Newbie question

[Plato]

Hi all,
I know there's no easy answer to this but thought I'd ask anyway. If one manages fairly well to relax the pelvic muscles, when can one begin to expect relief from the pain? I ask because I decided to get off of antibiotics last week, which I had been on for about 5 months, and the pain was unbelievable (pelvis and urethra)! A week later I'm still in pain but I don't think it's quite as bad as those first two days. The antibiotics, I suppose, had been masking a great deal of inflammation all this time. At least, that's how it feels. At any rate, I've been making a concerted effort to relax the pelvis all day since I first came across the chronic prostatitis / chronic pelvic pain syndrome theory about 8 dyas ago. But until I get better, there's that lingering fear that maybe there's something seriously wrong with me, or maybe I do have an infection (despite being on antibiotics for 5 months . . .).

Sorry if this question has popped up a few times before. I tried searching
but didn't see anything on point.
Thanks!

[scoobysnacks]

If you suffer from CPPS, I doubt you will be able to learn to relax the pelvis in 8 days. It has taken me 16 mos, and it still beats me, meaning it still gets knotted. I then stretch, bath, walk it out. I still have inflammation in the muscles of the pelvis, though is subsiding.

It takes time, I was on ABs for about 12 wks, and still even after all that thought something was seriously wrong, and that I had an infection they couldnt find or culture. I finally let that go, and realized its all muscular, for me anyways.

Probably not the answer you wanted, but the answer is it takes time, probably a year or two to learn this stuff.

Thats not to say some other fellas with a more mild case than me couldnt be better in 6 mos. Maybe I'm a slow learner.

Regards,

Ss

[Plato]

Thanks for your response.
I'm also concerned that I can't try that clinic in California. Did you?

[carld]

Plato, please fill out your profile so we can better understand your symptoms. That way those in this forum that have your symptoms can help you.

Good news is you have found the right place to help you.

Bad news is you have needlessly taken antibiotics way to long in my opinion. So If I were you I would stay away from them. I'm not a doctor this is just my thoughts on what you should do.

First read this forum and learn about the theory of pelvic myoneuropathy and neurogenic inflammation and how it could be connected to CP/CPPS

Get a copy of a "headache in the pelvis" 4th version if you have not done this already.

Read this forum's posts and learn.

Try supplements like any accredited quercetin product or Quercetin

Learn the stretches and the relaxation talked about in this forum

take some Aleve (naproxen) or something like that to help out while you go through your slow recovery, but be careful not to hurt your stomach, follow your doctor's orders for any drugs

Look into muscle relaxers and meds like Uroxatral to help you pass urine if this is an issue.

Check your anxiety levels to make sure this is not a problem and ask questions. There are many here to help.

Find a PT in your area that understands pelvic floor dysfunction

Regards, Carl...

[Plato]

How do you like that Quercetin? I ordered that but have not started.
My symptoms aren't too terribly interesting: pain all through the pelvis and a burning urethra. I initially thought it was a UTI. The urologist put me on antibiotics because my prostate was inflamed, but I don't think he ever verified for me that I had an infection. Other doctors had been unable to find anything wrong, except one treated me for a possible male yeast infection. For all I know, perhaps I did have a yeast infection at first and that's what triggered the clenching. Also, I had had TMJ for about 6 months leading up to the urethra pain, so that's why the chronic prostatitis / chronic pelvic pain syndrome theory caught my attention, because they were calling it "TMJ of the pelvis." I also got the Headache in the pelvis book but am a bit discouraged that I can't make it to the clinic (I'm a poor grad student afterall . . .)
Thanks!

[carld]

You don't have to visit the Stanford clinic to get better. There are posters all over the world that have gotten better with out going there. Dr. Wise told me that the biggest part and the most long term success is the home treatment. Of course the best is to go there learn everything and take it home with you. But this is not realistic for the majority of sufferers. So by finding a PT in your area that understand pelvic floor dysfunction and how it relates to CP/CPPS and learn from there as well and take it home.

Quercetin seems to be helping. Try it it can't hurt you. I'm not a doctor

What's a "TMJ"?

Regards, Carl

[Plato]

TMJ is the TemporoMandibular Joint in the jaw and refers to pretty intense pain people get in the joint when they clench their teeth in their sleep at night. You can get pain from the temple to the chest if you clench your teeth at night. I had that from december 2005 to about june 2006--right when my urethra started burning. So if I am clenching my pelvis, then it looks like the clenching travelled down from my teeth!

[scoobysnacks]

I did go to SP. And for me it was the missing piece. I continue to get better, and my urinary symptoms are abating. I usually pee normal now, after relearning how to do so (took about 3 wks once the area relaxed properly), and now I only have minor hiccups when I begin here and there.

I still am battling inflammation from all the stretching and PT I am doing.

Its not necessary, but for me, it was as I wasn't hitting my deeply rooted internal TPs right at all. Actually, I wasn't even touching them when I did internal work. Tim taught me where they were, and it wasn't comfortable at first, which is an undestatement. Now I can touch my levators, and can barely feel any pain, where once I would have jumped with pain.

