New kid on the block here :-)

[GoatWhisperer]

Hi everyone:)

I stumbled onto this site in my search for prostatitis treatments some time ago and bookmarked it. I'm glad I did because it looks like a great resource and I look forward to meeting you all and making friends along the way.

Having said that, I am a 42 year old male and this is my second bout of prostatitis. I had my first one over a year ago and it cleared up eventually but was difficult to treat because it kept coming back. This time around, I was put on Cipro (500mg 2 x daily) for 2 weeks, then Cipro XR (1,000mg 1 x daily) for 3 weeks. After all these meds, I was starting to feel 90% normal again but sometime during the second week on the Cipro XR, I began to experience muscle aches and pains that grew to be quite severe. I called my urologist and he said I could discontinue the Cipro Xr and to just "play it by ear".

Well, would'nt you know that within 3-4 days, the prostatitis started to come back and I was like "here we go again!". So, I went back on the Cipro XR but it was useless at this point and so I got a 30 day supply of Levaquin (500mg 1 x daily) and have now been on that for 5 days. I have tried hot sitz baths, prostate-massages (semi-sucessful) and saw palmetto and all with limited success. I also masturbate daily to drain myself but when I ejaculate, I can feel a burning/cutting/scraping sensation as if I'm ejaculating sandpaper. Then, for a day or two afterwards, it feels like I have to have a bowel movement (I guess because my prostate swells up?). My prostate feels congested too and every once in awhile I get this weird feeling like a tiny drop of urine or something is leaking out from my prostate and going down my urethra. Anyway, this has pretty much been par for the course for me for the past month.

So does anyone else here get that bowel-movement sensation after masturbation?. Does it feel like you are sitting on your prostate when you sit down?. Anyone else here had success with self prostate massage and are there any tips you can give me as to how to do it correctly?. And finally, how long does the normal bout of prostatitis usually last and why is it that the meds I've been on seem to have such a very limited affect and is there any way I can improve my condition?.

Well, sorry for all the questions and thank you all for giving me the opportunity to share!

Whoops - I forgot to add that in the beginning the urologist did a prostate massage and looked at the EPS (expressed prostatic secretions) under a microscope and then came back and told me I would need to be on antibiotics for a LONG time. I was in so much pain at the time that I was literally writhing on the floor like a snake and could'nt sleep. In the beginning I also had a sharp decrease in the amount of ejaculate (not sure if this sounds familiar or not but thought I'd throw it). Does all this sound about normal for prostatitis?. It just seems to keep coming back with no end in site and the thought of having to "just live with it" scares me because I can't imagine being like this for the rest of my life.

[scotsman]

I also masturbate daily to drain myself but when I ejaculate, I can feel a burning/cutting/scraping sensation as if I'm ejaculating sandpaper. Then, for a day or two afterwards, it feels like I have to have a bowel movement (I guess because my prostate swells up?). .... So does anyone else here get that bowel-movement sensation after masturbation

Try cutting down on the frequency of ejaculations - for a lot of sufferers doing it daily just increases their symptoms. For me, for example, twice a week works best.

Does the 'prostate swelling' feeling feel a bit like having a golf ball up your backside? If so, then it's 99% probable that it's not your prostate at all but a muscle dysfunction. Have a read through this page and the various links leading from it: https://ucpps.men/chronic-prostatitis-is-a-psychoneuromuscular-condition

...urologist did a prostate massage and looked at the EPS (expressed prostatic secretions) under a microscope and then came back and told me I would need to be on antibiotics for a LONG time. I was in so much pain at the time that I was literally writhing on the floor like a snake and could'nt sleep.

Have a read through this thread for info on infection and antibiotics: viewtopic.php?t=1095

Btw - be very careful with self prostatic massages.

Richard.

[GoatWhisperer]

Wow Scottsman, those articles were very helpful - thank's!:). Although white cells were found in my EPS, leading one to believe that my infection was bacterial, it would seem that if it was indeed bacterial in nature, the numerous courses of powerful antibiotics I have been on would have cleared it up...but they have only done so minimally. That is why I found your link to the Myoneuropathy site so fascinating. Yes, it does feel like I have a ball up my rectum and it also feels like my entire prostate gland is just sort of sagging down into my colon. Very uncomfortable to be sure!. Unlike what I hear from so many prostatitis patients, I DO NOT have any pain in my perineum (the area between my scrotum and anus). I can push hard all over my perineum and it does not hurt but further up toward my back, it is sore. In fact, since it was further up, I suspected seminal vesiculitis but I have zero symptoms for that.

The other thing is, I have been a programmer and graphics artist for 8 years now and I practically LIVE at my desk which means the only time I'm not sitting is when I'm in bed. Here's what it feels like exactly. Let's say that I'm sitting bolt upright in my chair. No pain to speak of. But now, I lean back on my tailbone just a bit and thatis when I can feel a soreness deep inside my rectum. The further back l lean, the greater the soreness. I also felt this same soreness when I gave myself a prostate massage yesterday and went w-a-y up my rectum (about 3-4 inches) with a wand.

So I'm stuck between what the uro told me over a month ago (white cells in my EPS) and assuming that has cleared up by now, the possability that I'm just experiencing residual pain - or - Myoneuropathy from sitting all these years. the one thing that seems to ease my pain and discomfort more than anything is Lorazepam (a benzodiazepine) so maybe it is a pelvic flor spasm and the tranquilizers simply "calm" the muscles there down a bit. I've also heard all kinds of success stories with Neurontin.

Once again, thank's so much for those links (they will get read for sure!)

[chewymix]

The tail bone is held in place pretty much by muscles - There is every possiblilty that as you lean back you are stretching those muscles causing them to cramp and burn - This could be the pain you feel. My pain wanders from low back to tail bone to perineum to groin so if you look st your muscles I'm sure that you'll find a solution to your issue.

[GoatWhisperer]

Good point chewymix. Well, I'm thinking about trying Neurontin to see if that helps at all. I've never had any burning to speak of. It just feels like I have a golf ball (or some type of object) in my rectum so when I'm sitting, it often feels as if I have to have a bowel movement. This feeling is worse when I lean back in the chair.

As an aside, we live in Florida and all during the hurricanes I slept basically sitting up in a chair for a total of about 20 days due to the fact that my bedroom had a huge rotten tree limb hanging over it and I did'nt want to take any chances of it crashing though and killing me. So anyway, that's 20 days of sitting right there in addition to all the sitting I do every day and the sitting I've done for a LOT of years but then recently I got into the bad habit of falling asleep in front of the TV on the HARD floor and this has gone on for 4-5 days now so these things might be contributing to how I feel.

However, the funny thing is that the urologist did find white cells in my EPS and I did have prostatitis a year ago and this is'nt the first time in my life I've ever slept in a chair or on the floor so who knows what's causing this disorder. It's very frustrating indeed and is causing me a great deal of depression and anxiety as I'm sure it does for others as well.

[chewymix]

Yeah - the golf ball thing seems pretty similar to everyone, For me that was one of the first symptons over 2 years ago now. When it first started it freaked me but over the years it seems to have faded and I don't really feel that. I sometimes get it bit but not like I did. Interesting sometimes I'm sure I can feel the muscles in my pelvis 'squirming' sbout a bit or suddently cramping and then releasing. Meybe this is just me being able to identify symptons better now that I could when it first started.

Currently my hamstrings, shoulders and neck are also killing me so I'm going to see a chiropractor to see if they can 'straighten' me out or something. Tension in the pelvis can cause tension everywhere it seems which makes sense to me.

[scotsman]

Yeah - the golf ball thing seems pretty similar to everyone

The golfball sensation was one of the first things to go after getting PT for triggerpoints.

Richard.

[GoatWhisperer]

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. To balance it out, I also read (up above) 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 the stricture issue here - although I'm not exactly sure what a "PT" is. 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.

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.

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.

[scotsman]

PT stands for physiotherepy. The book A Headache in the Pelvis is a must read.

Frequent masterbation/orgasm exacerbates the symtoms for most people. I find that twice a week works for me.

My uro wanted to do a cystoscopy and anal ultrasound but I decided to investigate and try out the physiotherepy approach (after finding this forum and buying 'A Headache in the Pelvis) before doing any invasive proceedures. Note though that most people have cystoscopys with no resulting complications. Wasn't the right option for me though.

Richard.

[GoatWhisperer]

The main dilemma I find myself in is that I would like to avoid the cystoscopy at all costs but I would be greatly in favor of a trans-rectal ultrasound or even what you mentioned (physiotherepy). If I thought I could get away with it, I'd call his office up tomorrow and ask the nurse to ask him if he could do this procedure but as usual, he would just say "come in" without giving me any insight into what exactly I was "coming in" for. I need for him to say "yes, I can do that for you" before I drive 40 miles north (and back again).

I've already had to cancel my cystoscopy once (I made up an excuse out of fear and because I wanted to educate myself better before consenting) and that made him angry so if I cancel a second time, I imagine I will lose this urologist altogether because he will think that I am simply playing games with him rather than being sensitive to my fears over the procedure. What would you folks do?. How would you handle this delicate matter?. He's the only one around who will accept my insurance so it's either him or I suffer.

Anyone here had luck with Neurontin and what side effects (if any) did you experience while on it?. Also, should I have the cystoscopy done or are there other alternatives or other specilaists I can see for this (other than a uro)?. Sorry, I'm getting desparate here.

- Thanks

[HS73]

I took Neurontin for about 3 months (not sure, I forget), can't say if it helped or not, but my symptoms were greatly reduced pretty soon after that. It's been about four months since I quit taking it and I'm still maybe 95% better than a year ago, so perhaps I was getting better anyway. It caused a slightly spaced out feeling, I think, at the beginning, at least...

[Ginty]

Hi GoatWhisperer (Cool name!),

Go for the cystoscopy if you're the kind of guy that worries a lot about your symptoms - it can put your mind at rest and rule out some more serious conditions.

Otherwise might be worth following Scotsmans approach.

Personally I have had two cystoscopies, one conscious and one un-conscious, and I can at least tell you that its nothing to worry about.
It's a bit umpleasant but not that sore - I've recently embarked on physiotherapy which is probably more painfull than the cystoscopy, and many men on this forum regularly go for this.

Needless to say nothing was found with either one so it was essentialy a waste of time.

The conscious one was a bit embarrasing but the nurses are totally professional and minimise any awkward feelings - believe me I am self conscious about being naked and I got through it. Really if you decide to go for it you will be fine, just remember you'll never see any of the nursing staff again in your life.

All the best,
Stephen

[GoatWhisperer]

I might just be tempted to try scottsmans approach, 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 stll 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 son 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:)

[GoatWhisperer]

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?

[webslave]

You are perfectly entitled to ask the questions. Do so.

For newbies wanting to know what a cystoscopy is: