PETRIFIED of having cysto/hydro

[verdicries]

My dad & husband want me to have it done...but I pretty much have my dx W/O the cysto/hydro. I really don't think I can tolerate the pain it would cause - and they don't seem to understand! A simple catheterization w/a PEDIATRIC cath at the ER left me feeling traumatized for days...the cysto/hydro could put me over the edge!

On the other hand, I don't want the potassium sensitivity test either. My urologist (who is pretty much a waste right now) is confident it's IC (so am I). I CANNOT handle the cysto/hydro test, even if it DID bring me a few months of relief.

Sorry, I needed to vent. Just THINKING about the test scares me. :help: If I HAVE to have one done...any suggestions?

Thanks.

[patricia1]

:pray: I understand they can seem barbic and awful. But really they can help. The cysto/hydro can actually not only diagnose IC, but help with the symptoms and put you into a remission. When I had mine if I had a cath it was done in the OR and I never came home with one, and dont even rememeber one. That is a postive side. Now for the other I am one that have not benefitted from them. I have had 3 and none helped with my symptoms. I was done with the first one several days and unfort. with the last one I ended up with a really bad UTI. NOT that this will happen to you.

The Postassium test in it self is not all bad. It is done in office, but with this one you have a cath inserted to instill the meds into the bladder. The inject different solutions in to see if you have a reaction to the potassium or not. And if you have a postive reaction they remove it right away and instill some numbing med to help with the pain. For me it only hurt when the potassium going in and once the other med was in it did not bother me any more. I did not flare from it or anything.

We are all different. And it is your choice to choose what to do with your body. Now days doctors are diagnose IC with symptoms alone and not doing either of the above.

[verdicries]

Thanks. The more I read, the more I think I'm sticking to my dx W/O cysto/hydro. I have enuf retention issues, don't need any more.

Sigh.

[Trishann]

When I had just the cysto in the office it was bad for me. But when I had the cysto/hydro under anthes. as an outpatient I still hurt but somewhat under control because they gave me pain medicine through my IV and had pain medicine already at home. You can ask your doctor about how he/she goes about it. It might ease some of your fears.

Also some patient do very well with it. You might want to consider what to do because the cysto/hydro can show if you have ulcers, pinpoint bleeding, and it can tell you if your bladder is capable to hold much urine. This is something that you have to decide and I can understand your fears of it.

Sending hugs, Trishann

[SandyRN]

I know you're afraid. I'm a nurse, and I was TERRIFIED. I really did not know what to expect, but now that I've had it done I would do it again just to get the clear, and accurate diagnosis that it gave me. You need to have your doctor look in there to rule out bladder cancer. I'm not saying this to scare you, but it's always better to be safe than sorry.

It took me a few weeks to recover, and I'm not going to lie to you, I was sore all over and needed extra pain meds, but like I said, I'd do it all over again if I had to just for the peace of mind that there is no cancer in there.

Hopefully Donna will chime in here and tell you about her experiences. She has them done regularly and gets a lot of relief from the hydros.

Talk with your doctor, make certain you will have pain meds if you aren't already on them for after the procedure. You might not even need them.
They put you to sleep for the procedure, you will not be awake and you won't remember a thing. They will also give you a sedative before they take you back to the OR.

My hydro lasted less than 20 minutes.

I really wouldn't lie to you about the possible benefits from having it done.

[humpieumpumkin]

I agree with Sandy...

The piece of mind in my case made up for the pain...I knew I wasn't crazy after all. Yes We do need Donna, don't we?!:angel: She, like Sandy mentioned is one who truly benefits from the procedure. The only way to know if you would too is to have it done! Dont be scared!

Erika

[HGC]

I have had 11 hydros in the past 15 years and they have been a lifesaver for me. While it takes me about a week to recover it is well worth it. I agree with Sandy that it is important to rule out bladder cancer as well. Everyone is different and I believe you shouldn't make a decision based on other people's experiences. Not only will you get a diagnosis with a cysto/hydro you might be one of the lucky ones like myself who gets relief.

[dmarie]

They tried to do the potassium test on me in the office and I could not withstand the pediatric catheter. My doctor said that I needed the Hydro. I bawled at that moment up until the moment they put me under for the hydro. My uro was fantastic about this. She put Tramadol in my IV while I was under anesthesia and the second I opened my eyes they stuck a belladonna and opium suppository in my rectum. I was also given 200mg of pyridium. I was terrified to pee, but it did not even burn. I went home with pyridium and suppositories. I was sore and uncomfortable for a few days but it was worth it....I knew exactly what shape my bladder was in. I had a moderate to severe case and my doctor was then able to treat me aggressively. I also was happy to know that I did not have any ulcers that would need attention!

