I'm new, here is my story

[chrisjiujitsu]

I have been dealing with chronic prostatitis / chronic pelvic pain syndrome for about 4.5 years. It started when I was a sophmore in college and had a UTI enlarge prostate. I was a very poor college student from a poor family and lost my access to medical insurrance quickly but did recieve some treatment before that happened. The treatment I recieved was alpha blockers, valuium, soma, Flomax, sitzbaths, and more ejaculation. I had one session of physical therapy that mostly showed me just stretches and very little kegels. Of all these the sitzbath and small amount of PT benifited the most. Over the course of a couple years, the pain had migrated. It was origonally only located around the base of the penis. About 3 years later, it wasn't there at all or not noticably, but more so around the rectum/perinial area. I would sometimes get visual spasms above my pelvic bone that could be going all day. These were painless but I kind of liked the feeling that I wasn't crazy and had some visual evidence. Since I have graduated and started getting more medical attention the only real difference is a large increase in PT. I have two units that I use but they mostly involve doing measured kegels for about 30 mins a day. I had done some biofeedback. The Kegel muscles had measured as weak and tight on the machines. Once this was corrected, I still only got moderate releif.

So currently I have been doing this treatment.

1000mg naproxen daily
30mins (40-45mins lately) of kegels
5 mins of stretching(4 mins) and diaphram breathing(1min)

I know I would benifit from sitzbaths, but I dont have any practical way of doing this. The bathtub will just be uncomfortable (I have a sensitive back). I posted a message in the muscle spasm treatments forum about heat treatments.

My pain is mostly when I stand, or have anxiety/tension. I am considering treatment for anxiety but just hate taking those drugs.

I stoped dating entirely and have no social life.

Although my treatment so far has helped, I dont think this will make all better.

An ideas are appreciated.

[healthyforlife]

1000mg of Naproxen is strong stuff. I hope your doctor knows what he's doing. You should not be taking Naproxen or any antiinflamatories in high dosage for long periods of time. You risk damaging your stomach if you do this.

Do you know if you have bacterial or non-bacterial prostatitis? You said you had urinary track infection. You may have had to take a course of antibiotics for two weeks to eliminate the bacteria. Did you do that?

If possible, switch doctors. Go to a urologist, not just a general doctor. Should check post-prostatic message urine and semen culture for bacteria (not particularly effective but worth a try). Also, you may be recommended to go through a cystoscopy and urodynamics to rule out cancer/tumor, urethral stricture or other physical abnormalities. Only a urologist knows how to do this!!!

I feel the same way about dating. Can't date coz I am afraid of flare-ups. If I have flare-ups, I can't maintain a relationship .

Hope this helps. Good luck.

[chrisjiujitsu]

Thanks for reply.

And yes, I did all that. I have the nonbacterial one. I had a coarse of antibiotics and they could not find any traces of an infection. I even got scoped (camera down the pee-hole). Despite not seeing any infection, I still went through multiple cycles of bactrim. But I am done with antibiotics now and know I have the nonbacterial problem.

I know naproxen can cause ulcers and what not, and I am going to cycle out anti-inflamatories to long term side effects. I have been on them for about 3 months at that dosage.

I am currently looking for a new urologist in the cincinnati, ohio area.

[scoobysnacks]

Chris,

I am from Cincy my man. Anyways, my uro is Dr. Lawley, he is in Maineville, he is familiar with this condition. I woudlnt say an expert, but sympathetic nonetheless.

My PT that I went to numeroud times was Kathlenn Novicki, she is pretty good and sympathetic as well.

Neither could offer a cure, but they both helped in their own right. I learned from Kathleen the proper pressure to do my own internal massage. And Dr. Lawley has prescribed me Ativan as needed to help relax the muscles down there during flares. He did want to do a cysto and I declined as I am the best judge of my condition and know I have a muscle issue.

Regards,

SS

[chrisjiujitsu]

Kathleen is my PTist also. I have been seeing here for a while. She told me about the massage, but said it was a last resort. I guess I will go back to her and say I am ready for it. It is great to find someone with the same condition and sees the same PT.

