Cysto done yesterday

[Jean12]

Hi all, I said that I'd report what happened with my cysto/hydro/biopsy. As is typical with me nothing goes the way it should, so please don't anyone use my experience as a determining factor for your own upcoming procedures.

Everything started when I reminded anesthesia that my daughter has malignant hyperthermia (a potentially deadly reaction to certain anesthetic families). They decided they were going to use heavy sedation instead. Well the doctor got about 400 cc in when I started to get restless and he stopped filling. He never got the bladder as distended as he would have had I been fully under. He saw nothing in there that would give him the indication of an IC diagnosis. He did tell me that my urethra was rather tight so that got stretched while inserting the scope. He did get the biopsy done before he closed up shop.

So...I spent eight hours in recovery in agonizing pain with severe pressure. I hadn't eaten in over 24 hours and didn't care. It took 3 shots of demerol in my IV, pyridium, O&E suppository, and some percocet before I was feeling okay enough for them to send me home. Honestly, I wished they would have admitted me but they didn't have any beds. Like Sarah, I feel like there is a knife wielding fiend running up and down my urethra every time I pee. I'm taking the pyridium and percocet trying to stay comfortable and drinking lots of water. Of course the more I drink the more I pee and that isn't pretty. There is still some blood, but I know that is normal. Youch, just not what I expected.

Jean

[liznazz]

Please make sure your Uro gave you an antibiotic after the procedure. I developed a UTI from the procedure and it took about 5 different antibiotics to finally clear it up. You should be feeling better in about 2-4 days. Of course not everyone gets a UTI, but as a precaution, it is good to be on an antibiotic. Good luck. liz

[Laurie248]

Hey everyone:

Honestly, I'm thinking about not going to get this procedure done next Wednesday. I can't believe these horror stories I'm hearing. :( My urologist said he gives me an antibiotic in the IV before the procedure -- I don't understand why so many people (if any at all!) are developing UTI's from it???? Also, he said he'd put a pretty good numbing agent in the bladder before he finishes the procedure as well so that I won't be in that much pain. So why does everyone say they are peeing knives??????

Ugh, is my urologist minimizing the pain I'm going to have from this or what??? I mean, the way he talked to me about it (and I'm not, by the way, expected to have the hydrodistension part of this -- he said if my bladder capacity is normal, there wouldn't be any reason to overextend it (made sense to me) it sounded like it wouldn't be that horrible. Diprivan in the IV prior, antibiotics in the IV prior, he goes in with his scope, looks around, he even said he may not even take biopsies if he doesn't see a need to, he puts a good numbing agent in the bladder, I wake up, and it's over. I left there thinking the procedure actually sounded doable.

Now, the more I read about "this is burning" "this is bleeding" "I'm peeing knives" -- I am *emetophobic* -- anything that causes nausea or vomiting, I avoid like the plague, I hear everyone is taking all these pain medications and I'm besides myself because I can't/won't take them if they cause nausea (and I've heard they do!) At this point I'm seriously considering calling the doc and canceling the procedure.

SOMEONE HELP!!!!! Why is everyone in so much pain and agony? Is my urologist lying to me? Sugar coating it???

This is really ruining my daily activities - agonizing about this. I can't concentrate at work, I'm miserable at home with my husband, we're supposed to go away for his birthday this weekend and I'm sure I'll be stressing and agonizing all weekend long too -- my cysto is set for next Wednesday. If I don't get any kind of mental relief or comfort about this, and what I'm in for is really that horrible, I'd just as well not go through it and deal with the pain I have on a daily basis. Although, that's not worth it either. :( I feel like I have no choices here...

Help,
Laurie

[jeanababy]

Laurie,
I just wanted to say that I had a cysto done last April (no hydro--doctor didn't do that part because she said I didn't have IC, but they really don't know unless they do the hydro). It wasn't bad when I woke up. Just a tiny burning when I used the bathroom the first time. She said everything was normal. After suffering for five more months my new uro did the cysto/hydro that left no doubt that I have IC. My bladder only holds 400 cc's under anesthesia and there is alot of pinpoint bleeding. I had a catheter in after the procedure because I had to ride 3 1/2 hours back home in the car. I was sure it would hurt after I took the catheter out the next morning but I didn't even feel any burning when I went to the bathroom and no bladder pain. Within two days I felt normal again for the first time in years with no pain or burning and have been symptom free until the last few weeks. It definitely made me feel better for almost 6 months so if I start having more symptoms I will definitely schedule another cysto/hydro. I had a great response to it. You just won't know until you do it; I was scared too but it was fine.

Jean L.

[Jean12]

Laurie, I'm so sorry you are agonizing over the decision about having a cystoscopy done. My situation is rather unusual. I'm having some bleeding because of the biopsy. This is normal and it is by no means heavy. I believe that I was having so much trouble with the pain from peeing has to do with the fact that my urethra was tight and was stretched, that is not the case with most people. I did have to take a lot of medication to get things under control, again this is highly unusual. The doctor was surprised to find me still in the recovery room when he came back. There are many, many, many people on this board who have cystoscopies done with nothing but mild discomfort and no need for pain meds. With all the pain meds I had and no food I still did not have any trouble with nausea or vomiting.

Laurie only you can decide if this is right for you or not. It is my belief that if a poll were taken, most individuals who have this procedure done experience little pain (more like discomfort) after. Like everything else in life it is the scarey experiences that you remember and stick in your mind, not the uneventful ones. Have a long talk with your doctor and if you feel comfortable and trust him, then go for it. Odds are that you will be one of the people that have little if any trouble with the procedure.

Good luck and I'm sorry that my experience has scared you more than you already were.

Jean

[Laurie248]

Jean:

Don't apologize - it's OK. I'm so petrified - I guess the "bad" stories are just making it worse. At this point, I'm debating going in there for the test. Let me ask you -- were you in a whole lot of pain BEFORE the procedure?

I should say, I have my period now (and all the related woes and pains) but peeing for me, at the moment, is the most comfortable it has been in MONTHS. I'm hesitant to go for the procedure now because this is the most bladder/urethral comfort I've had in months and months and I'm afraid it's just going to make it hurt and burn all over again.

Were you in bad pain prior to the test???

Laurie

[Jean12]

Before the test I was in mild to moderate pain off and on and always had the feeling of pressure. The other thing that probably plays a role here is that I had a hysterectomy at the end of August and my doctor told me that it can take up to a year for a normal bladder to feel right after a hysterectomy, so that may be where some of my problem is coming from.

I am now just about 24 hours post op and am doing okay. I still have some mild buring when I pee but it is not the knife wielding pain I spoke of earlier. I'm uncomfortable, but I know not to expect to feel relief immediately. To be very honest with you, even knowing what I know now, I'd still go through it again for the hope of getting an answer and possibly experiencing some relief. After all of the medication kicked in, especially the suppository I felt good for the first time in years, I had no pain or pressure. If that is a possibility for some of that same relief when this heals, it will be worth it.

Look at it this way, if you decide to go ahead with the surgery and you do not have trouble that is great. If you experience problems, big or small at least you will not be surprised by them and knowing that others have experienced it and been better in the end, may be enought to get you through the rough spots.

I wish you luck and comfort whatever decision you make. :kissing:

Jean

[tangelo1423]

Laurie,

I had the procedure done on December 21st and it wasn't nearly as bad as I thought it would be. I only had minimal pain afterwards, but codeine took care of that. I was even able to keep my Xmas travel plans. I wasn't having many symptoms right before I went in either.

Everyone's reaction is different and you could most definitely be on the pain free end. :)

Good luck!

-Angella

[IC SARAH-CPP]

Laurie,
The procedure you are having is NOT the same as the one we had. I had what you are having and had VERY little pain from it. The one that we had ( with the hydrodistention) is a much more severe procedure. The doctor basically stretched my bladder out WAY past its normal capacity, then left it like that for awhile, then cut a section of my bladder out, so this is a more painful procedure than what you will have. Try not to let all of these posts scare you, because I did have the regular cysto done and it was not bad at all. It WILL hurt when they stick the stuff in there, but nothing too bad!!
Love Sarah

[IC SARAH-CPP]

Jean,
I am sorry to hear the knife wielding demon attacked you too!! But, I am glad to hear that your pain is better now and more under control. I wish I could say the same but sadly, the knife man is still here with me! The good news is that I am having a little less pain today, mostly still when I urinate, but it is better. I wish they would have given me percocet, I had only vicodin, but it worked, so I guess I cant complain.
Let me know your progress!!
Love Sarah

[Laurie248]

Hi Sarah:

Thanks for the reassurance. Yes, I'm so confused by all these procedures.

My urologist said: "Yes, there is some fluid put into the bladder so that I can look around, but why would I overinflate the bladder if I find it is of normal capacity?" Now, if he goes in and finds out my bladder is BELOW normal capacity, while I'm out, he might overfill it like you're talking about, but from the start....I don't think that's the gameplan. Basically, he said the procedure is: "cystoscopy with random bladder biopsies". He said when I come in, I get an IV with antibiotics in it and Diprivan, then they give me more Diprivan to make me go to sleep. He then goes in, puts fluid in the bladder, looks around, determines if he needs to do biopsies based on what he sees, and then that's it.

