Anxiety

[massagedoula]

I am making myself freak out over getting this cysto. I scheduled it myself, I didnt have to have it, and now I keep going over in my head if I really need it. If it makes me worse afterwards I dont know what I will do. I am so scared I cant think about anything else. I keep going on the internet and reading about it. THIS IS THE IN-OFFICE CYSTO I am taking about. Nothing much to all you veterans but REALLY SCARY for me. I dont have it in me to have more pain...I couldnt handle feeling like I was peeing glass afterwards for days on end. Would it damage my bladder or urethra? I dont know what to do...cancel it? What will it really show anyway? I am freaking out if this is the right thing for me....

[ICAmy]

I was soooo scared to get my cysto. I put it off for quite awile. I was afraid. Afraid of the pain, afraid of what they would find, just plain afraid. I won't lie... it did hurt, but not more than I was already hurting. I was like a normal day in the life of all of us with IC. I would suggest taking some type of pain med (not necessary, but would be helpful). I didn't but thought it would have been nice. Believe me I am a scaredy cat and if I can do it you can do it! The anticipation was the worst part. The procedure really was quick and once its over ..... its over. Remember the anticipation is the worst part.

Wishing you a peaceful nights sleep!
Amy

[massagedoula]

Thank you so much for replying so soon...I assume that your cysto showed that everything was "normal"? What happened next, in terms of what the doctor said/did/suggested? I do not want a hydro so I hope that that is not the next step.

How long did the burining or increased pain last for you afterwards?

Do you think it was worth it, in your opinion?

[Sarojini]

I have never had an in-office cysto (my diagnosing uro went straight to the cysto/hydro step), but I hope yours goes well. I have heard that it is scary beforehand but many people later say that it wasn't too bad... kind of like being catheterized. Relaxation exercises during the procedure will probably help.

I do think that the test can be important to rule out any structural abnormalities in your lower urinary tract, and that perhaps you'll feel calmer about things after the procedure.

[ICNDonna]

The benefit of having a cysto is to help rule out causes for your pain other than IC. It can be an important part of an IC diagnosis. If you've ever been catheterized, that's what a cysto feels like. After I had my first one, I was uncomfortable for a little while, but I went back to my office and worked the remainder of the day.

One thing my doctor found out by doing the cysto was that I had low bladder capacity, which can be one of the signs of IC.

I was diagnosed by having a hydrodistention. The hydro helped my symptoms for many months. That was in 1975 and I have now had either 37 or 38 hydros and will be having another soon --- my last one was in July 2004 and my symptoms are returning. I discussed another hydro with my uro last week and am trying one more pill for a few days before we schedule the surgery.

Donna

[ICAmy]

Hi,
I would say I was uncomfortable for a day or two, but not in anymore pain than the usual flare. The procedure was almost exactly like being cath. and really was more uncomfortable than painful. I had the cysto right there in the office and it only took about 5 min. Waiting beforehand was the worst part. I put it off for about 6-8 months, but finally the uro said it wasn't good medicine for him to not do the cysto. He really wanted to do the hydro and cysto at the same time but because I was so afraid of the pain (and being put out during the hydro) I told him I would only do the cysto. I got to watch the whole thing on a tv monitor next to the bed. I was really neat to see the inside of my bladder. Yes, everything was normal. I had never even had a cath. before I did the cysto so I really had no idea what having something in my urethera would feel like. It always hurts so bad I couldn't imagine sticking anything in it. But because the cysto went as well as it did I was much less afraid to do the hydro, and a few weeks later I went ahead and did it. I did get painkillers for the hydro and was groggy the rest of the day. To tell you the truth it was nice to be able to really take a day off and sleep. I had a sitter for the kids and I slept the rest of the day. Actually after the cysto I took it easy the rest of the day too and was back to taking kids to school the next day.

Believe me I was scared to death, but really the anticipation was the worst part and as soon as you do it it will be over. They dx me with IC and now is the tough part.....getting a handle on that!!! My naturopath has helped some but really the diet seems to help the most. Along with knowing I need to stay away from sex (which my husband is having a hard time with), swimming, baths, pop, wine, etc.....

Keep me posted and let me know how things go. You can alway PM me anytime.