Dawn

[SharonA]

Of course you are frightened. That is the most normal thing to be feeling. I know I was so scared. Just the thought of it made me nauseous. Thank God that from the time the uro said he wanted to do it to the time it was done was only a couple of days.

Oh you should have seen me the day I went in to have it done. I was such a mess. After I was admitted and had the gown on, I became a complete lunatic. I kept telling my husband that I loved him and no matter what happened to me that he was to remember that. The nurse came in to put in the IV to be used during the procedure and asked if I was nervous. Whatever gave you that idea, I thought. Was it the fact that you could see my hands shaking and the death grip that I had on the sides of the gurney? Or was the permanent indention of my fingers on my husband's hand? She then told me that she was going to give me something to make me relax. Boy oh boy, did it ever. :woohoo:

The procedure (which only took about 20 minutes) was done while I was completely asleep. When I woke up in recovery, I did have a catheter that had been inserted once I was out but they removed it right after I woke up. I was given pain meds right after I was awake plus prescriptions for more pain meds and an antibiotic and was released to go home and rest. I never had to take the pain med but I did take the antibiotic. The first time I urinated, it saw a little blood on the tissue and felt a burning, both of which I was told to expect. I rested that afternoon and got up, made myself a bowl of oatmeal and watched TV with my husband. The next day, I was able to do my usual daily stuff without discomfort.

I am not going to tell you not to worry about this procedure should you decide to go ahead and have it done because I know you will still worry. We all do. I hope that what I have told you about my experience will lessen that worry. I will agree with Sandy, though. I am glad I had it done because it gave me a "for sure" diagnosis which, in turn, started me on the road to recovery and a more normal life than spending every day in pain.

[leelee88]

I know you are affraid. And I am going to be honest with you.. I wish I had never had it done.. My bladder ruptured after the hydro, this is very very rare, but if I would have went with my better judgement I would not of had it done.. I even had went and got a second opinion..

So you do what you feel comfortable with, its your body! I would have done the potassium sensitive test if my uro would have ask me, then I would not of went through all the agony of the cysto/hydro..
Just remb, This is just my opinion:smile tee

God bless you and good luck with whatever decision you make..

[SandyRN]

I just read a medical journal report that said 89% of the patients who had hydrodistentions done got relief...24% of this group only had short lived relief and the other % had relief for an average of almost 5 months.

I really hate it that Ronda's bladder ruptured, but it is SO, SO very rare. I still feel there was malpractice in this case. Get a 2nd, or 3rd opinion and if you still don't feel comfortable then don't do it, but make sure you know all your options and are willing to risk an undiagnosed bladder cancer. Bladder cancer isn't all that common either, but if there's any risk of cancer that I can prevent then I'm going to do it...i.e a colonoscopy, upper scope, pap smear, etc.

Whatever you do we'll respect your opinion.

[kjd]

I know you are terrified and I was too! I am the biggest wimp in the world ever.
Now I am not going to lie to you...........I wish I had never had it done as I was left with more pain for 8 months afterwards and felt traumatised!!!

Now if you are happy its IC from your symptoms etc and so is your urologist then maybe this is something you dont need to do? At the end of the day there are risks and it didnt help me at all, but this is just my opinion!!

some people have had some good results from the Cysto/hydro and have had lots and lots as it eases their pain so you never know it could help you!

Either way its your body and your decision and I wish you luck

[mary124]

I've had about 8 hydros done in about 5 years. (average about 2 a year). They help me for about 6 months or so. I usually have them done on a Thursday so that I can recover and rest on the weekend and return to work the next Monday. It takes about 20 minutes or so to do them. In fact, I'm in the middle of trying to schedule another one. (I've learned the hard way, don't wait till I'm so bad off that I can't take it anymore!!)
Either way, whatever you do, good luck.

[Braedley]

you're definitely not alone - I was adamant that I would not have those done, but upon doing some talking with the urology clinic staff & our family doctor, they told me what to expect and that it's done for other reasons too (ie: ruling out other problems)...

honestly, it was scary going in, but the people I had were very kind and patient...and when I woke up after it all, I felt incredible, like I'd had the best rest ever!...and it didn't hurt to pee at first (think they numbed the whole area up there)...it stung like crazy for the first afternoon, but motrin helped, along with heat and lots of fluids...I know it's not always that easy for everyone, but don't let the negative stories you hear deter you from it because that's what happened to my husband & I - until we spoke to the health care professionals attending to me; the internet can be your best resource and also your worst enemy sometimes because everyone's experience is very different...

think it through and talk more with your doctor(s) before you decide - I am VERY glad I did it; it didn't really give me tons of relief, but calmed my horomonal flare ups some and gave me peace of mind knowing it wasn't cancer or something else in there! :)

good luck in whatever you choose to do!