I will check out the doctor. I am wondering what treatments you are doing and how well they are going for you?

I hear everyone talk about flares, I have some days that are worse than others, but I am pretty much in some sort of pain (usually mild) 24/7.

[latte]

My first PT had me doing kegels which did nothing for me. The best method I have found is the Stanford/Wise-Anderson Protocol. I would buy Headache in the Pelvis and read it. It will give you specific stretches that are very helpful. I do stretching everyday with good results.

[chrisjiujitsu]

Thanks for the advice. I was looking at that and was thinking of taking a trip to california. I have a good job now and should take full advantage of my resources. I am hoping it doesnt cost to much though, just in case it doesnt do much for me. I was initially doing a few kegels (like 15). The new PT has me doing them for 30 mins (10 secs on, 10 secs off). These show much better results than the 15 I was doing. Although these are really inconvenient and uncomfortable to do.

[scoobysnacks]

Kathleen did internal work on my immediately, though only on the sphincter, but I was really tight in that area as measured by the biofeedback device.

Let her know you think you need internal work. I have not been to her in some time, but she was helpful, though not skilled in the SP at the time. Id be interested to know if she is now.

Another somewhat local lady is Dr Potts PT at the Cleveland Clinic. She has been see Dr Wise's PT guy from what I understand. He name is on the tip of my tongue (Betsy Willoughby or something like that). I saw Dr Potts and her once. She did much more aggressive work on me, and told me that my deeper internal muscles seemed fine and very lose for someone who was claiming CPPS, she did say that my sphincter muscles were very tight, leading me to believe my main issue are with levator ani syndrome rather than anything truly deep internally.

So from that I learned that I need to work the levator ani. I'm signed up for the December California trip. I'm going with the wife, just in case the PT finds something deeper that may need worked out.

Regards,

[chrisjiujitsu]

I saw Dr Potts twice and Betsy once. I thought doctor Potts was the best doctor I had ever seen the first time I saw her. Unfortunately the second time she didn't seem to do anything for me and I felt very rushed, which is terrible considering I drove for 10 hours to see her. I don't plan to see her again after that. She seemed to be out of help for me and offered experimental drugs which I was not interested in.

I had noticed a couple months before my symptoms that my perineal area seems to be protruding. I just recently thought about massaging that area which seems to make the pain go away and the area feels more normal. I was thinking the pain may be going away just because I am distracted with the massage, but maybe they are connected.

[scoobysnacks]

I massage my perineum very attentively. I was finding that it was very tight, and was causing the sphincter to tighten as well. I would push on the perineum and it would immediately loosen, or release, hard to explain. Since doing this, its staying less constricted. You can push around down there, dont be afraid. For the longest time I thought that pain was in the prostate, but really it was more superficial in the muscle.

AS for iternal work you probably need to get Kathleen to show you, and then start doing it on yourself along with external massage.

Also start stretching. I do a 20 minute yoga routine twice daily and listen to my relaxation tapes. The best yoga positions for me is simply bending over at the hips, inhaling deeply, and pushing out with the perineum to stretch the area back out, the deep squat, and the hand on knees position very similar to a baseball players stance, while deeply inhaling, letting stomach protrude out, and pushing out with the perineum, again to stretch the floor.

Dr Potts was very good my first visit, but the drive was so far to Cleveland I didn't return, especially when Betsy told me she could email Kathleen and have her do the same work on me.

SS

[LightningTree]

Ok, I never benefited from kegels. I can understand the benefits, but I think you are going to want to go further and investigate doing stretches involving your pelvis in every which way possible. Do this with the help of your PT if the PT Is willing. This is what has benefited me the most. I'm thinking about going back to the PT I saw to try to figure out why a particular stretch is working for me. SHe was genuinely interested in helping people with this and I think we could learn something.