I am still battling a few remaining TPs in the perineum, internally, and the external sphincter, which are painful to treat, and usually cause flares lasting a couple days. But, its got to be done.

2 months and a week into the full blown protocol and I have made excellent progress, and for me the clinic, was worth ever cent.

Ill repeat what I've said before regarding the clinic cost. For me and my wife is ended up being about 5,500. If you go alone knock off about $750. I think 99% of us could find a way in a years time to save 2,500 half the amount needed, and charge the rest. A minimum credit card payment on 2,500 is not that high per month. Then when you graduate, pay it off in full. These costs assume you are in the states, I'm sure its more if flying from a foreign location.

Regards,

Ss

[Plato]

Not a bad point about SP. I'll think about it.
Thanks guys for your help.
One more question, can people suffering from chronic prostatitis / chronic pelvic pain syndrome have inflammation at the tip of the penis? That was always the one thing that made me think it was bacterial. I have inflammation at the tip off and on. Not all the time. Thanks again!

[carld]

Not a bad point about SP. I'll think about it.
Thanks guys for your help. One more question, can people suffering from chronic prostatitis / chronic pelvic pain syndrome have inflammation at the tip of the penis? That was always the one thing that made me think it was bacterial. I have inflammation at the tip off and on. Not all the time. Thanks again!

I think that's called referred pain and or inflammation. Webslave and others can say it better then I. But this is a symptom in CP/CPPS.

[scoobysnacks]

Not a bad point about SP. I'll think about it.
Thanks guys for your help.
One more question, can people suffering from chronic prostatitis / chronic pelvic pain syndrome have inflammation at the tip of the penis? That was always the one thing that made me think it was bacterial. I have inflammation at the tip off and on. Not all the time. Thanks again!

Yes, unfortunately, do a search, many many men have, or do have, this as a symptom. I never had this as a persistent symptom, but at times if I gently squeeze the tip it is inflamed, but its certainly referred pain.

Regards,

Ss

[GP2]

Plato,

In my opinion learning to relax the pelvic floor correctly & voluntarily i.e moment to moment realxation is one of the most valuable things you can learn especially if your symptoms are of recent onset. This technique alone can if you practice it diligently prevent the state of your pelvic floor from getting worse forming more trigger points.

Combined with daily stretching & relaxation (oh plus lots of stress relief) you may be one of the luckier guys who prevents their chronic prostatitis / chronic pelvic pain syndrome from going full blown (i.e. nasty pain referring trigger points everywhere). This is my opinion and maybe others but AHIP does back it up arguing that the pain-tension-anxiety-pain cycle is what perpetuates chronic prostatitis / chronic pelvic pain syndrome & takes men's symptoms over time from mild (1 on his scale) to constant and very painful (4 on his scale). You can with this technique & other treatments break that nasty cycle of pain and then begin the slow healing prrocess.

Dont force the muscles just be aware of the pain & kind of settle the pelvis whilst you deep breathe.

Greg

[Plato]

Thanks Greg. When I first came across Dr. Wise's articles on the internet I realized almost immediately that I had been clenching the pelvic floor and that clenching it felt 'natural.' I spent the next two days constantly trying to relax it and, paradoxically, relaxing the muscle actually was quite a mental strain because it kept clenching throughout the day. That was about 9 days ago and I am much more successful at keeping it from clenching. I noticed when I jog, for example, that I can keep it relatively relaxed now, whereas that was impossible a week ago. But the biggest scary thing was deciding to get off of antibiotics, because the pain in my pelvis was unbelievable. I might indeed be one of the 'lucky ones', except the sheer pain terrified me. It's been about 7 days without ABs now and I think I'm feeling better than I did a week ago, but I still have a burning urethra and the feeling that, basically, my ass is on fire! What I thought was prostate pain was really a fiery feeling throughout the rectum and pelvis. However, I recently discovered quercetin and antihistamines (sp?), which have helped fairly well with the inflammation. But part of me is still concerned with getting off of AB's because my urologist was HIGHLY recommended to me be different people, and I trusted him for 5 months, even though he was jsut throwing AB's at me. Do I fit the profile of a chronic prostatitis / chronic pelvic pain syndrome sufferer? There's nobody in the medical field out here in Indiana to give me a proper diagnosis!
Thanks again for being there guys!

[carld]

I still get frustrated when I read a new poster that tells His tale of being on antibiotics for an extended period of time. Granted, I don't see it a problem to try it for a few weeks up to 6 weeks to cover any possible missed cultures and for the ant-inflammatory effect. After that, it's time to get down to pelvic floor muscle dysfunction and stretching it all out and learning how to deal with our internal stress and anxiety which in my opinion is the cause of CP/CPPS. Stress is a killer in many different ways. For us, I think we are actually the lucky ones that have this condition warn us to change our lives and our habits to give us a second chance to do it right, and live up to our fullest potential.

[Plato]

I definitely think this situation is my body trying to tell me something. The last year of my life has been what you might call high stress and highly rigid. I always felt like relaxation was a 'waste of time.' I think I need to learn how to relax!