[leelee88]

Oh I agree with you Sandy... I know there is so many people who have had relief from the hydro/cysto... My case was very rare, but all surgeries can have there risk..Like I said I had a even gotten a second opinion,and that dr said the same thing, so it is highly recommend by the medical field..

[GriffsMommy]

I haven't had a cysto/hydro done yet so I can't speak about what it will feel like. However, my uro told me that if I don't feel better after trying an antibiotic for 6 weeks to rule out a bacterial cause that he wants to do a cysto/hydro. I have read all of the posts on here about it and some of them scare me to death. BUT, I trust my uro, he deals with a lot of IC patients and I want him to make sure it really is IC and not something else. I really think it is IC and if it is I also want him to be able to see how bad it is so he can figure out the best treatment for me. I am not looking forward to having it done but if it lets us rule everything else out and see how bad the IC is then I'm all in.

[gailw]

Hi Everyone, im back, I thought my I.C. was in remission, and for 3wks it was. To me that was remission.
My family Dr. sent me to a new Uro at Sunnybrook Hos. in Tor. Can. He put me on elmiron, and wants me to have a Hydrodistention. Im also scared. I dont know whether to have this or not. My current Uro, Dr. Woods advised against it. ( he's been a very good Uro to me) He said the pain would be a lot worst afterwords, and that it would last a long time, and might do me more harm than good. Also being an nurse myself, I think I will take a pass on this. Why put my bladder into anymore stress than it already is.
I wanted also to ask if anybody has heard of Elmiron. This Uro specialist put me on this just today. Please has anybody had any reactions to it? does it help? im almost ready to try anything, but Im scared of the side effects.

[gailw]

I Realize that on these cold days that I cant have coffee, or tea, unless it's herbal, and Im getting so sick of herbal tea. But what doesnt bother I.C. and is a warm relaxing comfort drink is Tim Hortons Smoothies. They are great and not caffeen. I drink the caramal. It feels so good to go out and instead of drinking milk, or asking for decaf. coffee, (Which Im not to keen on.) I feel like im a normal person again. My best friend told me about it, and being reluctant I tried it, and no ill effects.
I had an M.R.I. done last week. And of course nothing showed up. Does anybody have lower left side pain with this aswell?

rx: cystostat installations 1 a mth.
peridian, when ever the pain gets untollerable and the urgency.
oxytrol, patches 2x per wk
Elmiron, 3x a day
Percocet, as
needed, and Dilaudid,5mg as needed.
I think that's enough medication, but Im wondering about the Elmiron? anybody have any feedback on this. Is there anything I can try. Im on all ths medication and so far none of it is working, but I just started the Elmiron Yesterday. The new Uro. apparently the top one in Canada, Dr. Hershorn, anyone heard of him. any feedback. My current Uro, who I still see is Dr. Woods, a good Uro. But my family Dr. said he didnt see any improvment in me so sent me to this one, who wants a hydrodistention done and put me on Elmiron. If im rambling, It's only because im in so much pain and waiting for the pair meds to kick in. Im so tired of this, sooooo tired. I just wish God could please make it go away.

[RobinD]

I have been taking Elmiron since Nov and have had no side effects. ALWAYS take it on an empty stomach as it is prescribed, so it can do the most good for your bladder. Whether it helps me or not I am not sure. It can take 6-12 months to know but I do feel better. Not sure if that is due to the Elmiron or my diet or the bladder instills I am getting. But I am not changing anything I am doing since I feel better. I think it is worth trying the Elmiron

[ICNDonna]

I was diagnosed with interstitial cystitis in 1975 by hydrodistention. I also had biopsies at the same time. After that first hydro, I went almost two years almost symptom free. My uro told me following the first one that if it helped, we could do it again when symptoms returned.

I have now had forty hydrodistentions and each and every one has worked very well. I go anywhere from six months to just under two years between procedures, with the average about a year. It has now been just over a year since my last one.

I do have to confess that each and every time, I get nervous beforehand --- I think I'd worry about my sanity if I didn't --- but when I arrive at the hospital, I am given a relaxant so I calm down very quickly. The absolute worst part is the first time I urinate afterwards --- it feels like I'm turning inside out. But I have learned that feeling is temporary and I know I'll feel good for months afterwards.

After the first one, I did have a retention problem for a few days, but since then I haven't had a problem. If that concerns you, you might ask your urologist if he will prescribe one of the hytrin-like drugs for you just in case.

In my years with IC, and years on the internet researching, I have come across only two instances where anyone's bladder has actually ruptured during this procedure --- out of thousands who have had it.

Of course it's your decision as to whether you will do this. It's your body. But I did want to share my own experiences.

Donna

[verdicries]

After the first one, I did have a retention problem for a few days, but since then I haven't had a problem. If that concerns you, you might ask your urologist if he will prescribe one of the hytrin-like drugs for you just in case.
Donna

Donna (and/or others),
What is a hytrin drug?
Thanks.

[ICNDonna]

Hytrin is one of the medications usually given to men when they have difficulty urinating due to enlarged prostate. There are several: flomax and cardura immediately come to mind. They are drugs that help relax the muscles around the urethra to make it easier to urinate. I mentioned hytrin because it's the one my husband takes.

Donna

[verdicries]

Aaah, okay. Thanks. I'm still not sold on having a cysto/hydro...but I'm thinking about it.

[gailw]

Ok so im a chicken, probably the biggest chicken here. Im just so scared. Ive heard so many horror stories. But I do have to trust my Uro. Last night was the night from hell. As you can see from me letters, I was up all night last night. And still have not had any sleep.
One thing the Uro did ask me ws "does stress affect you and "does the pain start when your stressed."I guess I never noticed before until last night, when I had to take a Nursing exam. But yes I guess it does. And sometimes there is bladder leakage as well. And of course im sure 80% of us have had endometriosis. Well, bladder or no bladder. I will sleep good tonight.
I dont know what I would do with out your girls. At least I know im not the only one. :cat: :angel:

[lnseagraves]

Hey,

Its been a few years since I was both on Elmiron and had my diagnostic cysto/hydro. I would encourage you both to consider both of them. I was on Elmiron for 9 mos. I hated having to take it 3xs a day. I hated the periodic renal scans my uro made me do to monitor the kidneys, and I hated worrying about the side effects like you are doing. That said, I DID feel marked improvement to the point I felt it was controllable through diet. Needless to say, I have been diagnosed now for 2 1/2 years and am only NOW having major problems again. I truly feel that my limited amount of time on Elmiron really helped my bladder. I am asking to be put back on it again. Hopefully, for no longer than 9 mos. again. I don't like taking ANY drug long term.

As for the cystro/hydro, I had mine done under anesthesia at the hospital. They REALLY drugged me afterwards too. I was TOTALLY wiped out for days due to the medication, and I was sore for about 2 weeks after my pain meds ran out, but I don't regret doing it for a minute. The doctor then could diagnose me for sure. I knew I didn't have cancer. And, I knew how BAD my IC really was comparatively. Knowing that I only had mild/moderate versus severe was actually CONSOLING. Also, finally being diagnosed and not hypothesizing was a relief. I had started to wonder if it was all in my head, and now I had PROOF that it wasnt.

It was the potassium test that scared me. Youre awake for that one. I wanted to be totally under.

Finally, remember that NOONE knows your own body like you do. If you truly don't think you should do something, DONT.

[patricia1]

I was prescribed Flomax when I was trying to pass my kidney stone. When I went to get it filled it was not covered, but when checking my book it said it was and I told the pharm this, but it was only covered for men and 5 pills cost me like $30.00. I did not realize at the time it was for men and prostrate problems. But it is rather expensive.

GailW you are not a chicken. Having the cysto/hydros done can be scary, but also for some it is a blessing in disguise. When having them done for several days afterwards you do hurt. And you can have pain, but after that for some they go into remission and for them the intial pain and discomfort is worth it. For me though I am one who has never benefitted from them and in fact the last one was worse for me. So dont feel like you are a chicken or come down on your self because you are scared of them.

As far as Elmiron is concerned. This is standard drug use in fighting IC. It is prescribed because right now it is the only drug out there that helps rebuild the bladder lining. Only thing about it is that it can take anywhere from several months to a year to see the full benefits of it. It is not a overnight help. Just think it can take months or longer for IC to mess up the lining and it is gonna take awhile to let the medicine work on it. Also it can have some side effects ranging from those with stomache ulcer need to be watchful as it can mess up the stomache. Some people can not take the medicine unless it is taken out of the capsule, because the capsule can mess up your stomache and a few people experience hair loss. Should you take it and experience this once you have stopped the drug the hair loss stops.