What has been most striking about my experience, and what I think PTs should know, is that the muscle stretching I do is very, very specific, and is hard to do. Other stretches, or this stretch done just a little bit differently, doesn't help. Yet if I get it just right and get the right spots to stretch, its like magic.

For me, the muscles that need to be stretched are deep within the pelvis and their stretching is not best derived from sport's medicine in which peripheral tearing is often the hallmark of treated injury, but oddly enough, instead from the ancient practice of yoga, which focused on core musculature deep in the body. And by core, I mean the muscles that come off the spine into the back and run through the pelvis. THe illiopsoas, in particlar, needs more attention in our condition than for someone with a knee injury.

I say continue to work with your PT.

Also, congratulations on getting through college, especially coming from a poor family and having medical problems, you were at an extreme disadvantage. Well done.

As far as drugs for anxiety go: I take some mild drugs (small dose) for mood stabilization, but only because I have a very long history battling depression. I wouldn't take anti-depressants just because of chronic prostatitis / chronic pelvic pain syndrome pain symptoms. But I would take them because if you are depressed, because chronic prostatitis / chronic pelvic pain syndrome is definitely enought that many of us become depressed and need help. If you start to have less CPPS, and that is the only reason you are depressed, you won't need the drugs later. Also, keep in mind that often, spiritual or pychotherapeautic approaches can be very helpful.

I think you will find that anxiety pills (like Xanax) do relieve your symptoms (if you are like me) but only for a very short period of time. There is no guarantee that it is only because of muscles, as they dampen the central nervous system.

A much better long-term approach is to start working on your life-long control of anxiety.

You come from a poor family and are probably working hard to get where you want to get. That is stressful. My Dad did the same thing, and boy, does he have a bad back sometimes!

With all of your hard work and drive to succeed, you need to keep in mind that you are also a valid person, already 'good enough', and that your innate will try to succeed should carry you. Not the floating drive to be 'good'. If you are honestly a good person, that will occur naturally over time. "Goodism", as Sarno describes (and I believe correctly) leads to the manifestation of muscle symptoms. The difference from being good and "goodist" is subtle and not easy to achieve if you are stuck in a "goodist" model of yourself. Get to work to break out of the shell and just be the good, hard working person you are, rather than your own slave-driver. The key to distinguishing "goodism" from "good" is that in "goodism", the super-ego (the part of you that says "I should" or "I shouldn't") is actually being quite cruel towards you. In Sarno's theory, the super-ego is driving the ego to lash out and/or suppress due to fear the deep emotional rage within it. This rage displaces into the body as ischemia (blood flow loss) so that the ego need not face the scary and unpleasant rage that is generated by the super-egos "should and should not" hailstorm. All true morality is symmetric (someone might want to tell our government that.) What good is it to be good ot others if it comes from being not good to yourself. The moral way to be good is to be good to you AND everyone else. The key is to be good but to allow your ego to exist. I recommend literally talking (in your head) to your ego and telling it that how it feels is ok and that everything will be all right, and then letting the emotions out. In his theory, a plague in our civilization is that we achieve good through goodism, and as a result supress and drive our ego to rage. Both super-ego AND ego must flourish.

(This is no excuse to be bad, by the way, just the imperative to be good while respecting the ego's feelings.)

Also, think about the approach of Dr. Wise. He believes that stress and tension result in the chronic shortening of chrocnically tensed pelvic muscles. Your pelvis ends up in a stably painful configuration. Stretching, daily relaxation, and breaking the habit of habitual tensing are required, as it getting at the areas of condensed muscle (Trigger points) that are generating much of the severe pain throughout the pelvis.

My 2 cents. And hang in there. My brother went 4.5 years with this before seeing improvement by getting on the right track with treatment.

I recommend reading both Dr. (Med) Sarno's latest book and Dr. (Psychology) Wise's book A Headache in the Pelvis. I think both are very important insights into the mind-body axis, even as they disagree somewhat on the best course of action to take. Interestingly, the medical doctor takes the psych approach and the psychologist takes the more physical approach. An interesting cross over, that in its symmetry says more together than either could say on their own.