My thoughts on this site

[GP2]

I have observed this site exhaustively for 4 months now & I have a few observations / comments-

Firstly, whilst many men suffer badly from this condition and get frustrated at those looking for quick fixes or thinking they are cured through one approach (relaxation usually) I also think that respect should be given to those who do recover quickly & may have less pain / symptoms than others. I say this because I have seen many examples of people being told that their condition is worse than they think - Freddie in the success stories talked of relief through yoga & someone accused him of having a different condition! Others have said that Sarno is only a placebo effect & trigger points should be dealt with. Fair enough for most guys but what about those who do not have trigger points - I see little advice for them. Should we just assume that they will develop? Should we assume that this condition will last for 3-5 years as I've often seen quoted? I'm not going to say "right because others have chronic prostatitis / chronic pelvic pain syndrome so bad that's what I have to expect". Paso in 2003 got himself worked up because he wanted to know what to expect - people were correct in saying that he's had it a short amount of time & he could counter it quickly. IT SHOULD NOT BE ASSUMED THAT BECAUSE chronic prostatitis / chronic pelvic pain syndrome HAS CONTINUED FOR 6 MONTHS OR MORE that it will get worse or that the condition is chronic (although that's what the diagnosis states). I've had chronic prostatitis / chronic pelvic pain syndrome for 13 months & I'm not prepared to call it chronic until it gets worse & more regular. I just think that it is forgotten that not all men have trigger points, it is assumed that we should not sit at work, beer is a no-no amongst other things. DON'T GET ME WRONG - I respect the fact that many people can't drink beer, can't do sport, need PT & I admire & pray for those guys. But I also think that there is an element of a scare factor on this site. Maybe because as Mark once said - many of the worst cases are seen here. I am not sure about this. It can be alarming & very distressing reviewing this site & seeing what hell is like & only naturally thinking that it may happen to you. I am very grateful for this forum & many would be in serious trouble without it bit I just call for a BALANCE Maybe a separate section for all symptoms relating to various symptoms that many are confused about? BELIEF IS A POWERFUL THING & every one has to believe in themselves & their own approach to dealing with CPPS. Personally I will continue to sit at work, I will play sport & I won't go to PT unless my pain worsens. Nor will I take drugs which I have never done (Again this is not to say that others aren't in a worse state than me & need to make more dramatic changes).

I believe that my pain is because I was beaten & treated badly as the eldest child in a strict Catholic family. 30% of chronic pain sufferers have history of abuse. I am having psychotherapy which I believe will release all the hurt & pain from the past ( my psychotherapist believes that there is a Catholic sex guilt issue to my pelvic pain ) This is my route & my story. You all have your own symptoms, theories, treatments. I ask that we don't assume that every chronic prostatitis / chronic pelvic pain syndrome case lasting over 6 months means 3-5 years of pain, I ask that those who are successful in reducing their symptoms from yoga / stress relief aren't derided. Haven't there been studies showing that stress relief reduces chronic prostatitis / chronic pelvic pain syndrome for up to 85% of men. Didn't quercetin see up to 80% of men leave the site? Mark again I quote. These are relatively easy methods that have helped a huge proportion of men. WE ARE NOT ALL IN THE SAME BOAT & for those who have chronic prostatitis / chronic pelvic pain syndrome worse than me = good luck to you & I respect your commitment to this forum & your general determination to beat this condition.

Cheers,

Greg

[scotsman]

Yes, everyone is different and the symptoms and causes vary for us all. It is prudent though to explore the various treatment routes and many have found triggerpoint assessment and treatment a key factor in their recovery - along with relaxation, stress councilling and psychotherapy sessions. Everyone has or finds the mix that works for them.

All the best in your recovery.

Richard.

[Sleeper Service]

I agree with Richard. Compared to the wilderness of horror and near witchcraft that instills a number of other areas of the internet on this subject I believe this board offers an oasis for the chronic prostatitis / chronic pelvic pain syndrome sufferer. Remember, it's not just about the Stanford/Wise-Anderson Protocol, there's lots of information on exercise, medicines, diet, etc which can be taken onboard.

This is a condition with no universal cure as such so there is nothing wrong in pursuing alternative treatments. It's got to be better than one's GP shrugging their shoulders and passing one another dose of antibiotics, isn't it?

Personally I think time is probably the greatest healer, however, if there are treatments that can accelarate the healing process then I'm all for them.

Mark A.

[MB]

I am one of those people with no detectable trigger points in the pelvic floor. No referred pain etc... I have pelvic floor dysfunction (obturator and levator in spasms) but no trigger points. The SP did not do much for me.

[scotsman]

I am one of those people with no detectable trigger points in the pelvic floor. No referred pain etc... I have pelvic floor dysfunction (obturator and levator in spasms) but no trigger points. The SP did not do much for me.

Exactly - there's not a one size fits all approach to this disease.

However, I do believe it's worth exploring all the options and whilst the SP protocol didn't work for you, it was still worth exploring that option as it might have done (as it has done for many others).

Richard.

[MB]

Richard,
I 100% agree. I have very high regards for Dr.Wise and his work. The relaxation I learned from the class helps me a lot not only for chronic prostatitis / chronic pelvic pain syndrome but in every day life.

[rider fan]

Compared to the wilderness of horror and near witchcraft that instills a number of other areas of the internet on this subject I believe this board offers an oasis for the chronic prostatitis / chronic pelvic pain syndrome sufferer. Remember, it's not just about the Stanford/Wise-Anderson Protocol, there's lots of information on exercise, medicines, diet, etc which can be taken onboard.


Mark A.

I'd like to second this, though I agree with the original poster that we need to have an open mind. When I had my first go-round with this in 2001, all I had for reference was prostitis.org. Everytime I read that site I would be more depressed than before. This site has truly been a godsend for my mental and physical health over the past few months. My chronic prostatitis / chronic pelvic pain syndrome has been well under control and I credit that to the information I've learned from this site.

[GP2]

Thanks for your replies

I appreciate all that you say & I will look to the TP route after psychotherapy.

I guess it was a bit distressing having a psychotherapist tell me what I'd always feared - some sort of abuse when I was a kid. I'd blocked it all out!

Can I just ask your advice on one more thing anyone who read this -

If for me a psychological component s a massive factor then will psychotherapy be enough? What I mean is do you think psychological "pain" can initiate this condition & trigger points? What is your view on psychological pain & many people who were abused & have trapped emotions & pain? Its strange because the only pain I really feel is local ischema (blood reduction to the pelvis).

PLEASE ADVISE

[webslave]

do you think psychological "pain" can initiate this condition & trigger points? What is your view on psychological pain & many people who were abused & have trapped emotions & pain?

Apparently yes, abuse of a child can lead to this problem later in life. That's why we've included sexual abuse in the definition of pelvic myoneuropathy. https://ucpps.men/pelvi ... pathy.html

[LightningTree]

When my brother first got this condition, his doctors at the pain clinic immediately asked if he had been abused as a child, as that is often comorbid with this kind of condition.

Interestingly, many sufferers who don't even have such abuse are often of the high-stress personality type that may produce their own trauma in the long term.

Don't think that because many of us practice the Stanford/Wise-Anderson Protocol that we don't take the psychological aspects very seriously. I have had pain show up at stressful events and disappear after I leave. I went on a vacation that got my pain to vanish for a month, etc. Psychology is a HUGE impactor.

On the other hand, I have also found that when the muscles start to get tight the pain can come back in a physical way, and the best approach then is to combine relaxation with some very deep stretching. This also can relieve the symptoms. And in the end, if the stretching is just a way of signalling the mind and body to relax, then it is all the same thing. If a ritual brings about a feeling a wellness, then that could combat childhood abuse. So don't rule out physical activities to relieve stress.

I too see a psychologist to work on issues relating to my pain, and I find it effective. We keep a pain journal, and we discuss things that are stressing me out, as well as coping mechanisms.

I'm a big supporter of applying many different approaches.

I apply Sarno theory, Stanford theory, and hyperprotection theory, diet theory, and nutritional theory, simultaneously. And I do all this without spending more than $150 a year.

[Dj Smitty]

i have to say that this problem led me to come here eventually after suffering for more than two months. When I got here and saw that this problem is wide ranging and is not treated very effectively by the medical establishment, I was pretty disheartened. But I feel so much better now...I do not understand why. Really, I only made the effort to stretch every day, pay attention to clenching my pelvic muscles (which I still do sometimes if I lapse) and drinking more water/sitting down while urinating.

I've had two attacks of this problem...once at 17 and again at 22. I'm sure it will be back but at least I know how to deal with it better.

But it's quite important for people to talk about this and try new things. Although at first glance, it can be overwhelming to see how much it affects certain people's lives.