Does this sound familiar??? I'm so confused by all these things I'm reading that I'm frightening myself.

Bottom line, my two main concerns with ANY procedure, are: nausea/vomitting and pain. Those two things, in and of themselves, actually frighten me more than a diagnosis (if you can believe that). So basically I'm looking for thoughts and advice on how much of either, or both, I will have with the procedure I'm having. That's what I've been surfing this message board for. I never know what things I read about, apply to my particular procedure....

Thanks for helping, I appreciate it -- and I do hope you feel better soon!!!

Laurie

[IC SARAH-CPP]

Oh yeah, Laurie I wanted to tell you one more thing. I have had three surgeries in the last year and everytime they told me it wouldn't hurt!! Then it hurt like hell! I think they just tell you that so you won't be scared or something. Because today I told my uro that the other doc told me this wouldnt hurt and he said that he expected it to hurt me badly!! So, there you go, maybe the uro is trying to make you not get scared before hand or something. Try not to stress so much, I am sure that is making it worse.
Oh yeah, and i was in quite a bit of pain before hand, but nothing like what I am having right now.
Love Sarah

[IC SARAH-CPP]

Well lets see. I wont lie, I did have some nausea after the procedure, followed by some vomiting. BUT - I have been put under four times before this and never got sick, so there is a good chance you wont get nauseated. AND - if he doesnt distend your bladder, then you wont be under for long. My uro told me the distention is the longest part of it. I was put to sleep with a mask, when I woke up I had some pain, then they gave me morphine and it wasnt bad at all.
The worst part is PEEING!! It DOES hurt, I wont lie, even with a regular cysto, it wil l hurt to pee. But water and time will heal that. IF your uro is good, he wil give you pain medicine and my advice is to not worry about working, to worry about healing. The longer you give youself to heal, the quicker you will heal. Do you know what I mean?? I always have a hard time with this because I try to go back to work right away, and end up pushing myself too hard. So give yourself some time, it is a surgery!!
Please let me know if I can do anything to alieviate any of your worry!! You can ask me a thousand questions and I will do my best to answer them - Truthfully!!
Love Sarh

[hoping4acure]

OK....I have 3 hydro's done, and I haven't had ANY complications with any of them. I was put on antibiotics once. There was a lot of pressure after the procedure, but they gave me some morphine and pyridium and I was fine. The first two times I was under anaesthesia and the last one they knocked me out with drugs, I wasn't awake and don't remember anything. I had the last one done in November and I have been feeling great ever since.

[vm]

Laurie - PLEASE remember that you will hear the worst of any procedure when you are reading a health related message board. People who have a procedure done and feel fine don't post that as often as people who had a bad experience. When any of us has a bad experience we need so much support and that draws us to post on the board.

I had a cysto and hydro done back in 2001. Was it fun? No. Was it awful? No. Would I do it again if I had to? Absolutely.

[Jean12]

Laurie, I know how much the thought of the nausea and vomiting scares you, literally. I can only speak for myself. After this procedure I did not have any nausea or vomiting and that is with a lot of drugs on an empty stomach. I have had general anesthesia, epidural, and spinal anesthesias before and did not have trouble with either the nausea or vomiting. I told the anesthesiologist that I didn't want to be vomiting (especially after my thyroidectomy) and he put stuff in the IV that kept me from getting even a little nauseous. The IC kicked in terribly but I didn't vomit or feel nauseous. :bow: I strongly urge you to speak with the anesthesia dept. and tell them of your phobia and I'm sure they will be able to help you out.

Wishing you the best.

Jean

[hoping4acure]

Very well put Kim.....that's it in a nut shell!!!!

[ICNDonna]

I'd also like to chime in here. First of all, it's totally normal to have some nervousness and fear before having any procedure done, especially one involving anesthesia. If you weren't just a little scared, I'd have some concerns about you.

That said, I also want to share that I have had well over thirty hydrodistentions and each has improved my symptoms significantly. Will I do it again? Absolutely!

Also, I have a tendency to become nauseated with anesthesia --- which I always tell the anesthesiologist before the procedure. I have spinal anesthesia for hydros, but there is still some nausea unless I am given anti-nausea medications. And I haven't found any pain medication that doesn't cause nausea for me, so my uro automatically orders a 25 mg phenergan tablet for every pain medication he orders for me --- and it works!

You will very likely have some discomfort following the procedure --- the first few urinations can be very painful --- but after that, it's not bad at all.

