how do you explain your condition to people you know?

[ZR]

Scoobysnacks, Some of the advice you gave me is seconded by a Psychologist I have been seeing.

On a side note I think it is harder for guys that are in there early, mid, and late 20's then the other age groups that have this problem because of the young age and the social activities that come with that age group.

[damien6]

Hi,

Its easy for me because I'm in the Army Reserve so when people say
"Whats his problem?" I just give them a mean look and they f__k off. People are scum, you can quote me on that boys.

Damien

[cjt]

This has been an interesting post to read since I'm pretty sure it's something many of us think about at length. I know I certainly do. For me, its something a couple of friends know about, simply because they were around during the initial stages of me trying to figure out what was going on. But once I learned more about it, it hasn't been anything I've cared to go into at length, so they don't really have any idea what I'm really going through. They just know I don't go out for drinks anymore and when it comes time to order the wine with dinner, well, guess who's having club soda. 'oh, do you still have that thing?', they ask. Why, yes, I do.

More than anything, though, I think I dwell on wondering how one goes about explaining this to a romantic partner, or someone with whom there are possibilities of things progressing if it weren't for this one hurdle. I suppose for those who are already in relationships it's probably a little less awkward, though not necessarily any easier. Coming to grips with this isn't easy, on any level. But you can be reasonably sure, I imagine, that you've got the support of someone who already loves/cares for you and that the possibility that you'll be left in the dust over this challenge is pretty remote. Or so I would like to think.

But for those, like myself, who are unattached and dealing with some of the troubling sexual dysfunction that can accompany this condition, the notion that you're now basically out of the running for any sort of romantic engagement is pretty devastating. Or, at least it is for me. There is this sense that you are now damaged goods, leaving you seeing everything you have wanted for yourself and your life just crumble away. Obviously that doesn't leave one in a great state of mind to begin any sort of relationship, but I'd say that's the general state of things at the moment. And how do you break away so that these thoughts don't chew you up altogether?

So, I'm wondering if anyone has had to face addressing this within the context of a budding relationship? Or even a pre-budding relationship? Are guys out there actively dating, gettin' their groove on, pursuing any of the normal activities that guys who aren't caught up with this pursue? I mean, yes, it would be fantastic to finally fall in love but, let's face it, sometimes you just want to have sex, too, in that free, unencumbered way that you now imagine 'everyone else' must be having it. I have to say I really never was one to be out there on the prowl, playing the field. And I was always pretty stressed about my inability to get Cupid to toss me a couple of arrows . It would seem that this is what all that stress has gotten me.

So, is there hope? Can a single guy realistically work with this so that he's got a chance to wind up with that certain someone who complements his life in that way that makes his head spin? Not too much to ask, right?Just wondering.

[webslave]

There are men with chronic prostatitis who report having sex with their wives on a daily basis, so citing chronic prostatitis / chronic pelvic pain syndrome as a reason not to get sexually involved is not the way to go. Moreover, a good relationship will cope with this problem. Hey, if it's too much for her to deal with, maybe she's not a keeper? Think of it like that.

[Rufus]

Uh... I'm afraid I have to disagree with you WS...
Citing chronic prostatitis / chronic pelvic pain syndrome as a reason not to get involved is precisely the problem for some of us.

Having LUTS is a totally different animal from dealing with sexual pain.
The psychological aspect of it is horrible. Trust me on this. I've been dealing with it and between having pain after ejaculation and peeing all the time I'd take walking around with a bottle or receiving citations for peeing in public any freaking day over the pain I endure with sex...

Fortunately I have a wife that is very understanding and expresses love and compassion like no human being is capable but people like her are few and far between.

By and large you give out some really great advice but I think its a bit silly to discount sexual pain in any manner as it is a direct result of many men leading lonely painful lives.

[webslave]

"Peeing all the time" is not a classic chronic prostatitis / chronic pelvic pain syndrome symptom. Many of us here never had or have had that. However, pain after sex is classic, and while I do not recommend daily sex (although, as I said, some men with chronic prostatitis / chronic pelvic pain syndrome are able to achieve that, proving that chronic prostatitis / chronic pelvic pain syndrome does not lead to a complete removal of sex drive), it is still true that ejaculating about twice a week is better for symptoms than not ejaculating at all. So avoiding sex completely is a mistake.

And deciding that having chronic prostatitis / chronic pelvic pain syndrome puts you "basically out of the running for any sort of romantic engagement" is a self-fulfilling prophecy. It's only true if you decide it's true.

