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Old 10-29-2004, 01:24 PM   #1
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LonelyTraveler HB User
Red face Cystoscopy and other issues

Good afternoon and I'm sorry this is so long...

First of all, I want to thank you folks for all of the help and advice you have given me and let you know that it is really appreciated. I have found a great deal of inspiration in what I've read and of course, as much as I would'nt wish this on my worst enemy, it is nice to know that at least I am not all alone and that I have someone to turn to .

A few things I'd like to say...

I have been on Levaquin now for over a week. This medication is making me have the most frightening nighmares I think I've ever had in my entire life. They almost appear to roll off "assembly line" style because I have maybe a dozen mini-nightmares most nights and they just keep coming non-stop like some kind of "nightmare factory". First I'm being mugged by some street gang, then I'm being placed in a psycho ward, then I'm in handcuffs being carried away, then I'm being chased by a grizzly bear, etc. By the time I wake, up I feel like I've just emerged from the bowels of hell and I feel just horrible and it affects me all throughout the day. Levaquin seems to act as a "dream engine" that takes all of your worst fears...that horror movie you watched last night, etc and makes it a REALITY as soon as the lights go out and you fall asleep.

Anyway, in addition to the dreams, it is possible (almost certain) that the urologist will want to do a cystoscopy on me next week when I go in for my appointment. I have read so many horror stories about this procedure but have also read some cases where people were helped by it because the urologist found strictures and was able to remove them surgically. However it seems that most people found it very painful, embarrassing and a complete waste of time and that the only reason they are performed is because the urologist gets a nice, fat $500.00 reembursement fee from the insurance company and it looks like they are at least "doing something". I've also read that you are completely naked, spread eagle and in stirrups while this procedure is done and that most urologists prefer to use a rigid cystoscope because it allows them greater flexability and they are able to do whatever they have to do right then and there and that if they did find anything (ie; strictures, cysts, etc) they would end up having to use a rigid cystoscope anyway. I have heard that when they use a rigid cystoscope, it can be VERY painful, a lot of burning and that you can bleed quite a bit and be sore for a month or more. I am having this done as an office procedure and I have lived in a constant state of TERROR at the thought of it for 5 days now. I even have nightmares about it!.

This whole thing (my second time around with prostatitis) actually began about a week or two after I had experimented with anal sex (I'm male and it was with my wife of 4 years). I really don't believe this was caused by "strictures", cancer, etc because (1) the antibiotics did clear it up for the most part and (2) I had zero problems for over a year and a half until I had unprotected anal sex. Yes, I know now that I was really stupid for having anal sex and that I should have used protection even though it was with my wife and yes it is embarrassing for me to admit that I did it but I think I should be completely honest with you folks.

I would really like to have a trans-rectal ultrasound done of my prostate and seminal vesicles but I am on medicaid which pays only a third of what private insurance pays and doctors who accept medicaid must navigate through a slew of paperwork and federal guidelines so there's not much incentive there and treatment is often minimal at best for prostatitis sufferers on medicaid. I don't say this to complain and I'm not one of those "I'm a victim and society owes me" types but this has just been my own experience as a medicaid recipient. Anyway, the other thing that really complicates matters for me is that there is only one urologist within a 150 mile radius who accepts medcaid and so I am stuck with him. While I have heard that he is "the best" and have generally found him to be an excellent urologist, I feel that he has a "God complex" and does not listen to his patients. I call him "Dr. no" because whatever I ask him for (a particular test or medication, a refill, etc) he always say's "no" and if I ask too many questions about something he get's impatient and threatens to refer me out to someone else but the thing is, there IS noone else in my area who accepts medicaid and he knows that so I have to really toe the line with him or risk not being treated at all.

I guess the bottom line in all of this is that I am desparately looking for a way out of having the cystoscopy done. Like I said, I am having nightmares over it and it is really starting to affect me day by day and making me extremely depressed. It's like I'm in some nightmarish fog thinking about this thing and want to avoid it at all costs in leu of some other test like a trans-rectal ultrasound (which is very good at visualizing the prostate and seminial vesicles). What really prevents me from cancelling my dreaded appointment is that I read another post here where someone said that they had a sensation like a golfball was lodged in their rectum and after a cystoscopy, the urologist found strictures, removed them and now this person has had a 90% improvement of symptoms. Still, I really feel that even though I may or may not have strctures, the primary cause of my condition is from having anal sex. To balance it out, I also read another post where someone had a PT done and this solved their "golfball-in-rectum" sensation which tells me that I may not even be dealing with a stricture issue here.

