Pain 2 weeks after hydro

[QueenBee]

I had cysto/hydro done two weeks ago and am in moderate pain. Before procedure, my only symptoms were severe frequency and urgency (18 - 26 times a day), but had no real pain to speak of. Ever since the procedure I have had pain in my bladder and urethra and my frequency/urgency has not gotten any better. In fact, I feel like I am going more. Has anyone had this experience and if so, did it get better? HELP!

[chernobyl]

I had mine done two weeks ago on Friday, my symptoms are much worse too, the urgency is awful and so much pain I feel like I'm losing my mind! I went back on ditropan a week ago but that doesn't even seem to help now. Others have said it can take weeks so I hope against hope that is the case for us both and that it will settle down. I wish I had never had it done, I had my symptoms to a manageable level before the procedure and now I'm finding it hard to function at all. I have an appointment to see my urologist on Monday so I hope he can shed some light on why this is happening and what can be done about it. I was so convinced I must have had a UTI I went to the ER last week and to see my local doctor this morning. both times I've been told there is no bacteria. I feel for you so much! Do you have any other conditions that might make things worse? I have fibrmyalgia and thought maybe because my pain threshold is lower than normal that it might be the reason I am feeling so bad.

Sorry this wasn't good news, maybe some else can give us both a better idea about recovery time :toilet:

[ICNDonna]

Recovery time can vary significantly between patients. Just remember that you have had surgery and it will take some time to recover. If you've had an increase in pain, you should be checked to be certain you don't have an infection.

Some people have reported here that it took up to six or eight weeks for full recovery. For me, it's usually around a week, but I do need to take it easy for several weeks.

Donna

[QueenBee]

Thanks for the feedback. I'm so sorry you are going through that too. I was tested for a bladder infection, but they said I didn't have one. I wonder if you can have a low grade UTI and have it not be detected. I, too, am hoping that it is just taking us longer to recover than most. I hope that Donna is right.

I was diagnosed with IBS about 8 years ago, but haven't had any symptoms for several years.

Did the Dirtropan help you before the procedure? I tried that and Detrol, but niether helped. Let me know if you get better. I will keep my fingers crossed!

[chernobyl]

Hi Queen Bee

the Ditropan was helping a bit before the procedure, it was a very up and down thing trying to get the dosage right but I was starting to sleep through most of the night 5-6 hours before the hydro and excuse the bluntness, but was even able to have reasonable sex. Now the very thought of sex makes me want to hide under the bed! I am just hoping I'll get back to the level I was in the two weeks leading up to the hydro because I was starting to figure out a little control. Please keep me posted as to how you are doing. I've got my fingers and toes crossed for you, I'd keep my legs crossed too but it hurts my bladder ;)

[grace 2]

Hi, I had a cysto-hydro done in March 2003 and it just made my symptoms worse too. It took me 6-8 weeks to get back to where I was to begin with. It happened gradually. After about 3 weeks I was a lot better. Elmiron has helped me the most at this point. Hugs and prayers! Grace

[gloriabono68]

I had the hydro done and it was a good six weeks or so before it helped me any at all , during that time though i thought i was going to die.......it was horrible and it seemed to help me for a while........the past three days have been the flare from the devil and i dont know what set it off but i cannot seem to get it to stop.......why is it that i always for get how bad flares are until ii have one........geez
kristi

[QueenBee]

Thanks for the feedback. I am in the process of trying to find a doctor that knows anything about IC. Mine doesn't seem to. I am in the process of trying to get pregnant and want to avoid any medication right now. Great timing, huh. I wonder why some of us take so long to recover from the pain of having the procedure. My doctor seemed bewildered when I told him I was in pain. I am hoping that the pain will begin to decrease this week. I can't imagine this lasting 6-8 weeks! I will post again soon with an update.

[gloriabono68]

Queen bee........
I know what u mean.........it will get better though and the pain will lesson but it will take a while.....i think its because we have IC and its just a longer process to heal when our bladders are messed with in any way.......I am in bladder hades right now but i had a good two or three months relief from it.........
hang in there , and some medicines are ok to take while pregnant........In fact i got pregnant and iddnt even know i could ....and i was taking about ten or eleven different prescriptions at the time.......and even during my pregnancy i took ditrapan xl and on and off pyridium..........but you would have to discuss all that with your doctor of course......i didnt take it cause i wanted too i just had too......i skipped when i could but it wasnt often.......
take care
kristi

[lalarainbow]

Hi
I was one that the cysto/hydro made me worse but Elmiron helped me get better. Hope you feel better soon.
~~Pam~~

[chernobyl]

I guess I'll try to view it as positive that you guys finally got some relief but 6-8 weeks more of of this is just too awful to think about! I hate to sound like a whiner but I really wish I had never had it done. It's not something I would recommend. Even though I know many have gotten relief from the procedure, I'm not sure I would have taken the risk had I known I would feel this awful. I'm going to ask my doctor about Elmiron on Monday, I hope that it's available in Australia as so many of the treatments, even the simple ones like D-mannose and Prelief are not available here. It's incredibly frustrating :headbang:

I think my employers are wearing thin on patience, it's hard to be a receptionist when you need to run to the toilet all the time. Plus I have had a lot of time off because I have felt too sick or in too much pain to do anything.

[chernobyl]

Oh, forgot to say good luck to Queen Bee, there are a number of pregnant people on the forum who can probably give you some great advice! :)

[liznazz]

Please check for a UTI. I had one for 5 weeks after my hydro. I assumed that because I was given an antibiotic prior to the procedure, I couldn't get one. I was wrong! I had one for weeks till I finally got rid of it and felt Much, much better. good luck! liz

[chernobyl]

Thanks Liz, I've already been checked twice in the last two weeks and both tests have come up negative for bacteria. I was actually hoping that's what it was because I could have at least taken antibiotics to get rid of it. I guess I'll just have to wait it out and hope for the best.

[chernobyl]

Hi Queen Bee

Are you feeling any better?

[QueenBee]

Hi Chernobyl. Sorry I haven't been on in a while. I have, thank god, improved a lot. I have mild pain in my bladder and urethra still, but it comes and goes now. It's been over three weeks now and I am still furious that I am not 100%, but am holding out hope that with another week or two, I will be completely recovered. My main concern now is wondering if the pain will come back. Seeing as I never had pain before, I am extremely afraid of it returning. Luckily, I have been referred to Dr. Christopher Payne at Stanford, so I am hoping that will help!

How about you? Let me know your update when you can. I hope you are in the same boat. :)

Queen Bee

[chernobyl]

It's three weeks today since the op and my symptoms are improving a bit, my bladder is still painful all the time but not as intense. I'm not sure if it's a coincidence and it's just getting slowly better after the procedure but I've been on amitriptyline for 4 days now so it may be the meds helping. hopefully it will keep improving. thanks for letting me know how you are going, I hope you keep seeing improvement. :)

[QueenBee]

Is the med you are on an antibiotic? Just curious - maybe I can ask my Dr. about it. :)

[lledoux_2000]

That is exactly me, too! I was also put through those "tests" where they put the different liquids on your bladder and ask you on a scale of 1 to 10 how bad it hurts. I should have been asked whether or not I wanted those tests - then the uro came in and my bladder showed all the classic signs of IC anyway - I realized I was put through those tests needlessly. I keep reading things that ask "Is the scope really necessary when all the symptoms are there?" and I also keep reading that the scope shouldn't be done when the patient is awake. It was a very traumatic experience for me. After all the infertility treatments I've been through, I didn't think there could be anything worse... I didn't know I had been doing everything wrong and my bladder was just plain mad after all that cranberry juice, etc... I started having pain right after my scope. Now that it's been about a month since my last DSMO, my bladder is finally starting to calm down. Diet is the #1 course of treatment for me, though!

[chernobyl]

Hi Queen Bee, it's not an antibiotic, it's a very low dose antidepressant. The older style tricyclic antidepressants have affect pain receptors, the dosages are tiny compared to what you would take to treat depression and it certainly doesn't mean that your doctor thinks it's all in your head. They've been using them to treat chronic pain for a long time. Only trouble is they make most people feel drowsy (good if you want help going to sleep). I unfortunately am one of the very few that suffers insomnia with it but I'm hoping that my body will balance out soon enough. My pain levels are noticeably lower now. Not sure if it's the drug but whatever it is I'm glad I'm not in screaming agony anymore. I hope it just gets lower every day and I hope you're feeling much better.

[Dianne]

Well that gives me hope. It'll be 4 weeks tomorrow since my hydro. I haven't gotten any relief and if anything I'm worse. But I had to try it.

[chernobyl]

Well after all that I may not be able to continue taking the amitriptyline. Although I have seen a reduction in my pain levels the insomnia it is causing is not settling down. It looks like I may be one of the small percentage of people that cannot use it, I am a bit non-functioning at the moment from sleep deprivation :loco: (two weeks only getting maybe 2 hours sleep a night in total makes you a bit of a basket case, I know why they use it as a method of torture!) I'm calling my uro today so I'll keep you all posted.

[QueenBee]

Wow. I am so sorry about the antidepressents! It stinks that you found something to help and it has such a horrible side effect. I am going to ask my Dr. if I can take it while trying to get pregnant.

I SWEAR I WILL NEVER HAVE ANOTHER HYDRO AGAIN. Like you, my pain has subsided a lot, but I still have small irritation in my urethra and bladder that comes around every once in a while. I hope, for our sake, that it goes away for good!

If anyone out there is considering a hydro, please be aware that you can potentially be in pain for a while.

[chernobyl]

I'm with Queen Bee, I will never ever have another hydro, my pain has reduced a bit but it's still worse than before, the only thing that it seems to have helped is the frequency which is less than it was before the hydro. The pain has been horrible. I'm still hoping that like some of the others it is just taking a bit more time but will settle down. But to me the hydro was just not worth the pain.

[bunnykinb]

I will be getting my second on 2/6/06. I had requested it because I wanted to see if my bladder was worse since I was still having a lot of burning and pelvic pain. Since requesting it, my bladder has been great for 3 weeks. But, if I cancel the hydro, my pain will probably come back. The only thing different I am doing is eating more. Hmm.

[chernobyl]

The funniest thing has happened. My doctor told me to stop taking the amitriptyline as the side effects were unmanagable (insomnia). I was so frustrated after being awake every night for two weeks that I decided to bomb myself out for a couple of nights on clonazepam - not something you would want to do frequently as it is very addictive and you feel like the walking dead the next day - anyway, I have caught up on some well needed sleep, am feeling incredibly tired during the day but...my pain levels have dropped dramatically! Next time I see my doctor I'll have to ask about this. Pity I couldn't take it all the time but as I said, it's very addictive and you build a tolerance for it very very quickly meaning you need more and more for it to be effective. It caused me major problems a few years ago so I wouldn't go there again. I had a couple left from that time and just thought two nights catch up sleep will help me get back on track. My recent insomnia has caused more weight loss and a face full of pimples! :bonk:

[sami4]

Problem is with the hydro cysto thing most urologists wont treat you if you dont have one. I have not had one due to fear of more pain and suffering or possible nerve damage. I had a ultrasound once where you drink water and peed down my leg for three months after that, and had bladder pressure. So, I am very afraid of a cysto with distention just so some uro can say,"yep, you have it." Why they just dont treat it and see what happens, they do that anyway.
Sammie

[grace 2]

My doctor was pretty good about that as he tested me with the potassium solution in my bladder for a diagnosis.That's what I'd recommend to anyone starting out on this journey. He started me on Elmiron long before the cysto/hydro. I chose to do the cysto/hydro( with his urging) in hopes of it helping with pain, which it didn't for me but it did tell them how much my bladder could hold and that I didn't have any ulcers. A lot of pain to go through for that! Hope you all find good doctors and have pain free days ahead! Grace