Painagain thread

[painagain]

I'm 41 and am new to this site. When I was 27, I got in a traffic jam and held my bladder way, way too long. Two days later, my significant pelvic pain began. I went to a half dozen Uro's, had the antibiotics, etc... nothing helped. The perineum pain was very significant at times, and then not quite as bad at other times. I often felt a burning in my bladder area as well. Quercetin did not seem to help much. This lasted for almost 10 years. Then in 2005, I read about cernilton (rye pollen). I began taking it, and in about 3 months, my pain went away. I continued on the rye pollen at a reduced dose and went for three years with no pain. Two months ago, I held my bladder way too long again and within a couple of days, the terrible pain came back. I've upped my rye pollen again, added Quercetin and bromelain, but it does not seem to be working this time. Additionally, I now shiver all the time - no fever, but constant shivering. That happened to me the first time too.

The reason I tell this story, is because so many folks on this site talk about the cause of their chronic prostatitis / chronic pelvic pain syndrome being continued tightening of the pelvic muscles over time, type A personalities, nerves, etc... While I suffer from the same pain that many of you do, the origin for me is definitely the two times that I held my bladder way too long - I broke something in my bladder or prostate and it won't heal. I'm not type A, not stressed - none of that profile fits me. Is there anyone else out there who brought on their chronic prostatitis / chronic pelvic pain syndrome by holding their bladder too long? Anyone else shiver a lot now? Any thoughts?

Thanks,

[carld]

Welcome to the forum...

Injury can lead to pelvic myoneuropathy...Holding your urine for an extended amount of time could have contributed to the pelvic floor clenching or the guarded state or (tail between the legs) as written by DR. Wise) that could of led to your pelvic floor dysfunction and so forth...Remember that this disease has many faces and personalities.

You may not be aware of inner stress that could be tightening your pelvic floor and clenching with out even knowing. Either way...It can't hurt you to practice the many options we have here.

Please read my starter list to help you...You will recover again...

Best

[painagain]

I would like to know if anyone else can pinpoint the beginning of their chronic prostatitis / chronic pelvic pain syndrome to one specific time when they held their urine for way too long. Also, does anyone shiver a lot since their chronic prostatitis / chronic pelvic pain syndrome began - not so much a shiver like I'm cold, but a bit of a skin crawling feeling.

Thanks

[webslave]

While that may seem to be a key event to you, it most probably was the last straw that broke the camel's back. It is not helpful to dwell on how the condition started.

[Gav]

Hi painagain,

I am pretty sure that holding my bladder while I had a stone stuck in my bladder was one of the triggers for my original flare up. I also know that doing the same thing would exacerbate any symptoms. It is bound to increase stress and tension in the muscles around the pelvis. Using Elavil helped with this and now I do make sure I am not holding my bladder for an extended period of time. This definitely helps me amongst other things.

Gav

[painagain]

Maybe dwelling on past won't help the future, but I imagine that not all of us who are suffering from chronic prostatitis / chronic pelvic pain syndrome have the same root problem. I imagine that pain in the pelvic area can come from any of a number of things. I am simply hoping to find someone else who has had similar onset and symptons. Maybe I can help him, or he can help me. If no one else finds that they shiver all the time, then maybe I have something different than most others on this site. I'm just trying to find answers, and ways to cope with this awful thing.

Thanks,

[painagain]

Gav - thanks for your response. Are you improving with time?

[Gav]

I have no symptoms now. A combination of Elavil, stretching and being sensible about how long I hold my bladder have helped dramatically.

Before the onset I had a bout of kidney stones, with one getting stuck in my bladder over a period of a month causing me to hold my bladder and tense my pelvic muscles to quite a degree. I also had another underlying condition (Ulcerative Colitis) that is more than likely to have contributed to my pelvic myoneuropathy. There is much more to my story than all of that though. I have posted it in the Success Story section.

All the best with your pain and problems, this thing is in the vast majority of cases a muscular problem and this forum is a godsend.

[painagain]

During the day I have significant pelvic pain. But when I am in bed at night, I have little to no pain. Do others of you have the same experience, or do you hurt during the night in bed as well?

[carld]

I believe that most UCPPS cases ease up when resting or laying down because muscles are relaxing. There are some that state it gets worse when sleeping and resting...(That' could be their mind is still going and the true inner stress comes out, there for stress/pain cycle is kicking in.)

But most when vacationing, will have symptoms ease up...all part of relaxation and how important that aspect of our protocol is. So there is a connection here.

Best

[painagain]

Sure makes it really hard to get up in the morning - lying there in little to no pain, knowing that once I am up for a few minutes the pain will set in.

[Jay]

Hi there,

I agree with Carl. Lessened pain when laying is quite typical. It's very common that people feel better right after waking up, and then worsen as the day goes on. Nothing relaxes the body quite like sleep.

I know it's hard to imagine getting up every morning with this, but that's what you have to do. Giving up puts you in a very bad place, physically and mentally. There came a point when something clicked in my head and acceptance set in. Just a sort of 'yeah, that pain hurt just now, but I've been there before' mode. I still work pro-actively to better myself, but my life isn't over. I still find occasion to laugh and have reasonable fun despite the condition.

Try to take a deep breath and find something positive in every day. Thinking is powerful when it comes to any kind of chronic pain, whether or not you believe in the muscular approach. You'd be surprised at how tough you can really be when put to the test.

[atma]

Jay and Carld are both right. We all come here searching for the magic answer or the magic pill or the magic stretch. There is none. You could search for key posts on this site because we all find relief in different ways.

There are certain posts that allowed me to see the light. There is no quick fix and there is no right answer. We each have our own symptoms and our own internal clocks. We heal at different rates performing different actions. It took me "a while" to realize this is a condition that takes a while to understand, an even while longer to grasp how to deal with it on a day-to-day basis, even longer to figure out my protocol for dealing with the chronic pain. And some time longer to mentally accept my fate and "charge in a relaxed way (patent pending by Carld )

By reading this forum for a while, you understand the key to getting better is to realize a slow fix in terms of years, not hours or days. When you can accept that fact and not compare today to yesterday or how potent you were at 18, the mental side of this condition becomes a part of you. Acceptance is key. It reminds me of the movie Backdraft and I think Donald Sutherland is talking about respecting the fire and knowing what it is going to do next. I view CPPS, or whatever acronym you want to give it, as a part of me now. Something I must respect or else it could destroy me. For a lot of us, chronic prostatitis / chronic pelvic pain syndrome took part of our lives away. Accept that and move on, you cannot get those lost days back. However, it does not have to take anymore of it. Once I eliminated the stubbornness, and realized mainstream doctors do not have a grasp on this condition (and many other conditions), I was more prepared to deal with this. Mental acceptance is the most important part of this condition.

If you let it go while you are sleeping, you will not be so accustomed to expecting it in the morning. And as time goes on, the pain creeps up slower and slower and later in the morning. Put together your protocol and began the start of your new life. It is not better or worse, just different. (That is something I told several of my friends when they got divorced and were worried about their kids. They recently reminded me of my own advice.)

Thanks,
ATMA

[carld]

And some time longer to mentally accept my fate and "charge hard in a relaxed way (patent pending by Carld )

Great post atma!

[painagain]

Guys - thanks for the kind and encouraging words. We / I need them. My first bout with chronic prostatitis / chronic pelvic pain syndrome lasted for almost ten years and it was filled with pain. Then it went away completely for 4 years - symtom free for four years - zero pain. Then I triggered it again two months ago and it's as bad as it ever was the first time. I'm just having a real hard time coming to grips with the fact that I'm back there again, and could be for many years to come.