seems that the less I do to my bladder the better off I am. I watch my diet which seems to be key for me. If I stray or eat something accidentally then I immediately go into a flare which will take days to subside. There are certain things that I just don't eat or drink anymore. It's my way of dealing with the IC. I can't take a lot of meds so I find watching my diet to be very helpful.
Give yourself some more time to heal from the procedure and watch your diet so that you don't irritate it more. If you can tolerate meds you should try to find a combination that works for you in dealing with the IC. Hang in there.........you are still healing.

[ads]

I was a temp. worse after cysto, but the hydro was like a bad dream, and I will never do it again. I had to take sick leave after doing it. Of couse the doctor kept telling me, it would take a couple of weeks for the hydro to start making me feel better, but it never did and it took me 3 months to get back to my original level of urgency/pain.

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[luvsterriers]

I've had 3 cysto/hydro. The first time they were going to do it in the office! Well this urologist had no clue about IC. He just thought I had bladder infections. Two doctors later, my current urologist says I have IC. I have had 2 cystos/hydro at the same hospital, and have no complaints. I had mine done in June, and I remember after effects was painful for day. Urinating was really painful the first day, and there was some blood, which my doctor told me its normal. The next day I wasnt in any pain, and my bladder felt normal again. But this good feeling only lasted a week. It may have just lasted a week, but it feels so good to have my bladder stretched. I wish I can go through this procedure more often, but its expensive.

[tbn]

No!! You are not the only one!!! The first time I had a cysto I had never had pain (until then). I also had a cysto a couple of weeks ago (which was my second cysto); I had experienced a different pain than I usually do. The pain I usually have is a stabbing, but the pain I had experienced after my second cysto was different. This pain felt sorer and was more constant. I don't know if that makes sense??? Ha ha. Sorry it is hard to describe. After my second cysto, it also felt like only my right side was hurting. I know I may sound ridiculous, but I think it may have to do with the biopsy my doctor preformed. With my first cysto, I never had a biopsy. My doctor only looked to see whether there were Hunner's ulcers (which there were). What I am thinking about this time around, is that possibly my doctor took a biopsy from my right-side (and the biopsy may have been why the pain was different). I don't know...just one of my crazy theories!!! Keep in mid I began to develop these theories while I was still slightly drugged. Anyways, thanks for listen to my rambling. I hope I helped and I hope I didn't scare you!!!

[Moonheart]

I had two good days afterwards and then I'd say my pain almost doubled. :( I had been on three 30mg MS Contin a day and had to go up to 2 30mg 2x a day and even with that I'd say I'm at about a 3-4 on the pain scale every day. :(
It definitely did not help me.

[Rebeccanne]

I think it seems like I have more pain now after my hydro and cysto. Its been about 3 weeks or so since my procedure, and it seems my pain is almost daily. I know immediatly after I had it done, I was in extreme pain and it took a lot of pain medication to ease the pain. Hopefully never will have to have it done again.....

[smcclafferty]

Yes, it is now almost 7 weeks for me, and I am not back to my "normal" level of symptoms yet. I hope I get back to normal and this is not permanent. I have weird nerve sensations (tingling) and a hot sensation also.

[jessabella]

I had Cysto/Hydro done on January 04/2007 and I believe that my pain have worsen since the procedure.

[bbtex]

I had a cysto/hydro on January 11, 2007, and this brought no relief of symptoms. In fact I started having more pain after the procedure. I felt more pain after this procedure than my prior surgery in April '06 to remove a urethral diverticulum. I have been getting Elmiron bladder treatments for 6 weeks now. Today I am going to ask my uro when I start my oral Elmiron. Hope you get some relief.:)

[milissa]

I had it done a year and half ago, It hurt incrediable bad afterwards maybe the first two weeks, but then eventually the pain subsided. I found that taking pain medicine like lortab irritated my bladder. It has been two years since I have I have been diagonoised with this and I was doing really well, but then I was put back into another stressful sitution and I am having flareups extreamly bad.

[alianne]

with my last hydro I actually had a respiratory arrest because they had to give me so much pain medication when I was coming out of the epidural (they do epidurals on me because I can't have any anesthetic very well) ... they actually had to do mouth to mouth on me because my lungs just fell asleep basically after I passed out from the pain. So - YES these can be more pain than they are worth! If I ever have another I might have to have a longer-acting epidural or something. My bladder can never work afterwards and I am always hospitalized overnight to leave the cath in. At first i thought the hydros helped, but I am not sure it's worth it anymore!

[smcclafferty]

I had Cysto/Hydro done on January 04/2007 and I believe that my pain have worsen since the procedure.

Jessabella, you had the procedure done one day before me...has your pain/urgency/etc. gotten any better yet? Mine is still worse, I was wondering how long this takes to feel better...thank you.

