Introduction:Mon. Dec.15th JoVo Chicago

[garyholc]

I won't lie to you, its certainally a strange experience first time! My PT is a bloke and I actually found that more weird than if it was a female. You have to remember though that this PT would have done this many times with other blokes, big, thin, fat, small and will be a professional at what they do. As for the toilet question, its human nature, apart from giving your self an enema there is nothing you can do, and likewise, thats why the PT wears the proper gloves. A qualified and skilled PT will have come across this before and it is to be expected. Not all the time of course, so I really wouldnt worry about this. I know its dignity etc. but you have to remember this person has done this to many people, its their job, and they are a qualified professional.

Finally, I also won't lie to you that your first experience of internal PT can be quite emotional, and it is painful sometimes, imagine pressing salt into a wound, that sort of feeling - BUT.... you will leave the office feeling like a new person, with less or no pain, and with new hope that you finally know some of the causes of your pain, and that more importantly, you can treat it. My advice to you Jo would be to go there as relaxed as possible, remembering you are not the first person to see this PT, that they are skilled and qualified at what they do, and that you will leave a new man. No doubt the PT will put you at ease talking to you before treatment, and whilst having treatment, just lay down and close your eyes and relax, and let the professional get on with their work.

As for passing gas, you may find this funny, but after your first PT session you may find yourself passing gas a lot more often for a few days!!! A few people I have spoken to have experienced the same, I think maybe its because the internal muscles have relaxed a bit!!! So dont eat any sprouts lol :)

[carld]

Don't worry about it...My PT was a woman, I would rather have a female than male doing it....That's just me. They say males are better because their fingers are longer and stronger, so in the end...Who cares, as long as the pelvic floor dysfunction is being worked out.

Don't expect to feel great either...You may take a few steps back as the TP's and tight muscles are stretched out...This is normal and should be expected. I knew my condition were muscles because my symptoms were repeated after PT...I would have to urinate etc...

This is a very important step twards recovery...Along with your relaxation, you will slowly recover.

I would explain to your kids what's going on with you...that connection is important, so your daughter doesn't get hurt by not being as proactive as you would like right now in her life...

Best, Carl...

[Jay]

Hi Joseph,

You have no reason to be ashamed, and it's certainly not worth having nightmares over. I won't claim that your first treatment won't be awkward, but you must remember that pelvic PTs would be out of business, were there not other people like you. They've seen whatever you've got down there many times over. Try to breathe (you're good at that), close your eyes, relax. In the hands of a qualified therapist, you've little to fear. It will probably flare you initially, but as far as the therapist goes, you'll become more comfortable after a few visits and it'll be a breeze to deal with your treatment sessions.

Regarding your constipation concerns, I'm chronically constipated and initially had similar fears. They came to fruition when, on one visit, my PT was doing her work and pronounced "you're constipated today, I can feel it". I panicked and profusely apologized, but she found it amusing. She put a hand on my arm and explained that she could feel closed muscle holding the movement back, which is how she noticed. She prescribed a dietary solution for times when it's really bad. So, even if your therapist detects that you're constipated, they're not necessarily finger-deep in a bowel movement. Even if they are, it comes with the territory and is nothing to lose sleep over.

I agree that you should consider discussing your condition with your family, children included. For the moment, you're moving forward with the assumption that you have a muscular problem, and where's the shame in that? We all have muscles that can go bad, yours just happen to be in the pelvis. Explain to the youthful ones that you have to be very careful in order to avoid hurting yourself, because your pelvic muscles handle lots of things. I'd also explain, in general terms if you prefer, that a physical therapist will be helping you to relax the muscles so that they're less painful.

Best,

Jay

[JoVoChicago]

I've been telling everyone it's my back.
But I need to fess up.
My worry is my Son - I hate to even think this - but - well - he has had symptoms 2 times - 1x it was just a pain in his right testical that lasted for a few days - he was given antibiotics and told to drink a lot of water - the next time was worse - they said he had passed a small kidney stone - even though they found nothing - given more ab's - told to urinate in a special jug for a week and mail it in - results were clear. His follow up was clear - he was given 2 weeks of Flomax...prostate exams = clear - everything clear.
I was straight up & open about my Panic Disorder - and they both have Panic Attacks now - are seeing shrinks and on Xanax.
I feel like I put it in their heads or something...very guilty.
Superstitious.
Ridiculous.
I know you guys are right.
I need to tell them - especially my Son - incase - he is developing this and maybe we can head it off at the pass.
Is there any evidence this is genetic?
I've been afraid to search it.
I also need ot get over the "pseudo-macho" B.S.
Funny what you mentioned about the first exam - anytime I get a prostate exam - afterwards - I urinate like crazy - pain during the exam sears from my head to my toes - which the Dr. aleways remarks is unusual.
I suspect I'm loaded with trigger points - from that experience.
also:
Advice please.
As I've mentioned - I have all of these nerve disorders i'm being treated for - but medical tests have never shown anything.
The TP Workbook describes - my Neuropathy, Knee Arthritis, and Teeth Pain as well as Pelvic Pain to a T.
(No pun intended)
I have the opportunity to work with a TP Therapist who was a long time assistant for Janet Travell Herself - who will address everything except internal pelvic floor issues...she does do external though.
- OR - I have the opportunity to work with this PT who specializes is PFD only - her clinic is an entire program - diet, exercise, relaxation therapy.
She has a degree in Psychology & Physical therapy.
My insurance will only cover one.
And I'm unsure how theyd feel about having toes stepped on.
I just feel I need to address all of my Chronic Pain issues - or I'll always be tense - and not get much help.
anything you guys think would be helpful and appreciated.
Thanks - gotta get offline...
My Wife thinks I read this board too much.
I've been trying to read through the entire thing...to learn...but she says I'm obsessing - as I'm prone to.
thanks...
Joseph

[webslave]

Is there any evidence this is genetic?

Yes, lots. Dr Dimitrakov was doing a study, ask him.

Go for the therapist who will do internal work.

[garyholc]

Jo, you seem like the sort of person who is very prone to worry and anxiety and I think you should take a step back and take a deep breath and stop worrying about everything the way you are, else you are never going to get better. If you dont get this worry and anxiety under control, your time spent with your PT will be a waste of time. Sorry to be blunt, but we all have found out that getting stressed and worried will reverse the good work done by the PT, and indeed by you.

Stop worrying so much about the PT session, you are going there to get better, I was actually excited about going to see my PT for the first time because it was a hope that he could prove to me that I wasn't going crazy and that this thing could be treated, and I walked away from there a new man with new hope. This thought should fill you with excitement, not dread.

As for your son, yes there are studies which can be read about on here which show a genetic link. BUT, if your son adopts the same worry and anxiety you do, then he won't get better either, so you also owe it to your son to calm down a bit here!!! I remember watching a comedy once with Bill Murray, think it was called "All about Bob". In which, to overcome his problems he had to take "Baby Steps"... and that is a good approach here. You can't rid yourself of chronic prostatitis / chronic pelvic pain syndrome over night, so take baby steps to overcome it.

Your first step is going to be the PT, get this step out of the way first, dont worry about it, relax when you are there and walk out feeling good. The next steps will be learning PT on yourself, internal work on yourself, learning relaxation techniques, breathing etc.... think of them all as mini projects! But most importantly for now, just take a break from your worry and have some "me" time, whether its sitting in your fave chair with your fave music on loud, with your eyes closed, or just sitting outside and watching the birds, do something that takes your mind off this.

As for reading the board too much, I put my hand up and admit that I was one of these people, I spent too much time on here, I saw it as a lifeline and read so much. While a lot helped, a lot also made me worry, particularly stories from people who seemed to never get better, or who had worse symptoms. See this board as a place to come when you need someone to chat to, or for research, but dont see it as somewhere you must "live" each day.

[Jay]

Hi Joseph,

I would definitely go to the specialized PFD clinic. If a therapist doesn't examine you internally, then they're potentially missing an entire facet of your problem. Further, the other clinic handles dietary and psychological needs, which is another plus!

Best,

Jay

[JoVoChicago]

Hey Guys,
Yes, I'm definitely going with the Pelvic Floor Dysfunction Clinic.
I spoke to both PT's - and the one who treats the entire body says that the reason she doesn't do internal work is because you really need someone whose focus is entirely Pelivc Floor related to get proper treatment for PFD.
So she said I can come see her after I've gotten a grip on the Pelvic issues - she thinks they are the most serious and should be dealt with first.
Also: (as Jay says)
The Pelvic Clinic offers a sort of more specialized package deal (I recieved the info package today) - they will address my Pelvic issues from a Nutritional/Allergic/Dietary, Exercise, Psychotheraputic/Relaxation Training & Trigger Point, Physical Therapy angle - as well as train me & my Wife how to do a lot of work from home.
The only issue is that my first appointment is nearly a month from now - and that feels like a long time to me.
On the upside - My Wife & I have taken testdrives to her office and it's only 12-16 minutes from my house - depending on traffic.
Gary,
Yes - I know the Anxiety, Stress, Worry is a major part of this.
To be brief.
I was abused as a child - for years & years.
I've had Panic Disorder since I was 19 (46 yo now).
I've been through all kinds of Psychotherapy - but the only thing I've ever found that was helpful to me was being simply constantly busy.
And due to this chronic prostatitis / chronic pelvic pain syndrome issue - my social life & activities have all but disappeared - add to that the Winter being so cold (and how it negatively affects my pain issues) and I'm just a mess of frustrated pain - going stir crazy in my apartment.
Also: Just to clarify - when I say socialize - I'm not talking about partying - I don't smoke nor drink - never have - my diet is immaculate - our friends are Artists - we go to Galleries, Performance Art Displays & Poetry Readings - stuff like that.
But, who wants to go out with people when your guts feel raw & you can't sit (or even wear normal pants) ?
I took Biofeedback classes for 6 months 3 times a week - and did excellent - but I've never been very good about bringing that into the real world.
So - I know that I can do it - just need to figure out how to make it all applicable in daily life.
Just this past Halloween I threw a large event with 25 Burlesque performances, 2 Fashion Shows, Costume Contest etc.
Following that was a large Gallery event at our Gallery - it lasted 2 days.
During that time - my Wife and My work was showing at 3 different galleries - all of which we had to attend the openings of.
Following that was a weekend long Indie Film Fest at our Gallery.
After that I just couldn't ignore the pain anymore - and I've not done much of anything since then.
So - my extroverted personality seems to have turned on me - and all of that energy has turned introverted, obsessively introspective and inward.
It's like holding a big box of electricity that I don't know what to do with.
I'm hoping that once I get in to see Dr. Kamin - I'll be able to simply focus all of it on my recovery.
(I sure do miss warm days sitting out & watching the birds: as Gary says - I do so much better with everything in the Summer - when I have nature to escape to. I'm big on gardening).
Also: Thanks to everyone for responding about my "butt" concerns.
It was really helpful to know I wasn't alone there in my embarassment.
Thanks...
Joseph

[webslave]

I was abused as a child - for years & years.

There is a lot of recent research linking this issue to IC/PBS (Painful Bladder Syndrome) in women, so it may well be true of men too.

Keywords for this post:
Child abuse
sexual abuse
neglect
violence
children

[garyholc]

jo

With regards missing the summer, how are you when you are out walking? Winter brings lovely scenes and I love going for walks in the winter, and just find simple things take your mind off things, such as a frost on a cobweb! If you are able to walk for a while, and there are some nice places to visit near you, maybe a path by the side of a stream or something, then whether its summer or winter, you can still enjoy nature....

From what you have been describing of your life (excluding the very first bit), it sounds like perhaps your body hasnt been able to keep up with your lifestyle, and this now is your body saying wwhhhoooaaa i've had enough, and now its time to enjoy some me time for a while, and while not stop doing what you love doing, but maybe not as much!

I think we have all had to slow down a bit since having this, and to be fair, for me, that hasnt been a bad thing.

[JoVoChicago]

Pelvic symptoms are flaring.
Went for a routine treadmill test Saturday Morning.
Dr. said he saw some mild irregularities in the EKG part - but not in the more important Echo part.
Panic.
Can't think straight.
Damn.
All anxieties affect everything with me.
It's such a vicious circle.
Trying to find a way out.
Untangle things in my mind.
Joesph

[JoVoChicago]

Well - I had a follow up Dr.'s appointment yesterday and these schmucks cannot *decide* whether or not my EKG reading is a false positive or not.
Always great to see Dr.'s arguing infront of you.
Inspires loads of confidence.
Anyhow:
My Gen Prac believes that my Anxiety Disorder, lack of sleep & the fact I was in severe Pelvic pain running on that treadmill is the reason for my borderline mildly irregular EKG reading.
Also: that due to a mix up in the orders - I was left anxiously pacing for nearly 4 hours before the stress test even began.
The Cardiologist said he wants to jump directly into an angiogram.
I looked up the Cardio Dr. online and his only specialty is Angiograms.
So - I decided I'm not going to mess around with this guy anymore - I looked and found that one of the worlds top cardiologist works at Loyola Hospital (near my home) and I made an appointment with him - they're going to have me redo the Stress Test, send me home with a portable 24 hour heart monitor and take other steps before they consider an angiogram.
They were also very surprised that the other cardiologist didn't take any bloodwork on me whatsoever.
He also said he wants me to go to my health club every day and walk on a treadmill for 20 minutes a day so I'm used to it before the test.
This is all giving my pelvis a real pounding...but I'm doing it.
I've not done ANY physical exercise (except mild walking) since my chronic prostatitis / chronic pelvic pain syndrome started-due to pain associated with moving - period.
So I'm totally out of shape.
Anyhow - (finally getting to the point)
I read in the Trigger Point Workbook that many people with groin/abdominal/pelvic Trigger Points get chest pains & "false heart attack" symptoms.
My first shooting chest pains started when my Pelvic symptoms began.
Is this anyone elses experience?
Thanks,
Joseph

[JoVoChicago]

UPDATE:
Well - the "iffy" EKG turned out to be normal when I brought it to Dr. Moran - one of the top cardios in the world... for the past 23 years.
It seems everyone was right about the other cardio just wantng to make a few bucks by running me through the test mill.
But - fear feeds itself and needless to say - I was kept in frozen terror for a good part of the Winter because of his greed and lies.
It sure as hell didn't do my Pelvis any good to be in that state for so long.
And with that - onto the Pelvis and my first appointments with Bernadette Kamin.
She was great.
Had me in her office for a solid 2 hours.
The first half was a full hour long explanation of my Pelvis/ Pelvic floor - using models and printouts.
She said she has ten points that she uses as a gauge as to whether or not a patient has chronic prostatitis / chronic pelvic pain syndrome - and I hit all ten on the nose.
She said I'm a textbook case.
She did not examine or treat me internally because during her external exam - she said I was so loaded with external triggerpoints that she just knows through experience that I'm loaded up internally as well and her method is to deal with some of the external stuff before potentially aggrivating anything internal.
She said I had more triggerpoints in my stomach and inner thighs than anyone she has ever treated - but not to worry - that the only people who don't recover from this are people who do not do their homework regularly - and by this she meant the Relaxation and Dietary work as much as the Triggerpoint Massage.
She also said - this is going to take a long time and I need to be patient - there are going to be high points as well as low points during my recovery and the more I learn to take that in stride - the sooner I'll get better.
My first nite of at home self treatment left me sore - but feeling much looser - I was however drained and exhausted the next day - but feeling a lot less pain.
I called her and she told me to rest up and take that day off - but to continue the stretches and treatments the next day.
Well - i woke up feeling so good - better than I'd felt in a solid year - I couldn't wait to do my at home treatments.
I'm not sure if I over stretched or is my wife over treated my triggerpoints - or if we just did them wront - too severe - but - within an hour after the treatment I was in pain so bad I was immobile - literally - for the next 2 and a half days I was unable to do anything at all - the pain was unbearable.
I called and caled Bernadettes office - but got no return call.
So I called a MyoPain center and they told me to do what they called Protocal 16.
It consisted of 8 hot showers each one hour apart and having my wife gently work certain triggerpoints on my back, arms, neck and feet.
By my second shower - I was feeling improved.
The worst part of the whole thing was that my most painful spot was directly above my appendix - leading me to think I perhaps had let my Wife damage my appendix.
I called my physician about that and he said not to worry about it - that I'd probably aggrivated a muscle that runs right over the apendix.
Today - 9 and a half days after the over treatment - I have no more than the usual pains.
It's the first day I can say that.
The moral of the story - don't get excited when you feel some relief finaly and overtreat yourself because - well - you can really screw yourself up.
I guess this is what they call a setback.
Bernadette wanted me to rest up (take a week off) and gave me some very mild stretches and relaxation exercises to do and I'm supposed to call her this morning and let her know how I'm feeling - and see her this week.
I'll update after I see her.
I hope everyone else is doing well.
Thanks...
Joseph

[garyholc]

Good that you are feeling more postive Jo.
Happy for you :)

With regards the PT, I think the problem is that when we see some significant improvement after seeing our PT, we are keen to get home and leap into doing it ourselves. Unfortunately, as others have found (see thread about PT making things worse) due to our lack of training, we tend sometimes to act like a bull at a gate and do too much, too hard, too soon and cause a flare up. I've done this myself, usually in desperation at getting rid of the pain.

Its a slow fix for sure, its not going to go away over night, over a week, or over a month, but over years, so as I said in a thread before, we have to take "baby steps" and progress slowly, but steadily. And yes there will be ups and downs along the way.

But its pleasing to hear that you had the best sleep in a year the other night, brings a smile to my face to read that people who have suffered from this for a long time are having better results with their PT than popping lots of pills and seeing medics! Good luck :)

[webslave]

She said I'm a textbook case.

Yes, that's been my recent impression too.

...they told me to do what they called Protocol 16. It consisted of 8 hot showers each one hour apart and having my wife gently work certain triggerpoints on my back, arms, neck and feet.

"Protocol 16" - heh, I like that!