Explaining CPPS

[kevin]

Not related to treatment, but probably relevant to all our lives.

I'm wondering if and how everyone here has explained their chronic prostatitis / chronic pelvic pain syndrome to others. Many (myself included) try to keep the condition secret from all but a few healthcare professionals and close friends. But often it's impossible to do completely: there are certain signs that people (coworkers, employers, friends, girlfriends) can notice, such as frequent trips to the bathroom, inability to focus at work during flareups, not being able to go out or drink with friends sometimes, or possibly avoidance or curtailment of sexual activity with girlfriends. The list goes on.

What explanations have you guys used? So far, I've gotten by on "back pain" for those who have noticed quirks in my behavior but don't need to know the whole deal. I'm going to take a leave of absence soon, and obviously can't leave without an explanation. But I don't want to be known as "the guy with that prostate thing." Has anyone here used an alternate explanation? I'm curious to hear if anyone has come up with a condition as bad as chronic prostatitis / chronic pelvic pain syndrome but not as "scary." (Or, if anyone's just come out and said everything.)

Kevin

[CppsDad]

First of all, chronic prostatitis / chronic pelvic pain syndrome has nothing to do with the prostate, so there's no need for anyone to think you have "that prostate thing". Like you, I have a few levels of explanations depending on how knowledgeable the person needs to be. For my bosses, for whom I need approval for time off occassionally to get therapy, I've laid it all out for them. I do the same for any co-workers I consider friends. For the other people who ask why I have a standing shelf in my cubicle, I tell them I have back and abdominal pain, and cannot sit for long; that goup doesn't get to hear anything with the words "pelvic" or "rectal" in it.

But for the people that need to know or that I choose to explain the whole kitchen kaboodle to, I tell them that I have chronic muscle dysfunction in my lower back and abdominals. I tell them about the PT, and that it even involves some internal work which is why it is so specialized and I have to take time off to get it (my PT is 3 hours away).

But at no time do any of my co-workers think I have prostate problems. They all know it's a muscle problem, and since almost everyone in the office have had their share of back pain, leg pain, and neck pain, they can all relate to my muscle pain, especially when I tell them it is chronic muscle dysfunction.

Besides, I'm WAY OVER being embarrassed by this thing any more. As I've said in prior posts of mine, being embarrassed by this caused me to delay seeking help for almost 1 year, a year that could have been critical for me. Now I just don't care what anyone thinks.

Mike

[londoner]

First of all, chronic prostatitis / chronic pelvic pain syndrome has nothing to do with the prostate

Hang on a minute! I think my chronic prostatitis / chronic pelvic pain syndrome most likely IS a problem with my prostate. Sweeping generalisations!

[webslave]

What he meant to say is that it does not originate in the prostate, although, as we all know, the prostate can and does become inflamed in CPPS.

[londoner]

With respect, whatever the successes of the Stanford/Wise-Anderson Protocol - and I am not arguing with them in the least - noone has yet proved to me that the root of certain people's problems does not lie in their prostates. Sure, the illness has to come from somewhere but I'm not yet convinced the prostate in certain cases ISN'T the primary seat of the problem. I'm not saying it's bacterial, I'm just saying the prostate, like any other human organ can get sick or malfunction. Certain urologists who seem to be highly regarded on this site say as much too.

I apologise to Kevin for the detour from his original posting here but I am a bit allergic to sweeping generalisations when, let's face it, we don't know everything about everything.

As for explaining about chronic prostatitis / chronic pelvic pain syndrome I really take my hat off to Mike for his honesty and determination not to hinder his condition through not being open about it. I myself have not managed to do this very successfully with everyone. I sometimes just can't be bothered explaining apart from to close friends and family.

[webslave]

I disagree with you, also respectfully. There is such a glaringly obvious confluence of signs that we as a patient group exhibit, especially histories of high stress and anxiety, that it seems nonsensical to say that the problem may originate in the prostate gland. This is a whole body phenomenon. Our brains, spines, pelvic nerves, pelvic musculature, and genitourinary systems (bladder, prostate, urethra, penis, epididymides and testes) are all involved. There have been so many careful biopsies and studies of the actual prostate gland in a futile search of the cause of this syndrome that it is crystal clear to me that the prostate is not, and cannot be, the seat of the etiology. In some men the psychogenic factors may be superseded by preceding trauma to the area, or the other precipitating factors mentioned in this definition (infection, allergy etc), but my guess is that the majority of cases is caused by psychogenic factors (anxiety, stress, OCD, Generalized Anxiety Disorder (GAD) etc).

