Back in new millenium - I'm back

[SFR75]

Hello

Don't want to make the story very long. So I have this Pelvic Pain for quite some time.
Actually last 6 years I've been more or less asymptomatic, but recently pain got back.
My symptoms started in 1999 and were triggered by some infection, treated with some weak
antibiotics and then re-treated with some strong 30-day antibiotic attack. Then all hell
broke loose - got all symptoms from the long list. Cramping pain, frequent urination,
burning pain, pain after ejaculation, weak ejaculation, weak erection. Everything!
Tried diets, tried more antibiotics, tried vitamins, zinc. Nothing really helped. Since I was
living in SF back then, I was directed to Stanford clinic. I'm not sure Stanford/Wise-Anderson Protocol was
developed completely back then, but I was sent to a physical therapist in SF, which did this
myofascial release on pelvis. This was definitely a breakthrough in my condition.
Everything got much better! Then I moved to France (where I live right now )
and things got worse again. Found a good neurological department in local hospital here, which
has reeducation center. This time it was biofeedback. Did 2x 10 sessions + they taught me some
stretching exercises. That was in 2002-2003. Again - that helped me a lot and basically since then I
managed to keep symptoms under control. I guess I was never really "cured-cured", but symptoms
were very mild and manifested very rarely. Couple times I had "flare up". That was mostly associated
with pain in lower abdomen, urination symptoms, famous golf-ball-cramping feeling in perineum,
weak ejaculation. Ok. So. Why am I here ?

Because last summer things got bad and never really went away since.
My current symptoms are going through some life cycles, disappear for some time and then get back.

1. Burning pain in perineum AFTER urinating. It's like delayed pain, which starts shortly after voiding
2. Urine stream looks "split" and somewhat flat as if it's obstructed
3. Cramping pain in perineum - which goes for couple days, then disappeared and got replaced by #1
4. Weak ejaculation/low libido

So last summer I bought "A Headache in the Pelvis" book and even though I already knew by experience
that physiotherapy and biofeedback helped me, I was still amazed by power and wisdom of this book.
I got back to neurological hospital and they wanted to do all kind of tests to make sure there is nothing new.
So I got urine test, blood test, electro-conductivity test of pelvis (where they stick needles and measure
electrical response - don't know the exact name, but it was very unpleasant test and pretty long one), CAT
scan of spine (why??)... So everything was NORMAL (except white cells in urine, but doctor dismissed these
findings). They also wanted to do urodynamics test and cystoscopy, but I decided to stop it at this moment.

I know that medications didn't work for me and physiotherapy/biofeedback did. And doctor agreed to do
biofeedback/reeducation cycle again if I want.

I'm totally willing to go with Stanford/Wise-Anderson Protocol....
However in the book I don't find my symptom #1 !!! (pain AFTER urination).

I'm 90% convinced by Stanford/Wise-Anderson Protocol and 10% of me still thinks that maybe there is some bacteria or
some inflammation, which goes undetected (I know it's a bit ridiculous, but ....)

So I'm pretty optimistic that I can get this thing under control, because I already did it once.
However I'm pretty depressed that my current symptoms disappear for couple weeks and then
get back exactly as before.

Any opinion / feedback is very appreciated.

Thank you very much!
M.

[webslave]

Do you have pain after ejaculation?

[SFR75]

Do you have pain after ejaculation?

no.
(but did before along with all other symptoms)

[webslave]

It looks like your urine is irritating the urethra. Look carefully at what you are eating and drinking (avoid caffeine, acid foods etc as per "IC diet"), and drink more liquids to dilute the urine.

To get to the root cause of this will require more, as per all the ideas and strategies we discuss here.

[SFR75]

It looks like your urine is irritating the urethra. Look carefully at what you are eating and drinking (avoid caffeine, acid foods etc as per "IC diet"), and drink more liquids to dilute the urine.

To get to the root cause of this will require more, as per all the ideas and strategies we discuss here.

Yep, I understand.
It seems that urethra is irritated or it could be a reflux of urine that irritate
prostate ??


I've tried drinking lots of water when this whole thing started again last summer.
Also stopped on coffee. I don't think it changed anything really.
But it's true that I normally drink very little water.

Another thing - sometimes this burning pain after urination is not down,
but it's in front - like in front of pubic bone - lower part (actually there is no
bone there - it's the opening).

Also I've noticted that during these periods I have abnormal bowel movement.

And the last thing - when I palpate pelvis floor internally - it's very tense in
general and many points seems painful.

Voila! ....

[scotsman]

Worth giving Prelief a try (http://www.akpharma.com/prelief/preliefindex.html).

Richard

[gmccormack]

Hi Webslave,

If you don't exhibit pain after ejaculation do you not have chronic prostatitis / chronic pelvic pain syndrome in your mind? I have never had pain after ejaculation and have experienced great results with SF so far and read a study that only 50% of men with chronic prostatitis / chronic pelvic pain syndrome have it. This seems to be your gauge though. I have or had every classic sign on chronic prostatitis / chronic pelvic pain syndrome except pain after ejaculation. I doubt my diagnosis every time you bring this up.

[neue01]

I don't have much pain after ejac either. I get a slight burning afterward if I do a strong Kegel afterward though. I can also sometimes bring about the same burning in this area during PT. Beyond that I also have many of the other symptoms associated with CPPS. It's easy to see that we all suffer with different muscles and areas of the pelvic floor bringing about different sets of symptoms. chronic prostatitis / chronic pelvic pain syndrome is pretty interesting like that.

[SFR75]

Hi Webslave,

If you don't exibit pain after ejaculation do you not have chronic prostatitis / chronic pelvic pain syndrome in your mind? I have never had pain after ejaculation and have experienced great results with SF so far and read a study that only 50% of men with chronic prostatitis / chronic pelvic pain syndrome have it. This seems to be your gauge though. I have or had every classic sign on chronic prostatitis / chronic pelvic pain syndrome except pain after ejaculation. I doubt my diagnosis everytime you bring this up.

As far as I understand ... well.. as far as I observed my symptomps .. they tend to change and manifest in different ways. I think that it's a chain of events that trigger different symptoms. For example one day you start having an urge to urinate more than usual. Who knows why - maybe it's cold you you did drink too much cofee. So then you start fighting this urge - you drink less water and tight your pelvis. So you tight your pelvis and you get pain and other things. Then you ejaculate during this condition and it's weak ejaculation which, in it's turn irritates seminal vesicles, which affects you in another way - you contract different muscles and start fighting this pain as well. So then you decide to drink more water and you strain your system again and so on. At least I suspect strongly that I fall into this kind of sequence of events. Cause getting better kind of unwinds these things backwards to "normal" state.

[webslave]

Pain after ejaculation is known as a "classic sign" of CP/CPPS. If a man reports it, the diagnosis is usually in the bag. However, not all patients have it, just to make things confusing!

[SFR75]

Pain after ejaculation is known as a "classic sign" of CP/CPPS. If a man reports it, the diagnosis is usually in the bag. However, not all patients have it, just to make things confusing!

BTW: I'm new to the forum and just wondering if you are a doctor or some advanced patient ? :)
Sorry for asking this question - I just can't deduce anything from your nickname.

[carld]

I don't have pain during ejaculation or after...But with that being said I can on and off have some discomfort after I crank one out...

[Hacksquat]

At times I feel the burning in my urethra is aggravated after peeing. However other events can trigger it too (sometimes worsened after ejaculation, sometimes stressful events during the day), so I don´t think its caused by acidic urine. It's probably neuromuscular.

The urethral burning is my most long-standing and prominent symptom. Still it disappears at times even during my current flare, which shows it is something that can be cured.

[SFR75]

At times I feel the burning in my urethra is aggravated after peeing. However other events can trigger it too (sometimes worsened after ejaculation, sometimes stressful events during the day), so I don´t think its caused by acidic urine. It's probably neuromuscular.

The urethral burning is my most long-standing and prominent symptom. Still it disappears at times even during my current flare, which shows it is something that can be cured.

Interesting.
I also tend to think that it's neuromuscular, cause if I drink only water and pee practically water, it's burns pretty much the same way.
And trigger point technique for example helps to take symptomps away.
For me - this burning pain comes within couple minutes after voiding.
Similar to your case or not ?

[carld]

The urethral burning is my most long-standing and prominent symptom. Still it disappears at times even during my current flare, which shows it is something that can be cured.

I tell my self to not use the word cured...but rather managed...non the less I think your spot on

Best, Carl..