Help understanding...

[scoobysnacks]

Okay fellas,

Here is the thing. After reading the site and thinking about my own condition I tried the mast cell route. Sure enough my urinary symptoms are all but gone. The perineum pain was over months ago with help of quercetin, but it took chondroitin to get the urinary symptoms gone. Unfortunately the pain in my tailbone is annoying the hell out of me. I can't really say its a pain, but more of a full feeling, sometimes a numb type feeling just like if you sat on your leg to long in a funny way. The weird thing is when I was on Levaquin, quercetin and huge doses of saw palmetto the pain was non existant. Back then it was perineum and urinary burning. Now that the two worst are gone, I now have this damn pain back again. Dont get me wrong out of the three this is what I would have chose. BUT I'm SO CLOSE....have any of you taken anything that immediately helped alleviate this? I'm taking Aleve (naproxen) it helps but not permanently...I've only been taking two for the whole day though. I dont want to get into the habit of using too much NSAIDS.

Here are my thoughts theories.
1) this is still being caused by my prostate. ALthough the supplements along with Flomax have alleviated my urinary symptoms they havent helped this but might in do time they might???? what do you think OR
2) The swollen prostate for 6 mos has caused nerve issues or damage. I hope no damage....how would I test this? I was thinking of asking my GP for neurontin if I dont get better in a month on the current protocol.
3) Somehow due to the CP symptoms I had I tensed up and gave myself levator ani syndrome. How do I know if that is in fact what this is?

Can any of you comment on which would be more plausible. Its just so weird that all symptoms are gone but this annoying one that makes me look like I have ants in my pants. I'm constantly shifting from one side to the other.

Any other medications that may work.

Is Levaquin really that good of a anti-inflammatory, stronger than 440mg of Aleve (naproxen) per day?

Please all your comments would be a huge help. I'm on the verge of recovery. Thanks so much,

SS

[MS]

3) Somehow due to the CP symptoms I had I tensed up and gave myself levator ani syndrome. How do I know if that is in fact what this is?

Have you tried biofeedback? A PT can measure the "resting tone" of your Levator Ani, and the rise in activity when you tense or relax it.

Here is a good article written by Dr. J. Potts:

http://www.aboutincontinence.org/PelvicFloor.html

And by Dr. J. Weiss:

http://www.jmweissmd.com/

Also see:

http://www.incontinet.com/prostatitis.htm

[scoobysnacks]

I havent tried a physiotherapist. But that sounds like a good idea. Could they assess whether my condition is linked to muscle problems in the pelvic floor. I graduate in a May and should be working by August...I have no problem using time off to go to Stanford, but Id like to know before I shell out that dough that its muscular related.

SS

[MS]

I think a good physical therapist could tell you if your pelvic floor is "too tense" at an ininial assesment, provided that the therapist is trained in pelvic floor dysfunction. Many specialize in "Women's Health therapy," as I guess PF problems are associated with childbirth.

Nonetheless, an EMG will (without any pain!) will measure tension in the Levator Ani. The thrapist can also palpate the Levator from outside and inside (ouch) and suggest a treatment program, such as further biofeedback, stretches, and trigger point therapy.

I have found two therapists in Washington DC who follow a method VERY similar to the Stanford/Wise-Anderson Protocol, so a trip to CA may not be necessary. They are both accredited with the International Pelvic Pain Society. Others have posted similar stories in other geographic locations. Where are you located?

[scoobysnacks]

Cinci Ohio

[MS]

Scoobysnacks,

It might me a long drive for you, but I recommend talking to Dr. R. Dogweiller, University of TN, Memphis. http://www.utmedicalgroup.com/pages/doc ... iygul.html

Dr. Dogweiller reffered me to the neurologist I see now in Washington DC, who has helped me tremendously. Dr. Dogweiller has authored many articles on CP/CPPS and myofascial pain, and specializes in trigger-pioint injections and pelvic floor dysfunction.

[asg123]

MS, who are the good therapists that you have gone to in Washington, DC?

[webslave]

MS is long gone. Email Dr Ragi Dogweiller and ask her whom she recommended (relate MS's message to her)
[email protected]

[aeocaravaggio]

I emailed Dr. Doggweiler and she gave me the following information for the washington DC area

7830 Old Georgetown Rd, Suite C-15
Bethesda, MD 20814-2440
USA
Phone: 301.656.5613
Fax: 301.654.0333

she said these guys are really good