[damien6]

Hi,

I just wanted to respond to cjt's last. I recently met a girl in a club who I told about the thing pretty much quite quickly and she was really, really nice. It was made easier by the fact that I was pretty drunk. Some people can be super. She worked in the mental health area and was really sympathetic, so after a few tears (on my half) we went back to her place and it was pretty good. (I'm getting better at explaining it but its still a bit of a mystery to me. Yes yes you can read the facts but sexual dysfunction is more of an immediate issue for me than pain. It probably worries guys more than girls, which is a bit of a cliché.) Prior to that the last serious attempt at a girlfriend I made was a while back. I didn't know what the problem was back then so when I did get around to talking about it to her what I said was confused and as the relationship was already starting to strain she took the opportunity to get out. I'm a law student and generally law students are too stressed to deal with additional problems, its either great or go. Or at least the one's I know.

I guess its difficult not have sympathy for that approach. I remember back when everything was ok that I found it really difficult to deal with the emotional/whatever problems of others, especially if you're stressed. Learning empathy has been really hard for me so I can't really blame others for not having it. I try to be nice but empathy is hard. I don't want to be condescending, a shit, or whatever. If somebody has a bad story to tell now I want to leave the room. I've been told that given my history I should have more sympathy for others but I generally feel I have less room to store it. I don't think it helps to be sad or whatever with another person.

I guess part of this thing is dealing with the fact that you aren't superman who can do whatever he wants. Maybe its a maturity thing, maybe not. I was much happier when things were hunky dorey. The feeling of "damaged goods" isn't cool but I'm getting over that because this thing is treatable and I've made improvements. Feeling that you have to make amends or radically change your life though is not cool. This has obviously had benefits as I've changed my life substantially in some good ways and I'm generally a more solid and less stressed person but not very happy yet. I find it hard to be energetic or hopeful, yes, yes, look on the bright side but thats how I feel. Don't underestimate the feeling of indestructibility. It may be a delusion but can get you through the fight and make you look forward to the next one.

When people are nice to me, like that girl who I met and am still seeing, to be honest I'm not sure how to take it. I don't think I like it, its sweet but awkward. We're taking it slow, not the superficial bed hoping thing. God the way people can torture themselves in relationships under normal conditions, I love you, I hate you, chase me etc... I certainly don't have time for that.

Positivity is what I miss most of all.

Exercise helps.

Damien

[cjt]

Damien - First off, good to hear that you've met someone nice, with a sympathetic ear to boot. This is precisely the type of situation I was wondering about. It's got to feel good to get 'the stuff' out in the open right off the bat (the first night, even!). Let's hear it for the booze-assisted admission. That is certainly one way to bring it up. Boy, I miss the stuff.

Anyway, I am coming to the realization that getting ahold of this thing has a great deal to do with facing the sometimes fragile human condition. As men we know how we are generally expected to reject weakness, vulnerability, and failure. And we know how difficult it can be to uphold that expectation, even if we would never admit it to even our closest friends. While there will always be those who appear to outwardly accomplish this with ease, for most, maintaining the Superman model on every level simply isn't possible. And who's to say it should be? After all, Superman was practically invincible; he was the ideal, not your regular guy, and not quite human (yet even he had his weakness).

My copy of Headache in the Pelvis arrived and what I'm reading about how this condition is thought to develop, and how we can get at treating it, makes a lot of sense to me. I'm having my own great, illuminating, 'Aha!'. I see that working through this thing requires a certain level of acceptance we might not be all that comfortable with - acceptance that it is really there (no more denying it, my previously preferred tactic), and that it's not going away unless you work with it. That you don't beat it, exactly, but that you treat it. And that treating it means learning to recognize that we are a lot more vulnerable and - I hesitate to use the 's' word - sensitive, than we might care to acknowledge. It means learning to recognize those things that set us off, and becoming aware of when they do - not exactly easy when we are so accustomed to redirecting all that energy away from our immediate consciousness.

Lately, I have been recalling the words of a therapist I saw once (literally, once) who was adamant about driving home the point that life is messy. That nothing, absolutely nothing, in life is perfect and if we insist on perfection we are setting ourselves up for some serious disappointments. And those disappointments can have some pretty far-reaching effects. For someone who struggles a little with perfectionist tendencies, this was a good thing to hear, and I probably need to remind myself of it more often.

So, it would seem then that all is not lost. There just might be a sex life out there yet - and, even better, maybe someone who will be in it for the long haul. No, that does not mean that each day is a welcome and sunny one. Far from it. It looks like there is going to be a lot of work ahead. And while it's difficult to shake the 'damaged goods' feeling, I guess it's better to at least try, instead of choosing to hold on to it. There's the old adage that whether you think you can, or you think you cannot, either way you're right. It's probably good to remind myself of that every so often as well.

