need info on my condition/is it CPPS? or ????

[bloato]

Hello
well,I've read nearly every section on this site & others over the past few yrs. looking for answers & simular cases...Many of the stories I ve read here are very simular & I can relate too so many of you,but I'm still in a fog as to what my condition really is.
Please read & let me know any insight & espesially dr.'s input,as I'm looking to find a new Uro<or possibly therapist to help,but have had NOTHING but BAD LUCK for years w/dr.'s And need to be armed w/as much factual knowlege as possible,within the realms of MY case..
Anyways,
Facts:
38 yrs old. Have had a CONDITION since approx age 19.have seen :several uros since that age,inclu.UCLA's Dr.Rajfer amongst others/Proctologist/gastro's (about 4 total)/Chiros's/acupuntures/Ortho's/rhumatologists ect.i admit I havnt seen my latest uro in about 2 yrs & am planning a trip this week,but In general,nothing has changed in that time anyway.

Symtoms:
the short version is: simply,after ejactulation I feel like CRap! (any type,any position,w/or w/out my wife present/any time of day or night)
Have gone from daily sexual activity down to 1-3x monthly in the last 18 yrs.

The long story:

not a pain before or durring sex,but starting from 5 mins to 1hr. afterwards.
The main complaint is in my GUT:lower intestine/stomach,then usualy moving around over the abdominal area over the next 24-48 hrs.
I can't eat normally durring this time & have stuck to a Bland "FLU-LIKE" diet durring these times,ie:soup/crackers/lettuce & boring stuff like this. even these cause upset gut/gas/cramping/somtimes diarhea & almost always constipation.but not as much as if I ate as normal.If I had even 1/2 piece of Pizza or a Big sandwich it would be HELL!

The next in line is FATIGUE/lethargy for the same 24-28 hrs after...simply ,I feel like an 8 cyl.truck running on 2 cyls,at best.
Again,this is ALWAYS there,not just a result of a ROUSING All-night episode w/the miss'.

Then the pain / sorness in certain areas like perenum/testies/anal itching ect. these are the symtoms that seem the closest to what others describe in their stories off Prostititus/CPPS et all.
But,Not much mention of the GUT/upset contitions that I suffer.??
At first around 19-20 ys old,I focused on the Gastro/stomach symtoms ,thinking it was an ulcer or somthing.thats also much easier to convince drs/family of at that age.I've tried ALL the diets for this ,then as yrs went on,IBS/COLItUS etc have been chased down.but Colitus has been ruled out & IBS has been ruled in,but only as an UMBRELLA term for my gut situation.

The UROs have said I Had Slight prostitius/but just had to live w/it...gee thanks!
The Last visits I had w/my curent URO wasn't much better,the main differnce in my complaints of recent yrs was FREQUENCY,& he put my on hitryn(?) for overactive bladder,which didn't do much,just made my feel faint in the middle of the night trip(S) to the bathroom.The tests he did(just the usuals)all came back good (at least 2 yrs ago.)he didn't really address the other Problems I have...
The freq. is still there,always,not just post ejact.
ABout 1x every 30-45 mins after I wake up/breakfast for 3-4 hrs for first part of the day,then about 1x every 1-2 hrs durring the rest of the day,then 1-3 durring the night(trying to sleep!)
this,again ,is more of the symtoms I hear about as classic prostate/CPPS type.

Then there is the BODY/JOINT pain...ugh! yet another set of symptoms,that have been looked at by many drs/orthos/pt's/chiros ect. & treated as such.
but I'm wondering if ALL these are linked in some way??? I belive so,but not sure exactly how.

I 've had a history w/sore joints since age 12 & am still suffering.It started w/just KNEES(as I was a semi pro Skateboarder in my teens) then Have played in Rock bands since then,starting as a Drummer(which is HELL on the butt/perinum as wellas arms&legs)

also,like many kids,did lots of Motocross-both Bike & Motorcycle,growing up & could well have done all kinds of damnage then & not really known?
So,I did a good job of beating myself up in the early yrs!
The more recent pains that have poped up are in the lower back(left side) lower rib cage(left also)
and most recent lower buttock/hip area.

The last few yrs I have taken all kinds of NSAIDS/natural anti-inflamatories/msm etc to combat the BODY pain.Some have briefly worked,but most lose efectiveness on me after a few months.
My main Dr. has put me through all manor of treatments for the Back pains inclu:epidural block injections/phys.therapy(2 months stretch/lumbar)&1 month Pool therapy.
but,none has made ANYTHING BETTER. And,the sexual problems have taken a backseat to the joint/back problems of late,but Are by far the most depressing & chronic symtoms of ALL in this puzzle.

Needless to say,my Marrage has suffered Largly because of this,even w/my wifes understanding of my symtoms,its still a Major ,ongoing problem & mystery,in my case,anyway.

I'm interested in the Pelvic floor muscle connection in all of this.No one has even sugested this to me in all this time(normaly,not surprising,but w/all the diff tests I've had,you'd think it would have been offered?) Also,I'm wondering about Nerve or possibly tendons in that area ,that could be messing things up for me?
The Stanford idea is of interest too,but I need to get a clear diagnosis fist,before going down that road,I suppose.
Any insight on ANY or pref. ALL these symptoms as a whole is welcome.
Thanks in Advance!

[webslave]

Your case sounds a lot like mine: CFS, IBS, food sensitivities, arthralgias, pelvic myoneuropathy. Yes, they are all related. I got on top of the CFS, IBS and arthralgias with a careful examination of my diet, which is difficult and time consuming, but rewarding. It also helped a lot with my PM. Phytotherapy and stress avoidance for the PM. Recently, I found that antihistamines help too: I take Zantac and Allegra. Too difficult to tell you here all the things you should try ... read my website.

[bloato]

hi
thanks for the reply.
Are your symtoms as "cut & dry" as mine...
ie:ejac=temporary sickness?

or is it up & down,somtimes bad,some good? I still have yet to hear anybodys symtoms that are parrallel to mine,yet.
But,please,if anyone's ARE like mine,let me know!

Also,your CFS,is that a daily problem for you? or on&off as well?
i have looked into the FYBROMYALIGA situation,but again the docs didn't come up w/a %100 diagnosis & threw a sample of some anti-depressant at me to see if it helped (just for sleep I assume),which it didn't. then they dropped the ball of the FM.
but that too seems like an UMBRELLA term for lots of problems that are hard to pinpoint,like IBS.
I've never had a diag. of CFS(yet) so It could be a possibility or not.
Also,your food sens. are you speaking of Celiac? or simular?
I ve been looking into that as well ,but again I have a few(2/3?) of the Classic symtoms,but not all.My dr,when I mentioned this wasn't as opposed to this as much as I expected,but still didn't want to test me for it,saying that I wasn't displaying the usual Mal-absorbsion signs& what I thought of Bloating was NOTHING(I'm not in the least bit overweight/large,quite opposite) so again,we didn't go down that road.I can see that being a factor w/gut issue & possibly Joint pain,but the sexual side effects I'm not sure about.What do you think?

As for the Zantac etc. what exactly is that for? I've read a few posts here about chaps in the uk ect taking diff. antihists. along w/other pills that help them,but I'm not clear what thats doing for the Pelvic Muscles/prostate ect,if anything!
Please elaborate a bit.
thanks.
a few other facts which I forgot lo list about me:
Have tried Quercetin(got about 10 days into it,then stopped w/Gut,head upset)
Have tried several antibiotics(no avail)
No smoking
no Drinking(for over 15 yrs)
No drugs rec.drugs(a rarity for musicians!)
No weight problem
no Red Meat/fried foods(fries/fish n chips etc)

Ill stop there! sorry to take so much space here,but hope to hear more coments from everyone asap.
Thanks
[/list]

[webslave]

You may have "post-orgasmic illness syndrome", which I believe is tied to pelvic myoneuropathy (I had it, mainly with stinging eyes post-ejac.) I think it's caused by lots of mast cell degranulation products whizzing about in the blood stream after the nerve activity of orgasm.

Read about it here.

I am not celiac, just wheat allergic. Let me add that any food from the nightshade family (potato, tomato, eggplant) make my joints very sore.

If any accredited quercetin product did not work for you, you must try ProstaProtek, which is formulated from low-allergenic sourced quercetin.

[bloato]

hmmm
getting warmer...Is there any other reading/data on this syndrome(the dutch dr.'s findings?)
Still,those stinging eyes & other influenza symtoms dont quite match up w/mine,but the others do.

The main side effect is still the gut/abdominal "pressure & gurgle-ing"that mess's up my life & has been a %100 constant in all this w/me.

also,yet another symtom,as of late,is a Pulling/straining feeling in my left leg,deep in the glute/lower hip area just befor ejac. & sometimes a "tingle"there later,on & off.

Thats one of many things I'm thinking is possibly Muscle/nerve/tendon related,but How? where? what to do about it?
As for ProstaProtek,will this just help inflamation or work on some of the Bloodstream gremlins floating around in there too?
Anyone else have any exp. w/this med?



Thanks again for the info,Istill need more!

[bloato]

well,I know this was a long/rambling post,but I was hoping to get a few more replies from you fellow sufferers?
In any case,webslave or anyone eles:All symptoms are the same.the only difference is I went to my uro this week & his diognosis was "MILD PROSTaTITUS" /clear urine/some white cells in Prost.Fluid.
That,according to him ,indicates some bactirial infection.

So he threw a 2 week course of DOXY at me and said it would cure my problems!

How many of you have heard this before?? I have,but am willing to try again since its been a few yrs. since the last ABX course.
of course ,he wouldnt hear of any muscle/pps/nerve talk,so If thats the case , Ill have to look elswhere ,right?

If there is ANY other sufferers out ther w/the same or similar problems or ABX horror strories/sucsess strorie,let me know.
Thanks.