Another thing. I had always heard that prostatitis sufferers should "keep their gland cleaned out" by masturbating regularly and so I became obscessed with masturbating at least once a day and sometimes twice. It "felt good" but there was a LOT more "fullness" in my rectum afterwards (normal?). Anyway, Per some advice I received in this forum and having remembered that the last time I had prostatitis (over a year ago) I had limited my masturbation to every other day and even went four days without masturbating, I now hav'nt masturbated in two full days and my symptoms have greatly improved (although they are still there to a minor degree). I had a 100% recovery the last time so maybe it was because I limited my masturbation to a few times per week. I'm not sure.

Finally, I have heard and read a LOT of stories about how prostatitis sufferers were able to achieve up to 90% relief from symptoms by taking Neurontin. Even the pharmacist told me "oh yes, that's some good stuff. A LOT of people take it for that reason". I was just wondering if this is true because I went to the doctor yesterday and got a prescription for 90 pills which I will get pending something called a "medicaid override" in the next few days. Any side effects I should be aware of?

Well, I guess I'll close for now. Thanks once again for all the great help and I am very happy I was able to find this place.

Last edited by LonelyTraveler; 10-29-2004 at 01:34 PM.

 
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Old 10-29-2004, 06:50 PM   #2
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wood650 HB User
Re: Cystoscopy and other issues

Wow, quite a story. LonelyTraveler you are much too worried about the cystoscope. I think I told you before that I had it done with a rigid instrument in the doctor's office several years ago. It was uncomfortable, but I can't say painful. I had no bleeding afterward and no other effects that I recall. Last year I was put to sleep and one done. There was no bleeding or after effects from that one either. If you need it done, get it done. The doctor may need to see what is going on.

I can't even believe that your wife allowed you to have anal sex with her. I can't imagine my wife saying yes to that.

Levaquin never gave me nightmares and I took it for a month.

I think if your are masturbating every day or even twice a day that it is probably too much unless you have a very high sex drive and need to ejaculate that often. If you ejaculate too much it will make the prostatitis worse as I have told you before. Every other day is the correct rate for me but I am 65 years old. More than that is possible but it irritates my prostate if I do it or have sex with my wife. There is a limit on how much fluid the prostate can comfortably produce.

 
Old 10-29-2004, 10:39 PM   #3
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LonelyTraveler HB User
Re: Cystoscopy and other issues

I might just be tempted to try physiotherapy, however, I'm not sure what type of specialist would deal with something like that or even what procedure he would be doing. I'm already amazed at how well my prostatitis has calmed down ever since I stopped masturbating every day (and sometimes twice a day). Now that I think about it, the last time I had prostatitis I did just the opposite and masturbated like once or twice a week and I got rid of it within a little over a month. This evening was the first time I did it in two days and although I don't want to get too explicit, I will say that I was very pleased that I was able to shoot a mega-load. The reason this is good is because about a month ago when this thing was at it's worst, I was TOTALLY clogged and could only get a few "spurts" of thin liquid out. Yup, that's how bad it had gotten. So anyway, at least the old pipes still work!.

The jury is still out on wether I will keep my appointment with the urologist for the cystoscopy. I was supposed to have one done awhile back but I got scared and backed out at the last minute (which did not please the urologist!) so I don't want to push my luck but still, I'm feeling well enough now that if I did'nt get it, I could probably just survive on less masturbation (until everything heals up) and maybe take some Neurontin (I keep hearing so many good things about it). I'm also still taking the Levaquin and that seems to be helping but I know all too well that lots of people take antibiotics for years and as soon as they get off of them, the prostatitis returns so I have no delusions of getting better without really making some radical changes in my life.

Well, take care and thank's once again for all the help and advice

 
Old 10-30-2004, 06:37 AM   #4
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wood650 HB User
Re: Cystoscopy and other issues

It sounds like you are on the mend. Glad to hear that you have cut the masturbation rate because that was making you worse I think. Give the Levaquin a chance and then follow it up with the supplement you have referred to or ProstaQ that I am taking and keep the prostate cleaned out at the rate it needs--when you hare horny, like every other day. Good luck.

 
Old 10-30-2004, 10:28 AM   #5
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LonelyTraveler HB User
Re: Cystoscopy and other issues

I just wanted to say that I did a search for "cystoscope" and "cystoscopy" in this forum and got a LOT of results and read many of them. From what I understand, a RIGID cystoscopy is (or can be) very painful and bleeding, burning, pain and urethral swelling are *common* side effects - sometimes even requiring a catheter to be left in until symptoms subside. I've read that the soreness can last for up to a month or longer and that it's even worse if they do a bladder distension.

Folks, I hate to sound like a big crybaby but this definately does not sound like my idea of a good time but here's the problem. I would like to call my urologist's nurse on monday and ask her the following questions...

1) Is he actually going to do a cystoscopy in the first place? (I had asked for a prostate massage but I was also told by the nurse that he *may* want to "look in my bladder".

2) Will he be using a rigid or flexible cystoscope?

3) Will he be doing the "bladder distension" thing on me?

4) Will I be placed on a special table (gyno-style with legs in stirrups, etc)?

I want very much to ask her these questions because I feel that I have a right to know what he will be doing to my body and what exactly I am seeing him for so I at least know what to expect. He was going to do a cystoscopy but when I cancelled he got ticked off and told his nurse to tell me to go find somebody else. He has a temper on him and say's this kind of thing if I ask too many questions or take up to much of his time, etc. Anyway, so I called back a few days later and asked his nurse to ask him if I could come in for a prostate massage and when the nurse got back to me later in the day I was told that the urologist told her to make an appointment for me to come in early November. So is he STILL planning to do the cystoscopy or is he just going to do the massage like I requested?. That's what I'm wondering and the reason I would like to call his nurse on monday.

The thing is, this urologist is a very prestigious and wealthy one with a lot of clients and every time I mention his name to someone I hear "OMG...I can't believe how lucky you got...he's one of the top uros in the state!!". Lots of people say this about him. It's like he's famous or something. I am pretty sure that if I ask his nurse these questions, she will run back to him and claim that I'm bothering her like she did the last time and he will call up and chew me out just like HE did the last time. Like I said, he's got a temper on him but because I am on medicaid, he is the only one I have.

So what would you people do?. Would you ask these important (and very reasonable) questions about what he plans to do so you can make an informed decision and know what to expect and risk losing the only urologist within 150 miles who accepts your insurance -or- would you just go in and blindly/obediently let him do whatever he wanted and keep quiet regardless of wether it was painful, uneccessary or might cause you long term complications?. I mean, I've read a HUGE number of posts where people swore they would never go through it again or that it was a complete waste of time or that they were in pain for a month afterwards, etc.

Thank's and sorry for posting so much. I'm just trying to get some answers and reassurances here because frankly, I'd really rather not have this done and I definately think I have the right to ask what exactly he plans to do as well as a little info about how he plans to go about it. I don't think this is so unusual but I can guarantee you that he will get upset and tell me to "go find someone else!!".

So what to do?

Last edited by LonelyTraveler; 10-30-2004 at 10:34 AM.

 
Old 10-30-2004, 11:17 AM   #6
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wood650 HB User
Re: Cystoscopy and other issues

What you have read I'm sure is correct, but I never experienced those things with either of the scopes I had done. Good luck if you have it done. There should be no problem.

 
Old 10-31-2004, 08:18 AM   #7
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LonelyTraveler HB User
Re: Cystoscopy and other issues

Anyone know the answers to these specific questions?. I'm growing increasingly desperate (and afraid) and my appointment is coming up very soon

Thank you very much

 
Old 11-01-2004, 01:09 PM   #8
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JD John HB User
Re: Cystoscopy and other issues

Go for the Cycstoscopy, it aint that bad. I had one oh 8 or 9 years ago when I was in my early fortys. While you are naked for the procedure you will not be spread eagle. You lay flat on a table and yes the procedure is uncomfortable but not unbearably painful. Prior to the procedure a numbing cream/solution is inserted in the urethrea and actually is more uncomfortable than the procedure itself.

 
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