[jessabella]

no mine haven't stop,sometimes I believe the pain is even worse. My urologist put me on once a day Ditropan and 3times a day Elmiron.So fair no change.

[cass2376]

My pain got worse when I had it done too. The pain was so bad they started me on Demerol, that did not work, then Morphine, helped a little, finally, Dauladid, but my pain never really got better, all these meds just took the edge off for a while. They keept me for 6hours after the hydro just for pain control alone. I was told I would stay for an hour till I woke up and peed then go home. Another issue was trying to pee in a bed pan....wow, that was fun....NOT!!! When I got home the pain was terriable and I could not pee for almost 8 hours. I was misserable!! I was told to keep taking my same pain meds I take everyday. I take Methadone 20mgs 3X a day and at the time, percocet 10mgs every 4 hrs as needed for breakthrough pain. It did not help my pain at all and I suffered for weeks. I think the pain meds did not work because I was taking them regularly for my IC and Fibro pain already and it could not possibly help this new pain as well. Needless to say, I will NEVER EVER have another one done. I also made me go right into a flare up that lasted a week. Now remember, this was just me, don't be afraid to try it if it is suggested by your doc. because this procedure has helped many others so don't listen just to my story. This could be a miracle treatment for you as it is for many others. My story was pretty rare I am sure, it just did not work for me. Good luck all you out there. I hope you all are doing o.k.
Take care and God Bless, Cassandra:angel:

[leelee88]

Well its been 4 months now and my pain is getting worse!!..

[Moonheart]

Well its been 4 months now and my pain is getting worse!!..
Me too, as well as my incontinence. It's terrible. It's bordering on unbearable even with 120mg of Morphine a day. :(

I had my first Elmiron instillation today and instantly became totally incontinent, ended up with massive back spasms, a numb leg, and pain all through my urethra and bladder. :confused: :help: :mad: :mad:

[smcclafferty]

Oh my God, now I'm really scared. My doctor said I shouldn't still be in pain/discomfort, and it has been 2 months for me as of Today...

[leelee88]

Oh no moonheart..I hate that the instills did not help.. My doctor will not give them to me, but after hearing that from you I dont think I wont them.. he will not even give me anything for pain...I am just so mad, because I was not in any pain before the hydro... I was just peeing alot...so he wanted to just check and see if it was IC.. well he got what he wanted a dg and i got more pain:mad:

[Moonheart]

Oh no moonheart..I hate that the instills did not help.. My doctor will not give them to me, but after hearing that from you I dont think I wont them.. he will not even give me anything for pain...I am just so mad, because I was not in any pain before the hydro... I was just peeing alot...so he wanted to just check and see if it was IC.. well he got what he wanted a dg and i got more pain:mad:
That's somewhat what happened to me. I did have alot of pain and was on pain meds before the hydro, but I could function. Now I can't lift a gallon of milk. I'm bordering non-functional and it scares me to death.

I hate that I've scared you guys now though. I'm terribly sorry. That wasn't my intention. :( :help:

[leelee88]

I understand moonheart.. But what you stated was a fact..So I think its good for people to know the pros and cons of any surgery, so they can make their own mind up..I just wish I would have known before I had mine done..

My bladder actually ruptured when they put that solution in it, which they called a cocktail of meds.. I was in severe pain after that...Then it got a little better and now im back having shooting pains in my bladder..

Some people do get great relief..I guees it just affects all of us differantly, just like meds do..
But I will never get another one..

[GoldSeraph]

I can really sympathize about your pain. After only having a Urodynamics evaluation two days ago....I can't tell you how much pain I had afterwards! I have consist pain 24/7 that is kept under some control with Tramadol 100 mgs, 2x da. Without it, I am in horrible pain and have severe chills. I can't imagine what kind of lasting pain that I might have with the proceedure you endured. I don't think I can take much more pain and I don't want to add more pills, I want to get rid of the tramadol one day.

I hope it starts to ease up for you soon. *hugs*

[smcclafferty]

For the people who HAVE GOTTEN WORSE after their cysto/hydro/biopsy, or who have only started to get pain after this procedure- I just wanted to know if you have gotten any better yet since your procedure? I'm still not well after 10 weeks, and I never had pain until after the procedure. Thank you.

[Moonheart]

For the people who HAVE GOTTEN WORSE after their cysto/hydro/biopsy, or who have only started to get pain after this procedure- I just wanted to know if you have gotten any better yet since your procedure? I'm still not well after 10 weeks, and I never had pain until after the procedure. Thank you.
No improvement yet and it's been about 12 weeks or so? I'm not sure of the dates.

I started getting periodic FULL incontinence as well. No warning. :( :help: