Trying To Make Sense Of It All...

[Rufus]

Perhaps some of you know but I've been to a PT in NYC that specializes in pelvic floor dysfunction.

It's been 5 sessions since I've been working with her and as much as I'd like to believe it's helping, I really have a hard time figuring if time, the therapy or a combo of both is contributing to the alleviation of symptoms.

I feel confident in saying that I feel 90% better but it's that 10% that really shakes my confidence.

I still have a burning sensation around the periphery of my anus (nothing in the perinum) and a ache in my scrotum that waxes and wanes and seems to switch sides-basically it appears to have a mind of it's own.

I'll admit that I have not been doing the stretches on a daily basis and do not have any relaxation tapes (although I've gone to several book stores and tried to get some) but maybe if I put more emphasis on following the advice of the PT I'd see some results.

I'm going to the same PT that Dell, a former poster, went to.
I'd like to think I'll be just as successful as he and be able to really post a story that will inspire fellow sufferers.

My question is this;

If I don't have an infection and if the PT doesn't work, what are my options afterward?

I can't cope with the idea of being like this forever and I wish I had a clear cut indication that a person with my symptom index found complete relief with PT and or the SP.

G-d bless you all and if I don't say it enough or if I haven't said it at all-thanks for the good work you do WS.

[carld]

I would think that 10% could be helped with the relaxation and stretches

I would not even think about what if it doesn't work because it already is working because you are 90% better. Think about Bro.... Think about your worst nights and days and compare it to this very moment how you feel at 90%. That should settle you and comfort you as well.


Cheers...

[webslave]

Pelvic myoneuropathy, or CP/CPPS in the accepted vernacular, never suddenly stops, like flu would. It ebbs gradually. It may take a long time for your twitchy, irritable nerves to stop giving you symptoms. And the fact that you even mention the possibility of an "infection" as the cause for the waxing and waning pain that switches location all the time shows you are not a "true believer" yet. As long as you hold on to the suspicion that this is an infection you cannot get well, you cannot relax deep down about this and accept it is YOU doing this to YOURSELF.

[Rufus]

WS,

It's not that I believe in infection..
Truth is; I don't know what to believe...

I have read the website at length and the theories postulated all make sense but between neurogenic inflammation to plevic myopathy, to HPA axis dysfunction and auto-immunity theories, it's no wonder that I feel like I'm mentally going in ten different directions....

Personally I feel like you tend to dump my "failure" at grasping on to PM as a primary cause due to a lack of faith, whereas my faith remains rootless due to all the conjecture.

You think I'm not trying to lend the work by Anderson and Wise some bit of credibility?

Dude, I truly am trying to the best of my ability.

From the mental perspective I cannot help but pat myself on the back for making it this far...

I just hope that if I can abolish the pain in my balls with the help of the SP and if so, trust me when I say I'll be the freaking poster boy for this condition.

One thing I noticed today that did, in fact, spark some hope.

The PT had me do some core excersises that worked my abdominals and my gluts. I noticed that some of these excersises actually made the pain appear. It became clear to me that my Piniformas and/or Posas my actually be the culprit behind my testicle pain.

Carlo,

Granted, I do wholeheartedly recognize the fact that I've come from the type of guy who obsessed compulsively about the pain to actually going through a day and not thinking about the pain or having very little if not no noticeable pain.

Do I mark these days as a success?

Most definitely!

It's the days when things hurt that get me down and make me wonder if I'll ever be pain free in my (*%*&^ testicles ever again....

Days like yesterday and today.

I often refrain from posting when things are good in general I guess but perhaps this post should be regarded as a positive one. My faith as WS has clearly stated is not 100% but I sure would like it to be.

[damien6]

Hi,

Surely you don't feel pain in the testicles all the time? Ie is it transitory, goes away when distracted, better some times than others etc? 90% better is pretty good, 90% full. I can see why Webslave says that if you believe its an infection the symptoms will be worse because you'll always be feeling you have a foreign substance in your body which will provide a continual source of irritation and distress which will draw attention to or aggravate the negative symptoms. Just thinking I might have a mysterious infection makes me feel uncomfortable down there right now.

Good luck, you'll continue to get better.

Damien

[Rufus]

Thanks D, I appreciate the kind words.

But I never said I have an infection...

Every test under the sun has ruled that out.

I just want to be a true success story and put chronic prostatitis / chronic pelvic pain syndrome behind me.

Going to try a gluten free diet soon.

can't hurt...

[scotsman]

90% improvement after 5 PT sessions I only got to 70% improvement after over 50 of them and 3 years

Delighted to read that you're making such good progress - and I think that last 10% will go if you commit yourself to doing the stretches, continue with PT and, most importantly, start doing some relaxation. Don't expect it to go overnight, it could (probably will) take a number of months for that 10% to go to 9%, then 8%, then 7%. But notice the trend!

Continue with the good work and keep us all updated.

Cheers
Richard.

[damien6]

Good on you, me too!

[carld]

Do I believe 100% in the theory of PM and neurogenic inflammation and the SP I'm not sure either

But, when I connect the dots and think about the 15 years of on and off anxiety and panic attacks I have had and the guarding of my self. Wondering when the next attack is going to happen and changing things in my life and worrying about triggers to set it off. I can't help but think this has caused a sort of guarding, self defense of my mind and body resulting in a tensing of muscles. So, the only explanation is I have fallen into this category of this tension that goes into my pelvic region and not my back or head like it can for so many people. So I get stressed in my pelvis. The result is LUTS and inflammation of my prostate. So that helps me believe more in SP, PM and neurogenic inflammation and both my Urologist and my general doctor believe this to be the case as well. So I will continue to be a stronger believer each day as I work on this condition with those aspects in mind. I think I'm better off today because of this belief.


Regards, Carl...

[Sleeper Service]

At the moment I'm abut 70% better than I was. I had a horrible day yesterday but it seems to have settled a bit today. Bloody waxing and waning!

I had hoped my surgery would have cured me but it was not to be although it helped a lot. Was I depressed about this? Yes. Have I picked myself up and said "Right! There's work to be done!"? Absolutely.

If I can get to the stage where I have a very slight irritation in the urethra and feel the need to pee once every two to three hours I'll be happy. I don't need to hit the big 100%, that'll do for me.

Interestingly, I read an article by Dr Potts - one of the Cleveland Clinic's Uros - who said that she often finds that even completely cured patients refer to themselves as 95-99% cured. She then asked them if they were afraid it would come back. They said yes. I guess that subjective 1-5% is simply an expression of that fear.

[scoobysnacks]

I'm happy for you. Sounds like you are making great progress with your PT. But, you said it yourself you are only doing 1/3 of the equation. You need to stretch and do relaxation. Go on e-bay and search for relaxation tapes, I have one I was using the name escapes me, but it had the word Mind in it and it was version 2.0. Just search around, they are cheap, too.

90% better after 5 sessions, how could you not be a believer? You are working the muscles, your symptoms are disappearing, what more of proof do you need?

I remember your posts where you said your testicle pain was unrelentless and unbearable and now you report it waxes and wanes and is dull. Thats another improvement.

Keep at it.

Regards,

Ss