Warm encouraging hugs,
Donna

[JMichele]

Laurie, I just had a cysto/hydro done a couple of weeks ago. If you're worried about feeling nausea when you wake up ask them for Zofran right when you wake up. That is what I do; if I don't ask for it right away the feeling comes so I nip it even before I start to feel it. Yes, it does burn when you urinate afterwards but if your not having a distention, as others have said, you won't be in too much pain. This procedure has now worked for me 3 times. Although I am sore for a few days after, the pressure and pain I had prior to surgery is always gone and I have so much relief. Try to keep at least a little bit of something in your stomach afterward so the pain meds don't make you sick. I always get a shake on the way home from the hospital before I take my next dose of pain killers. Pyridium helps with the burning after too, again, as others have said. I know you're scared, I was too, but I would definitely go through with it. You might find that, like me, this really helps your symptoms. Good luck...and let us know how you are doing.

[donutgirl]

Laurie.......I can only say that I had my first cysto/hydro this past Sept. and it gave me decreased pain for 4 mos. I have another scheduled for this coming Friday and I am actually looking forward to it because I feel it will again help me. Yes, there was pain after the procedure, but I had a concrete diagnosis after being through numerous tests, ER and dr's visits AND a couple of weeks after the procedure I began to notice the decrease in pain. Good luck! My thoughts and prayers are with you.

DIANE

[Barbie]

This must be the place to ask questions about cystoscopy, it sounds like you've all had to deal with it. I haven't even seen my uro yet and I'm already totally afraid of this procedure, and have decided to tell him "no" if he wants to do one! Is it really necessary? If I have all the symptoms of IC, my present doctor has diagnosed me, and I respond to the treatments (Elavil, pyridium), then why do I need it? I'm on Elavil now and feel fine, won't this procedure just stir up trouble in my bladder? I read about one doctor who was a guest speaker on this site who believes cystoscopy is not necessary. I admit, I'm afraid of anymore pain. :help:
Barbie

[shennan]

where are you in western ma?

i am from pittsfield. i understand that the current urologist(s) there are no help for ic'ers. recently, i found out that my mom's first cousin has ic. i went to one uro there in 1994 when i moved back for 9 months. this uro does not help ic'ers...

hope you are somewhere else in western ma!

;)
shenna

[Laurie248]

Barbie:

I'm with you -- wondering if the cystoscopy is even necessary if all of the symptoms are there and you find that the things that would treat IC, are treating your symptoms (I'm the one who chickened out of the cystoscopy halfway through the procedure -- I didn't even make it to anesthesia I was so terrified).

I guess the only thing I can guess is that...the cystoscopy would rule out other (scary) things? And that's why it might be necessary? I mean, my uro has me keeping a food/beverage/pain/sex diary right now for 3-4 weeks, after which we'll reconvene and take a look at it and see if anything stands out. I'll probably pay attention to my period and possible ovulation times re: increases in pain as well.

I don't know if I'm going to need to make a second stab at the cystoscopy or not -- the fear of NOT knowing if it's something bad, is also equally frightening - I don't know about you. But I am curious to hear other board members' thoughts on this question....

Laurie

[Jean12]

I'm originally from Pittsfield but live in Housatonic now. I once knew a Shenna from here. As a matter of fact I used to baby sit for her and her brother sometimes. I was friends with her mom. I haven't seen her in ages. You wouldn't be her by any chance? I'll pm you. You are right the uro's here aren't much help. I've found a great practice in Holyoke. The travel time is just slightly longer than to Pittsfield, but the treatment is worth the travel. The only bad thing is that my mother still lives in Pittsfield so if I wasn't feeling well I could hang out there and go home when I was doing better.

Jean

[mary124]

I had a hydro on the 18th of this month. I usually have a little pain for the first day when I pee, but that is it. I'm offered pain meds but I usually don't need them. This was my 4th or 5th one, I can honestly say it does help me for anywhere from 6-8 months.

[Pristine]

I too had a wonderful experience with my only Hydro-distension with Cysto. I woke up and i asked my doctor what on earth he had done to make me feel so wonderful. He offered me pain meds to take home but i refused and took none at all. I was out walking and excercising the next day after the procedure. I may have passed like one tiny drop of blood. The Hydro was the best thing i've had done for my IC except maybe getting on Elmiron. All of us are so different with our IC and how it reacts to different things but Hydros do not always turn out bad.
Huggles
Pristine

[Amyinagony]

To all of those asking if Cystos are neccessary. I would say yes if you have never had one and have all of the bladder symptoms, because this would r/o other possible causes for your bladder problems.