[CherylSLP]

I was knocked out for the hydrodistension, I have no idea why that would not be done?? I had a big sore day that night and the next day, but it was nothing compared to the pain I had been in beforehand. It did help abate my symptoms (to be honest they have never come back as bad as they were when they started -but maybe that is the Elmiron too). I also like the knowledge of a real life test which very few people will argue with. Just my two cents.

[Tinkerbell23]

I'll be honest. If you can avoid it you should. I wish i would have. it made me worse. i was out for two weeks, caught an infection. the pain is terrible. I am not trying to scare you, i just wish someone would have told me. if i could go back and do it all over again i wouldnt do it. i went to my OBGYN because my PCP said i didnt have a bladder/kidney infection and i was peeing blood so i went to my OBGYN who ran some bloods and urine and felt my bladder and told me it was IC gave me a script for elmiron and book and that was it. i kept reading that visible blood was uncommon so i went to a urologist who "wasnt convinced" it was IC and since i have a family history of renal cancer he wanted a biopsy, hydro, and cystoscopy done. maybe it was the biopsy that messed me up, i dont know. he also tore my ureathra and had to stitch that up and said it was already torn. HOW? and thats why i was peeing blood. well its a year later and i still pee blood and he wants me to go for another hydro to see if it helps, no thanks... I hope i didn't make you feel worse :( Good luck with it all.

[gailw]

I'll be honest. If you can avoid it you should. I wish i would have. it made me worse. i was out for two weeks, caught an infection. the pain is terrible. I am not trying to scare you, i just wish someone would have told me. if i could go back and do it all over again i wouldnt do it. i went to my OBGYN because my PCP said i didnt have a bladder/kidney infection and i was peeing blood so i went to my OBGYN who ran some bloods and urine and felt my bladder and told me it was IC gave me a script for elmiron and book and that was it. i kept reading that visible blood was uncommon so i went to a urologist who "wasnt convinced" it was IC and since i have a family history of renal cancer he wanted a biopsy, hydro, and cystoscopy done. maybe it was the biopsy that messed me up, i dont know. he also tore my ureathra and had to stitch that up and said it was already torn. HOW? and thats why i was peeing blood. well its a year later and i still pee blood and he wants me to go for another hydro to see if it helps, no thanks... I hope i didn't make you feel worse :( Good luck with it all.
Wow, you have really had a hard time. But I think that you should go and get another opinion. You shouldnt still be peeing blood after all this time. Something is wrong. The Uro says my urethra is all scared, and so is the inside of my bladder. How did this happen. Kidney Stones Maybe?????who knows. I still havent made my mind up about the Hydro. I honestly wish they would find a cure once and forall one that doesnt hurt us. God Knows weve all been to hell and back with this. Last night was hell for me. Peeing every 3min. at first a lot came out, makes you wonder where it all comes from. Then nothing except a few drops. Then my kidneys started hurting. I was up for 40hrs straight in pain. Even with taking Diladid. So I took 2 percocet, and a muscle relaxer. That did it. I went to bed, and passed out. Didnt feel a thing. I only take the pain meds when I need it. And boy did I. I also sleep with a teddy bear between my legs when the pain is bad or a heating pad. It seems to help relieve some of the pressure pain. I know it sounds funny. But it seems to work.

[jen74]

Hi.
I totally understand your fear about the hydrodistention. I also refused to do this test. I had just a regular cystoscopy done under sedation. My urogyne said my bladder was severely inflammed and vascular,and said he was sure it was IC. I was glad I decided not to do the hydro. I did research on the hydo test, and there are a lot of bad things about this test in my opinion. First, it cannot be healthy to blow up the bladder beyond it's capacity in a patient with IC or anyone for that matter. It is not natural and therefore the results you get will not be very reliable. I was told by my gyne that they did studies where they did the hydro on people that were very healthy with No bladder issues at all. Well some of them were told they had classic pin point bleeding after the procedure which would dx IC, when in fact they did not even have IC. Just the distending of the bladder damaged it and caused it to bleed.

I always research all things before jumping into anything. Maybe there are some people who get relief from this procedure, and that is great. But everyone is different in how they will react. You know yourself better than anyone. I just started seeing a new urogyne last week and she mentioned that I I should do the hydro test, and I told her no way. I told her that studies showed that people had post-pain that was worse and problems afterwards. She denied this, but I did my research.

