I sleep great but the days are terrible ... WHY???

[Wolf]

Last year I was diagnosed with chronic prostatitis / chronic pelvic pain syndrome after first being wrongly diagnosed with bacterial prostatitis and feed a bunch of Levaquin I didn't need. What I have noticed over the course of my illness is that the days and nights always go the same. First, I am able to sleep through the night without pain or waking up to urinate. Typically, when I wake up, I have little or no pain. But starting with my first urination and as the day progresses, the burning at the tip of the penis and pain behind the testicles sets in. By the end of the day I am wiped and sometimes have to take a vicadin just to ease my pain. Is this common with chronic prostatitis / chronic pelvic pain syndrome to sleep well and wake up feeling good only to have urinating and daily life bring back the pain? The one thing that seems to help during the day is .5 of Xanax, something I had already been taking for my IBS. I'd love to hear if there are ways to reduce the post-urination pain or simply reduce the pain all around. I can live with peeing all the time, but the pain and burning is making life unbearable.
Thanks,
Steven

[webslave]

Pain increasing during the day is the most common pattern. According to the neuromuscular theory, this is because the hyper-irritable and overtensed pelvic muscle fibres become increasingly symptomatic and the effect on the nerve endings in the lower urinary tract becomes more pronounced as the day wears on.

[CppsDad]

Your condition is very typical as Webslave said. Click the "More Info" link at the top of the forum and read the "New To This Site" section. You sound like a classic chronic prostatitis / chronic pelvic pain syndrome patient, which means you have a good chance at getting better if you follow the protocols discussed on the web site and in this forum. Read a lot of posts too, as many of them will apply to you.

Michael

[Wolf]

Thanks for the quick response. Needless to say it's been a difficult year but finally getting a correct diagnosis and being off the antibiotics has started to help my mood. I'm trying acupuncture this week.

Any advice that can be offered on the best ways to cope with the pain on a day to day basis would be appreciated.

Steven

[CppsDad]

If you have chronic prostatitis / chronic pelvic pain syndrome due to Pelvic Myoneuropathy, then the best things you can do are:

Stretching
Physical Therapy, internal AND external
Relaxation

Take pain killers to get you through the tough early stages. But start helping yourself. This will ease your mind, and probably reduce your pain a little. But you won't experience significant relief until you start treating the source of your pain, which, without knowing more, could be trigger points and referred pain from muscle tension.

And read through as much of this site as you can. I can give you more advice, but it's nothing that I haven't repeated a million times over in prior posts in just the last three weeks alone.

Michael

[winding_road]

Wolf, while some CPPS sufferers do wake up at at night to pee, some other don't.
I don't. Even though at night I keep drinking decaf tea and chamomille and juice, once I fall asleep that's it. And what Mark said about it is the most intuitive explamation. which is a good sign at least that you don t tense at night. maybe some do.

It was horrible fro me in the begining dealing with the pain, but not anymore. Not only because the pain is less frequent, I still feel some kind of dysfunction in my pelvic floor, but I feel better cause I know you CAN BEAT THE PAIN. After I started running, stretching, walk whenever I can, AND AND during the worst days I take valium. which means on average two valiums or 3 a month. Valium is extensivley discussed on the forum, you can read about it, and ask your doctor. But I personally felt very comforted when I knew that there is something that will take 99% of the pain 90% of the time. still for fear of dependance I won't take it for the mild discomfort.

It will be great if you can start as soon as possible exploring the Stanford/Wise-Anderson Protocol ( from stretching to Physical therapy )

good luck bro

[winding_road]

I forgot to say that yeah my symptomps at the start were exactly like you described. so hang in there things weill get better soon. and try to relax. meditation and Yoga were important in my case. Although I don t consider myself a "success story" AT ALL...because of other problems that you will not encounter most likely.

[LightningTree]

Yep, that's how it is for me, too.

Here's an eye-opening little experiment for you. In the evenings, when you are feeling relatively crappy, take a nap. See how you feel when you wake up.

[blacklaw]

Yep, that's how it is for me, too.

Here's an eye-opening little experiment for you. In the evenings, when you are feeling relatively crappy, take a nap. See how you feel when you wake up.

Correct. You would be surprised. I have found that a 20 to 30 minute nap will work wonders.

[ddt1974]

First, I am able to sleep through the night without pain or waking up to urinate. Typically, when I wake up, I have little or no pain. But starting with my first urination and as the day progresses, the burning at the tip of the penis and pain behind the testicles sets in. By the end of the day I am wiped and sometimes have to take a vicadin just to ease my pain The one thing that seems to help during the day is .5 of Xanax, something I had already been taking for my IBS. Thanks,
Steven

You described my urethral burning situation EXACTLY. Wake up with no pain. Pain responds to Xanax. I am beginning to think this is a neurological pain, like a neuropathy. I have to take a vicodin sometimes too, and that works VERY well when I do take it. I am stuck in the same boat, have cystoscopy scheduled for the end of April. I will let you know if any other meds or anything else helps, thanks, Dennis

[LightningTree]

The one thing that seems to help during the day is .5 of Xanax, something I had already been taking for my IBS. Thanks,
Steven

You described my urethral burning situation EXACTLY. Wake up with no pain. Pain responds to Xanax. I am beginning to think this is a neurological pain, like a neuropathy.