And, I agree, Damien, exercise definitely helps. After all, a good, solid, sweaty workout followed by a hot shower and all those pumping endorphins, can send you out into the world feeling like, well, Superman.
--cjt

[damien6]

Hey,

Thanks for the message. Yeah I'll try to get a copy of the book in the holidays, about a month from now. I don't want to get one before then because I tend to crash for a short while after moving to confront it. Even if you come out on the other end much better the process of getting there can be quite discombobulating. Besides this is something that will take time and energy and won't immediatly dramatically alter things, (well that seems to be the gist) so I'd rather do that when I have a little clear air.

Thanks for the reply again, America rocks.

Damien

[boulder]

it is still true that ejaculating about twice a week is better for symptoms than not ejaculating at all. So avoiding sex completely is a mistake.

Webslave, can you provide us with some info to back up this claim? I've been totally celibate for about 6 months now (no sex, no masturbation, "thinking away" arousal when it does occur- nightime arousal is one bit that remains, I think of it as "bruxism of the pelvis":)) and I think it has helped me tremendously. I should mention that my libido is quite low already, which I'm fine with, and I'm fine with abstaining from arousal, it isn't causing me any grief. Sure, I hope to be back up and running someday soon, but what could be the harm in giving my body an extended rest like this?

[webslave]

Unless I've forgotten about a study, the contention is not backed up by research, but it's the common consensus that I've seen stated by sufferers numerous times after personal experience. If you read the archives of this group you'll find a lot of evidence for it. Complete abstinence is associated with prostatic congestion and obstructive symptoms, including a thin, weak urine stream. FYI, chronic prostatitis used to be called "Priests' Disease".

At the same time, tensing the pelvic muscles during ejaculation is associated with an increase in symptoms, so a conscious relaxation of the pelvis during orgasm is advised.

[boulder]

Thank you for your quick reply, Webslave. That's interesting about "Priest's Disease." Hope I don't tick anyone off by saying this, but I'd be willing to bet that priests have just as much- if not more- pelvic floor tension than your average guy. Also, I appreciate knowing about the experiences of others, but so far abstaining from arousal seems to be having positive effects for me, so I'm going to continue with it. As my symptoms improve further, I'm sure I'll ease back into things, but for now I'm going cold turkey. Or, to quote Sylvia Plath, I'm going to give the "old turkey neck and gizzards" a break while they heal!

Well, sorry to derail the discussion, folks! Carry on...

[carld]

Uh... I'm afraid I have to disagree with you WS...
Citing chronic prostatitis / chronic pelvic pain syndrome as a reason not to get involved is precisely the problem for some of us.

Having LUTS is a totally different animal from dealing with sexual pain.
The psychological aspect of it is horrible. Trust me on this. I've been dealing with it and between having pain after ejaculation and peeing all the time I'd take walking around with a bottle or receiving citations for peeing in public any freaking day over the pain I endure with sex...

Fortunately I have a wife that is very understanding and expresses love and compassion like no human being is capable but people like her are few and far between.

By and large you give out some really great advice but I think its a bit silly to discount sexual pain in any manner as it is a direct result of many men leading lonely painful lives.

Getting off topic here, but I have to disagree with you Rufus.

Lower urinary tract symptoms include pain. Not just having to pee all the time. I have luts and the associated discomfort like a burning perineum which I have documented many times in this forum. The burning sensation of your perineum feeling like it's on fire is pain....Either way every man who comes down with CP/CPPS suffers from this condition what ever their main symptom is.

Having to piss all the time and have discomfort can cause major distress in a man's life. Next time you have to piss imagine that urge feeling of having to piss stays with you even after you have emptied your bladder. That feeling is pain and is a hell on earth feeling.

[Rufus]

Hey Carlo,

Sorry for putting it the way I did.
It's just that a fellow sufferer that I know had LUTS symptoms for a good 10 years before it turned into pain in his genitals and through his urethra.
He told me that between the two that he'd prefer just having the LUTS problem. In the end he went ahead with spermatic cord denervation which didn't help at all.

[carld]

Hey Carlo,

Sorry for putting it the way I did.
It's just that a fellow sufferer that I know had LUTS symptoms for a good 10 years before it turned into pain in his genitals and through his urethra.
He told me that between the two that he'd prefer just having the LUTS problem. In the end he went ahead with spermatic cord denervation which didn't help at all.

Copy that G...

I got your back all the way bro. We just have to keep pushing through with what ever we have to do to get well.