Never let anyone try and persuade you to do something you dont feel is right for you. Good Luck Hon, and hope you get some relief soon.

Jen

[jen74]

Hi gailw.
I took elmiron for about a week but it gave me some side effects. It made my heart race. This may have been because it interacted with one of my other meds though. It also gave me bad headaches and stomach pain. I already have a stomach motility problem as it is so this just made it worse. I am going in for instillations next Thursday. I am having the heperain,lydocaine,steroid, and biocarbonate cocktail out in the bladder. My urogyne said that alot of her patients get good relief from this. She does not do the DMSO, she said that it does not provide as much pain relief and can make you flare even worse. I hope this works for me, I am in so much pain with all this. On top of it all I just finished with having a nasty UTI on top of it all. That put me in a HUGE flare or should I say it added to my already exsisting flare. I have other debiliatating health issues with my stomach motility with feeling sick, nausea, bloat , and pain and for a while I was living on only being able to tolerate baby food. But I Hate this darn disease, it is worse than the stomach illness I have, and did not think anything could be worse than that pain I had to live with all the time. But this is. I pray for a cure for all of us one day. Big Hugs to you Gals.
Jen

[patricia1]

Tinkerbell I agree I think that maybe you need to get a 2nd opinion. If you are still peeing blood this not normal. Have you talk to someone who handles Kidney problems. This is just a thought.

The thing about IC is we are all so different in what works for us and what does not. For some the cysto/hyrdo works and for others it does not. But as with any surgical procedure it has some side effects that can happen. Many people do not have problems with the procedure, but there are some that do. The best thing to do is RESEARCH. Look at all the good and bad. See what could happen, and what happens to those that have a great outcome. The more informed you are the better and more confident you will be with your decision. You and only you can choose what to do with your body. Sometimes doctors dont tell you everything, this is why the Internet and this site can come in so handy.

For those consider this remember a few things (postive). As of right now this is the only true test that will confirm IC diagnose right now. You can have the Potassium Sent. Test (PST) which for me confirmed my IC, followed up with the cysto/hydro, but the PST can give false postives. Also you can go on symptoms alone, but remember there are other illiness that mimic IC. A Cysto/Hyrdo can show how bad your IC and also whether or not you have the Hunner's Ulcer with the IC. Some people go into remission after having the procedure done and with some of them they can get up to 6 months to a year of remission. Then there are some negative effects also that can happen including, UTI's, some times the bladder burst due to the distention of the bladder, increased bladder pain and then there are some that basically this procedure does not help then. I am sure others can tell other things and this is not a full list. Just some things off the top of my head.

For me personally the procedure has never helped my IC. In fact I got a nasty UTI after my last one, but I am glad I had it done. For the fact I got my diagnose confirmed and I had to try and see if it would help my IC. But this was my decision and my choice to do, I would not let anyone push me either way.

Good luck to those thinking about doing or going through with it.:pray:

[Moonheart]

Oh goodness! If you are peeing blood after a year, something needs to be done! :(

[Tinkerbell23]

I am going to go for another opinion, but i switched jobs so i have to wait until May when my insurance kicks in.

[L. Thomas]

:hi: :hi: I have had 3 cystoscopes. I was scared stiff about the catheter too. I know there are people that have had problems with pain from a cystoscope, but I have not. I am one of those that used to worry all night before the test. I think that most of the pain I had was apprehension and I was so tense it made it worse. I now do home instillations and I do not have pain from the catheter.

I agree. Tell your doctor how scared you are and ask him if he could Rx something that would help you relax if you decide to do the test. If your doctor is convinced that it is IC why not try some other treatments before having the hydro? Home instillations takes care of the problem for me and I know there are lots of things that work for other ICers.

I certainly would want a doctor that is understanding and considers my feelings If you read around the board you will find there are a lot of doctors that are companionate and some that just don’t give a hoot.