My twin brother, who also has this problem, was on vicodin for a quite a while. He doesn't currently need it, I'm glad to report. He also found vicodin to be effective.

I agree with you that much of the pain relates to neurology. Here's a symptom I have. I usually either have pain in the rectum, perineum, at the tip of the penis and/or on the left side of the penis shaft, or on the scrotum. It tends to vary with how I rest my body during the day. But it is always only in AT MOST ONE of those locations. Those four locations just so happen to correspond to the three branches of the pudendal nerve. My pudendal is definitely not a happy camper.

During the early phases of my worst pain, the location of the pain would change hourly, sometimes more frequently, but as it shifted around, it would leave the last location and 'move' to the next. It is as if the pudendal nerve is misfiring, and the branch of the nerve that is identified as carrying the pain signal is spelled out by normal activities (urination - penile pain, sitting in a chair- perineal pain, sitting on cocyxx- rectal pain, etc.) Sometimes this pain follows immediately (urination), and sometimes it takes 20 minutes to start hurting.

I too found that medicines similar to Xanax in a small dosage to be effective. In my case I had klonopin and diazopan. Isn't that an interesting thing that it can help? I did little research on that and came up with two layman's perspective possibilities:

1) Some research claims that Xanax-like drugs calm down the central nervous system and prevent over-firing of pain pathways
2) Other research suggets that muscle-spasm/tension caused pain responds to diazepam and such medications.

All I know is that a Margarita in the evening also helps me. (Where as beer irritates my bladder.)

As to what I believe about this, I donno.

I've found that in my case, a hot shower on the back of my buttox (gluteus muscles) relieves my rectal pain. Stretching also helps releieve my pain on many occasions. That is almost certainly a muscle-relaxation thing, so there may be an interplay between muscles and nerves that is complex, as is suggested by the myoneuropathy theory suggested on the associated web-site connected to this forum.

Furthermore, previous to the onset of chronic prostatitis / chronic pelvic pain syndrome I had had the tip of the penis pain since aqe 12. It only occured after ejaculation, and only when I used my pelvic muscles to try to hold back ejaculation. (I can succeed at this, resulting in a half-orgasm that lets me conitnue having sex, a very addictive behavior, but with a very painful result, for which I would take lots of asprin afterwards.)
The pain from this is a very intense burning pain in the tip of the penis that builds up over the course of 20 minutes and stays around for hours.

Since my chronic prostatitis / chronic pelvic pain syndrome started, I stopped that practice, and no longer have that cause for penile tip pain. In any case, that was basically a problem brought on by my use of my pelvic muscles, but tha must somehow affect the pudendal nerve.

Well, its still a mystery.... Someday, we will figure all of this out and it will be great.

p.s.

Here's some perspective on how little we know:
My twin brother also has CPPS, for the last four years, although at the moment he is doing extraordinarily well. When my twin brother had this really bad, before I had ever had a symptom, he was very much in pain and I didn't understand it. My parents just told me he had a back problem, and didn't reveal where his pain really was until I came down with the same symptoms.

His pain doctor told him that because he was an avid mountain biker, that he had developed pudendal scar tissue, and injured his pudendal nerve. Some doctors even claimed they could feel the scar tissue in his pernieum.

Until I came down with similar symptoms, without knowing that he also had this pain, he thought that he had bike-induced pudendal neuropathy that was idiopathic and based on his bad luck.

I must admit that having a twin to tell me that the worst pain would go away after a while was of great psychological help, something that many people who come to this website do not have. And he was probably greatly relieved to know that he hadn't gone and 'messed up his body' by enjoying bike riding as an adult. (I don't ride a bike.) So I'm keen on providing emotional support on this board, cause I know how hard it is without it, and how it can help.

It is now clear, since we both have the same problem, that if it is pudendal nerve crushing, that it is based on our very similar body morphologies.

But we also both anxious people, and we may just hold our body tension in the wrong place. Or maybe we both carry the same gene for a mild pelvic muscular dystrophy. Or maybe we both have the same auto-immune problems. We both have IBS and I have psoriasis. Maybe its pyridoxine deficiency. I think that taking vitamins improves my days, but I can't prove that.

So be careful, it is easy to let yourself and doctors convince you of a cause and effect for CPPS. Personally, I think the jury is till out, and I just do what I can to help my muscles, based on what I learn on this site. I also avoid sitting, by the way, just to be on the safe side.