my story

[mikeDC]

Hi everyone,
First, I really appreciate all the information I've gained on this site, although in truth, it does get me depressed to say the least thinking I'll have this forever.
In a nutshell, I'm 29, and have had chronic prostatitis / chronic pelvic pain syndrome for about 6 months now. Although doctor couldn't do a prostatic secretion, three 10-day rounds of Levaquin and another of Flomax didn't fix what back then was some pretty strong pain in the pelvis, and frequency/burning. I spoke with Dr Wise and bought Headache in the Pelvis. The theory made sense to me, so I set an appt with a PT in NY he said is the best in his Protocol. Thing is, I didn't have any pain re-creations when she internally palpated my muscles. I've even gone back another time (and have scheduled yet another for later this week), but I wonder if I even have the trigger pts. My symptoms have shifted, so now they're mosly in the perineum - pain can be pretty bad on sitting - and some tightness in the front pubic bone, yet the frequency has somewhat diminished, at least to were I only have to go shortly after a drink... used to be that I'd be going once every hour or so whether or not I had something to drink.
On top of that, I have ED.. and here's where I should note that I brought this on myself by a conscious, stupid act.. basically, while I love women (and, for better or worse, still have a pretty strong libido), I put the limit at intercourse. But when I turned 28, for a host of reasons, I lost my virginity to an old girlfriend. Thing is, I couldn't feel sex with a condom on. and even oral sex, which would be great from her before.. couldn't feel it. but when we did have sex w/o condom, I would at times constrict my muscles at the pt of orgasm to not ejaculate.. for those of you saying 'what the hell did you do that for?', I know, because I say that everyday and probably will until the day I die. Week or two after we stopped seeing each other, I tried it with someone else and couldn't enter.. Nine months later I got CPPS... My question is could that have been related even before I got the condition? Did I do nerve and blood vessel damage with that? All doctors I've spoken to think it's in my head, and so does Dr Wise (those who've read his book know he thinks ED when a person has chronic prostatitis / chronic pelvic pain syndrome is all psychological), but while I can still get an erection fairly easily, it's not firm and doesn't last, and I've tried a couple of times since and can't have intercourse. Are my muscles screwed up? I've read the debates on this forum about doing kegels or not - and there's good evidence to show it would help, but I don't want to exacerbate the symptoms.

Basically, I just try to do my stretches, and eat right. Any accredited quercetin product didn't seem to do much for me though. If anybody has any thoughts, I'd appreciate them. Sorry for rambling on..
Mike

[webslave]

• Your behaviour (prolonged celibacy, ejaculation suppression, intercourse anxiety) shows a highly anxious and somewhat obsessive personality. Unfortunately, that is your biggest enemy and is almost certainly underlying your pelvic pain.
• Ejaculation suppression by tensing your pelvic muscles to an extreme degree is probably the trigger that started the nerve/muscle cascade leading to pelvic pain syndrome.

I suggest seeing a doctor to get a prescription anti-anxiety medication and a course of Ultram to interrupt the pain cycle, changing your sexual habits so that you never tense your pelvic muscles during any sexual activity, and making sure you have regular ejaculations (2x a week is average) using masturbation if necessary. Give yourself lots of time to recover. It may take a few years. Look for small improvements over months, not days. Nerves are very slow and difficult to heal, and once they have been damaged by misuse (for example, as in RSI), they can easily become re-damaged or symptomatic again if treated badly. NEVER use your pelvic nerves in that silly way again.

[CppsDad]

Fears that you have permanently damaged muscles or nerves are common for those of us with CPPS. The good news is such permanent damage is unlikely. Like many sufferers, overuse of the muscles in some way has contributed to our CPPS. But this is reversible, although it takes time. As Webslave as pointed out, you must first interrupt the pain cycle, then keep it from coming back. You must also get your muscles in a place that they can start healing, by increasing blood flow and ridding them of any trigger points. After this, you have to hold on while everything heals. And as Webslave says, your muscles are prone to irritation at this point, so you have to be careful.

Regarding your therapy experience: trigger points can be a subtle thing. Not all of them jump out at you. I also believe that some trigger points are hard to reach, or don't show up until you broken through tougher muscle tissue above and around them. Also, I think tight muscle bands can be responsible for pain too, but many therapists wouldn't classify these as trigger points. But tautness in muscles can restrict flood flow too, and potentially cause pain. Either way, serious therapy and stretching can help these muscles heal, and this is what you need to keep doing. Relaxation will help them from tensing again, as well as your lifestyle changes.

It's my own personal opinion that a lot of ED problems are caused by some of the very same things that cause CPPS. Blood flow restriction is probably number one on this case, and trigger points affecting nerves is right there too. Look at your chronic prostatitis / chronic pelvic pain syndrome and ED as one problem, and treat it all vigorously, without remorse for your own pain.

Hang in there. You won't have these symptoms forever, although you probably will have to be aware of your body in more detail for the rest of your life.

Michael

[lookouth]

I'd be wary to give the advice that you should ejaculate 2x a week, I know for me I can just sustain once every week or so without exacerbating my symptoms. Find what is right for you.

[mikeDC]

Thanks for your responses all. And webslave, you're right, it was quite foolish to be sure, but that's just the guilt factor in me, I guess - ie. religious injunction against wasting semen. Hadn't been the first time I had constricted like that, but it probably kicked it up a notch in my pelvis after the intercourse..
And Michael, I hope you're right about it ED and chronic prostatitis / chronic pelvic pain syndrome being connected.. I was worried I had popped a blood vessel or something like that, but uros just dismiss that. One recommended a sex therapist/psychologist type.. probably a good idea.
As for the ejaculating 2x a week, I think I'm holding off on any of that for a while.. it only causes pain. I would feel the pain afterwards even before chronic prostatitis / chronic pelvic pain syndrome came on, but I thought it was normal. I just didn't see the signs.
Thanks again.

[CppsDad]

Mike,

Read my success story. Pain before, during, and after ejaculation was one of my worst symptoms. I held off on sex for 9 months or so until I started doing therapy and was able to return to it. All I found during my abstinence was that it helped in the short term to reduce a flare-up, but it didn't help long term. Only working at therapeutic techniques helped that.

And regarding your doctor's suggestion to see a psychologist... there's something to that. chronic prostatitis / chronic pelvic pain syndrome is as damaging to your emotional and psychological state as it is to your physical state. This burden on your psyche no doubt worsens all symptoms, and can be as much a factor in your condition as the physical part. So definitely pay attention to this aspect. For me, taking action for my chronic prostatitis / chronic pelvic pain syndrome via the Stanford/Wise-Anderson Protocol was a HUGE boost emotionally, and you may see some benefits just from that.

And regarding the connection between chronic prostatitis / chronic pelvic pain syndrome and ED... this is just speculation on my part. Men's Health magazines have advocated for years to do routine excercise to keep erectile function high, and this no doubt stems at least partially from the fact that better blood flow in the region enhances muscle performance. I hope I'm right on that connection for your sake.

Give yourself a full 6-12 months of serious stretching, relaxation, physical therapy, and massage (do therapy on yourself if you can't afford a professional - just make sure to learn how to do it correctly). After that, see where you are.

Mike

[webslave]

I'd be wary to give the advice that you should ejaculate 2x a week, I know for me I can just sustain once every week or so without exacerbating my symptoms. Find what is right for you.

A congested prostate can itself be a cause of pelvic pain. Prostatitis is common in celibate priests and used to be called "the priest's disease".

Many urologists believe that extended tumescence without orgasm can cause congestive prostatitis, an extremely painful condition of the prostate gland. Among other things, the prostate gland secretes the clear fluid which is the vehicle for the sperm in male ejaculate. When not in a state of sexual excitement, a normal male's prostate will cook up about one-tenth to four-tenths of a teaspoon of prostatic fluid a day. This ordinarily drains into the urinary tract and gets excreted. During periods of sexual arousal, however, the prostate kicks into overdrive, churning out 4 to 10 times as much fluid as usual--far too much, some say, to pass into the urine quickly. If the man fails to have an orgasm, the stuff backs up in the prostate and causes congestion. In younger men this is often characterized by pain in the pelvic area. Other causes of congestive prostatitis include an unusually volcanic session of lovemaking, in which repeated orgasms within a short time can overload the system. Some doctors say any sudden change in your sexual habits, whether it's sex followed by abstinence or vice-versa, can lead to prostatitis. Still others say long-term abstinence all by itself will do the trick (hence the expression "the priests' disease").

the guilt factor in me, I guess - ie. religious injunction against wasting semen.

If you are concerned about the religious aspects of masturbation, read this: http://www.solotouch.com/res.php?t=a&num=19

[Dj Smitty]

hmm, so if that's true about a congested prostate, then the opposite could apply as well.....too much masturbation/sex over a long period of time? This may surprise certain people, but I often have (or had....not so much any more unfortunately) to have an orgasm and not lose my erection, enabling me to have continuous sex for a lot longer than any of my friends could admit to. Even after two rounds, I could have a third or fourth in a night.....sometimes even a fifth or sixth, though those were rare. I never wondered whether having six orgasms in 5 hours was bad...but maybe it is? I'll come out and admit it, but I'd say that since I was 13 or 14, my average daily masturabtion is at least once per day, but usually 2 or 3.

I don't see that declining these days either! I'm still as horny as ever, despite having some mild and intermittent pain in the perineum upon erection. Maybe I've just put too much stress on the prostate over time.

[CppsDad]

DJ, I'd venture that chronic muscle tension is more of an issue for you than a congested prostate.

[lookouth]

It would be presumptous, I believe, to diagnose Mike with a congested prostate, something which I distinctly remember being rebuked in AHIP and on this forum as being an anchronism and a misguided stab in the dark by urologists at the cause of Pelvic Pain. Indeed, Wise dismisses the claim that one should increase the frequency of ejaculation because the 'prostate is backed up' when experiencing pelvic pain symptoms- if anything he says ejaculation should be decreased until underlying factors can be properly indentified (in most cases it is muscle tension), and you become comfortable with your own personal schedule. I blame continued frequent ejaculation, out of ignorance, during the early stages of chronic prostatitis / chronic pelvic pain syndrome to many of my bad habits/trigger points now.

[webslave]

Prostatic congestion is not a fantasy, it actually occurs, as any uro will tell you. Boggy prostates with engorged blood vessels are quite common. Moreover, I have read hundreds of messages from men who find that regular ejaculation to "clean out the pipes" is a good strategy for avoiding pelvic pain. Yes, it may cause a small flare for a few hours to one day, but the longer term results are good. You can also prevent the short-term flare by relaxing pelvic muscles at orgasm as much as possible.

[Dj Smitty]

DJ, I'd venture that chronic muscle tension is more of an issue for you than a congested prostate.

i meant the opposite...not congested but rather stressed and overused.

[CppsDad]

That's what I meant too. Chronic overuse is more likely your issue. At the very least, I'd correct that potential contributor before worrying about any other factors. If you get a stomach ache eating french fries, stop eating french fries... and see how that goes before scheduling the gall-bladder removal.

[mikeDC]

Thanks for your responses guys.
I just started a new job that I've basically been preparing for my whole life and it's so damn hard to concentrate with the perineal pain when I sit. I even bought one of those theraseats for $90, but it didn't really help. And then I get this full, inflamed feeling when I stand for a while, right in the front, around my belt area, even though my pants aren't really tight. Is that part of it?
Even after all the searching and reading I've done on the web, I'm still not sure what's happening in my own pelvis.
Thanks again. And good luck to all of you.
Michael

[CppsDad]

You could have abdominal tightness and trigger points. I get pain in front a lot. I'd definitely look into the Theracane, and start working things out. You might find that a good portion of your pain is well within your reach to solve.

Mike