[gailw]

Hi Jen, thanks for the advise, I've made my mind up. Im not going to have the hydro. My regular Uro is against me having it even though this second opinion Uro wants me to. In my opinion I've suffered enough with this. Not to mention 1 or 2 a month I go for Cysto Stat installations. Without anastetic of any kind. Even with those it takes 2-3 days for me to get back to reletively normal. But I've also done some research on it myself and, even though it may help some people. I dont really think I will have one done.
Now I have been taken Cystostat installations now for 1 and a 1/2 yrs. and I find that it seems to be working. All In All I dont get the pain I use to get.
I still get attacks for no rhyme or reason. But they seem to be less severe and further apart, and also dont last as long. Although I was just put on Elmiron (something my normal Uro didnt put me on ). I will see how that works with the installations. So far so good. Only 1 sever attack where I was up for 40 hours.
Rx: Cystostat installations
Oxytro Patches, for urgency
Elmiron,
Peridian, for bladder spasms, (doesnt work)
Dialadid for pain (5mg) doesnt work that well for me)
Percocet for pain( works great even 1) if the pain isnt that bad, 2 if it is)
Cyprofloxin, antibiotic.
Mind you I dont take these every day, only when the pain is severe. I should become a pharmacist. I have my own drug store. ha ha.

[gailw]

HI Jen, what is a DMSO. I live in Canada, and I havent heard of it. Is it a different name for something else?
Hi gailw.
I took elmiron for about a week but it gave me some side effects. It made my heart race. This may have been because it interacted with one of my other meds though. It also gave me bad headaches and stomach pain. I already have a stomach motility problem as it is so this just made it worse. I am going in for instillations next Thursday. I am having the heperain,lydocaine,steroid, and biocarbonate cocktail out in the bladder. My urogyne said that alot of her patients get good relief from this. She does not do the DMSO, she said that it does not provide as much pain relief and can make you flare even worse. I hope this works for me, I am in so much pain with all this. On top of it all I just finished with having a nasty UTI on top of it all. That put me in a HUGE flare or should I say it added to my already exsisting flare. I have other debiliatating health issues with my stomach motility with feeling sick, nausea, bloat , and pain and for a while I was living on only being able to tolerate baby food. But I Hate this darn disease, it is worse than the stomach illness I have, and did not think anything could be worse than that pain I had to live with all the time. But this is. I pray for a cure for all of us one day. Big Hugs to you Gals.
Jen

[jen74]

Hi Gail.
I agree with you. If you are doing ok with the instills, then I think it is best leave well enough alone. Why put yourself through a test that could cause complications just to find out something you already know you have, not to mention the cost. Always trust your own instincts.
Jen

[jen74]

Hi Gail,
I forgot to mention, DMSO is another type of installation they do. The urogyne I use to see wanted me to do these, but I read up on them and was not to keen on what I read. I do know that it does help some people alot though. The new urogyne I see , she only does the heperain,steroid,lydocaine,biocarb instills. This Thursday will be my first one. I hope it helps. I am so worried about getting a bad side effect or that it will irritate my bladder even more or swell it up where I wont be able to pee or something, like an allergic reaction. I am paranoid since I am sensitive to meds as it is. Anyhow, please keep your fingers crossed for me. Thanks.
Jen

[stacyY]

Hi there;
Well I know how you feel. I have lattely had problems with catheders my self. The stupid ER doctor said he was going to leave the catheder in all night long when i was crying the whole time it was in. And the same day i hd one in and i was crying from that too. Happend becasue my bladder froze up"was paralelized" that was last month. In april I am going for my 2nd cysto/hydro. I am not to worried on it. They put you to sleep.and you dont feel it at all. It helps a lot with the frequency. I went pretty much over a year with out haveing to get up in the night.
But I am to the point right now that i can stand it and somthing needs to be done. Its realy not as bad as you can imagin it to be. I had to idea also how it would be and just not knowing is the hard part. But now that I know i dont worry over it.
I really recomend going threw with it, I went 10 years with the wrong diagnosis. And wrong medications. andYears of wondering why things never got better. This is a good chance for you to know 100% if its IC or not.Plus they will know how bad it is and how better to treat it if they can see it.
The urologist i am seeingnow is a differant one then the one who diagnosed me. So i am hopeing what she see's will help her to treat the IC better.
So good luck dear. I really hope you go threw with it. I think in the end it will be worth it for you.Be strong.
take care
stacy

[jen74]

Hi stacey.
what caused your bladder to freeze up and become paralyzed, was it the hydrodistention?
Jen

[stacyY]

:hi: Hi;
No, I am not sure exactly. I just woke up in the morning, went to go to the bathroom, and nothing would come out. Nothing at all no matter how hard i would strain. So i called the urologist, I went in and she used a catheder. then in the afternoon, and evening time didnt go.Then It was like 10pm. It was about bed time, I didnt go again. I kept trying nothing will come out. So then,I went to the ER.
The Er doc said that he seen this a lot of times before with people who have IC.HE said what happends is that your bladder was haveing spasims. It was contracting in and out. And it got stuck on and out contraction. ANd so there it was in a paralized condition. It didnt hurt, except for the fact i couldnt pee. I did start hurting in my back cos he said the urine starts backing up into the kiddney. So they also did the catheder. It hurt so bad to have the catheder in thats for sure.
The doctor put me on Flomax, its for men and their prostrait, which i couldnt take after a few days on it my heart was racing and i was very dizzy.
But the next day, I was able to go as normal. The Er doc did tell me though that this is a very common thing for IC patiens, and it probably will happen frequantly. Not good news to hear.
Not much to tell you but its all they acculy told me.
thanks,
stacy

[verdicries]

I've made up my mind - I am NOT having the cysto/hydro done - at least not now. I see a new urogyn on Friday (I am SO freaking fed up w/my reg. urologist, he is a JOKE. I'm sorry I'm not a man with ED and want Viagra! I'm a woman with an ACTUAL PROBLEM that you need to HELP ME FIGURE OUT!). Although she's all the way down in Lakewood (40 painful mins by car) I will go to her since my gyn highly recommends her.

I am so frustrated. My urologist kept canceling appts on me, the other 2 urogyns I saw were WORTHLESS. I have gotten NO compassion from the medical community - EXCEPT from my rheumatologist :woohoo: (whom I just saw Monday). I love him and wish he were closer (he's in Suffern, NY - I used to live in northern Bergen county and he was 10 mins away...now he's 1 hr 45 PAINFUL mins but I LOVE him and don't want to change!). Only my rheumatologist spent TIME with me trying to figure out a plan of action since my fibro pain is acting up again, as well as my IBS. And now I have Raynaud's...grrr. I am not a person to most doctors, I am a COPAY. :cussing: :cussing: :cussing:

AAAAAAAAAAAUGH!!!

I feel a bit better now...

[stacyY]

Ohh my gosh girl,You ned to take few deep breaths and settle down. Just reading that made me stressed out. I cant imagin how you feel. I feel your frsutration in your words. Try to remember stress makes all these situations worse. I know from experaince.It makes it feel 10 times worse when you are tenced up inside. I am not a big fan of medication. i cant sit still for 10 mins to try to think of nothing, its just not something i can do. But i am a big fan of taking a hot bath to relax, just lay there and breath in the heat. Add in some nice bubble(unless they irritate you which it does me) or some bath salts or even a nice smelling relaxing candle play some relaxing music and jsut lay there for 10 mins to get a few moments to just be calm. Cos girl I feel your stress. Its hard when you havae no doctor on your side. It sucks rotten eggs. I am glad to hear your changing doctors its a good step. Take charge in this for your own mind. And as i said to one nice person before, Doctors are just perople who have expencive degrees, they are no better then you or I, There is nothing soecial about them except they choose to learn somethings differant then we did. Thats all. Nothing else.
Hang in there. Its ruff i know. Doctors seem to be idots at times, I had an experiance today. This is funny..No kidding on this, this week i was to go to a special hospital, but since i lost my job i cant aford to drive there and back 100 times as they feel the need. So i told my ob/gyn, who refered me to see an ob/gyn in the special hospital. Well i left a message for her saying i cant go lost my job please refer me to someone closer.
So today i get a call. The nurse said she talked to the doc, will refer me to someone in a town over i said ok fine thats good. She called me back like 20 mins latter, Saying well doctor said to refer you to a urologist, and the one i called, said they are already seeing you. I was like yeah, lol she asked well you still want to see them? Yes oif couse that is who is doing the surgery on april 2nd like i said. She said ohhhh, ok then i will tell the doctors then she said. I Dont get it why then for the Hospital where they sending me to another ob/gyn. Its makes no since at all. and i have the same situation as you they are always canceling my apointments,and changeing times, and all that. Such a pain. Docotrs dont make much since some times.
So please hang in there and try some form of relaxing even if its for 5-10 mins. It will help a lot. Your so upset and stressed out, which just makes it all worse.
Take good care of your self, and good luck with your new doctor. I hope this one listens to you. And when you go there, let them know how many doctors you seen, and how they treated you. ask them up front can you help me and if you cant then please refure me to who can so you dont waste either of your times. YOU have to be very direct. Not rude, just direct. Go in with a list, write it all down, even better, type it out, print it and when you go in, when you fill out the new patient form, say you liek the doctor to look at this before he comes in to the room. It will be him/her a good heads up. Try to be strong. YOu can do it i know you can. Things will hopefuly work out for you soon. I at least really hope so. good luck and best wishes for you.

take care of you!
stacy