[londoner]

Fair enough. I agree with pretty much all of that. I wasn't saying that the prostate pain/ trouble didn't have a cause. It obviously does.

[hgtdazza]

the last time I actually saw my doctor and he checked a urine sample he said I had a very bad infection which had high blood and puss in. I mentioned to him that I was also suffering with a lot of pelvic floor pain and he said prostatitis can trigger pelvic pain. maybe its because I'm very stressed with the prost and thats making the pelvic pain worse???? on that point one strange thing that happened when I had the test and I wonder if anyone knows why? a few weeks back I had the usual infection feelings... very bad but I couldnt see my doc so saw his nurse who is very good. I explained my symptoms and she texting my wee and she said no infection. even sat and explained what and why she was doing as I was in a bad way. she said to bring another sample with me on monday when I was booked into see my doc. again hes a very good doc. he tested it and said it was very badly infected. full of blood and puss, a dodgy colour and smelt a bit. one thing I'm confused about is I felt a lot better on the monday and it was bad, but on the fri I was in a bad way but was clear. anyone know why?
thanks
daz

[webslave]

Doctors often say that you have an "infection" when they see pus cells (dead white blood cells) in your urine. In actual fact, pus cells denote inflammation, not infection.

[CppsDad]

As far as you commending me on my honesty, I don't recommend that this be the course of action for everybody. I only told people that I thought would be ok hearing that I have pelvic pain. But I doubt this is the appropriate approach for everybody. The majority of people think I have back pain and that's it.

Mike

[conradin]

"I have a disease called pelvic neuromyopathy...that means my pelvic nerves and muscles are all screwed up, possibly because of auto-immune problems but nobody knows why. In any case anything, muscles or organs, below my navel will have a flare up in pain and malfunctions. Since the majority of the nerves and muscles are pelvic related, I cannot sit down long term, and that's why I need to stand up when I play with yall..just let me stand towards the back so I will not look odd".

This was what I said to my orchestra.

[latte]

A few of my friends know about my chronic prostatitis / chronic pelvic pain syndrome but most of the time no one asks me about it. They just forget I ever had it I suppose. Now that mine is tolerable I have taken on a new attitude. My wife says "you're not dieing! Its not the end of the world" and in a way she's right. I am not dieing, it just hurts sometimes.
I agree with Webslave, its a total body experience. The prostate may show signs of trauma: bogeyness, edema etc. but mine started long ago with chronic anxiety and muscle tension. Over many years it just started screaming at me so I would listen and do something about it. It just took a few years to figure it out.

[blacklaw]

A few of my friends know about my chronic prostatitis / chronic pelvic pain syndrome but most of the time no one asks me about it. They just forget I ever had it I suppose. Now that mine is tolerable I have taken on a new attitude. My wife says "you're not dieing! Its not the end of the world" and in a way she's right. I am not dieing, it just hurts sometimes.
I agree with Webslave, its a total body experience. The prostate may show signs of trauma: bogeyness, edema etc. but mine started long ago with chronic anxiety and muscle tension. Over many years it just started screaming at me so I would listen and do something about it. It just took a few years to figure it out.

You know.....thanks for that post...lol....sounds like the standard conversation my wife and I have everytime I have a flareup. As for my office, I have been working with my staff for 10 years. We are like a family, they all know that I have chronic prostatitis / chronic pelvic pain syndrome and they know that I have to stand a few times, walk around, etc. At this point they have basically forgotten about it. Now, since 85-90% of my symptoms have waned (still have some pain in the penis, and weekness in my legs). They only noticed when those symptoms flare up as I become a bit short tempered.

[CppsDad]

The "you are not dying" strategy of dealing with chronic prostatitis / chronic pelvic pain syndrome doesn't work well for me. When you are in the middle of a bad flare up, thoughts like that don't mean anything. Sure, you aren't dying, but you ARE in a lot of pain, you ARE emotionally drained, and you ARE weak and tired. I got my wife to stop telling me that years ago. Now, when I'm not in a flare up, sure, I can add some perspective to the whole situation and not feel so bad for myself. But during a flare up, philosophical discussions about what's worse, death or a testicle feeling like it's being split in two are just not helpful. It's just a rhetorical question that makes you feel even worse and more guilty for having this condition and affecting others. That's when I want people to leave me alone and let me form my own judgments about how bad things are. But since I'd rather not be alone, it's better if no one says stupid stuff like that at all.

Michael

[robertpagen]

It is great that there is a forum here where we can discuss these things. For a long time I had felt very alone with this disorder. You are right that I did not even know how to label it to myself or others. How one labels it (sickness, disease, disorder, etc) really effects outlook.

Robert