Amy

[massagedoula]

When you all say that it feels like being catherized...that is when my fear comes in. I had a catheter only once since my symptoms started. I was in the ER with bladder pain at the very beginning of all this, and they wanted to take a catherized urine sample, because all my clean catch ones still showed mixed gram positive bacteria, and they thought that was contamination from the outer areas. When they catheterized me, the pain was so great that I started having full body muscle spasms. They could get nothing out because I was in such a spasm. Afterwards the burning was horrible, and I cried and cried....eventually a nurse came in and gave me a shot of Demerol. Normally I would never have accepted that shot, but the pain was the worst I ever felt. I don't remember much afterwards, but my husband said that I still cried and cried and was upsetting all the other people in the ER, so they came in and gave me ANOTHER shot of demerol. He took me home and I slept for 36 hours straight. He kept checking me to see if I was breathing. When I woke up 36 hours later, I instantly had to pee, and it STILL burned.

So you can see why I am terrified. This is my only experience with being cathertized, and if anyone else can tell me more reassurring stories, then I would love it. The problem is that my pain level is today at a 2! The lowest it has been in almost 3 months....so I am so scared of going back to a 8-9 and staying there for weeks and weeks....please tell me how long you had increased pain after your cystos?

And...do you really think it is something I need to do???

[vm]

Have the doctors proposed any other way of looking inside your bladder? You'll always question yourself if you don't have it done. :( I know you are scared to death - we all were, even us "veterans". I promise you. I remember worrying before my cysto w/hydro (I know that's not what you are talking about) I was very frightened thinking, "What if it makes me worse???" But I knew the chances of that happening were very small and I frankly wanted to end the "not knowing" space I was in. That was causing so much emotional pain that I wanted to move forward from that place and on to knowing what was going on and how to make it better. The payoffs outweighed the risks for me.

Have you talked to the folks who will be doing it at the hospital? Are they going to give you pain medication for afterwards in case you do have a lot of discomfort? I would insist on it.

[massagedoula]

How else can they look inside a bladder? I already got an ultrasound. That showed nothing wrong with my bladder but that I have polycystic ovaries. This doctor (who I only met once for 5 minutes) said that an ultrasound cannot pick up things like actually looking inside can. But I wonder...what would they really even see anyway? I'm going around and around with this and it is making me crazy.

[massagedoula]

Also..no pain medication. They say "it is just a simple in-office procedure" and treat me like a chicken because I am so afraid. They did say that they would do it under anasthesia in the OR, but it wold be much more expensive and there would be really no reason to do it. I stopped calling them. Now I just have to decide if I will even turn up or not. I don't care about the fine if I don't show up at this point.

[Portia17]

If you r talking about an in office one, I had no pain. He just numbed it and looked in there to see if I had any tumors or strange things

[massagedoula]

What about afterwards? That is what I am really worried about...increased pain or burning....I have been feeling pretty good (compared to the last 2 months) recently and I am so worried of going back to how I was.

[VickiB]

The afterwards part is what really, really scared me when I had my in office cysto done! Thankfully it didn't cause me to flare. I was a bit irritated for a day or so after, but not enough to slow me down at all.

Vicki

[ashleyf3]

[SIZE=2]I had the same experience with caths and remember when having my children I wanted the epidurals for the caths more than the labor pains! When I had the in office cysto the truth is HURT he was only able to stay in for about 2 minutes due to the pain - long enough for me to see that my bladder was covered in ulcerations! I did have painful urination for about 24-48 hours but the nurse gave me some pills for spasms to take home(turned my urine blue) that helped take the edge off.
Today I had the cysto/hydra and biopsy of my ulcerations under general anesthia. I was given the diagnosis that I do definetly have IC with uclerations (that is why I found this site). My doctor puts in suppository called a PO or BO or something that has something and Opium in it before he begins the procedure that he has found sucessfully helps the spasms. Now as I sit here it has worn off and the pain meds he sent me home with aren't helping too much. But I know that I will feel better soon and I am just glad to have answers!

I hope I haven't scared you but I know I appreciate when people tell me their experiences. Feel free to email me at anytime rlfancher@mindspring.com.

Blessings
Leah :angel: