looking for feedback

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Alessandro76
Posts: 27
Joined: Fri Apr 15, 2016 9:37 am

looking for feedback

Post by Alessandro76 »

it's been a while, exactly one year from my latest post.

Tbh I don't know what is happened, I hope one of you can help me even with a word, suggestions, ideas etc etc..
in short,
the last episode I had, was exactly one year ago, and apparently, with the same symptoms:
burn/pain along the bar of my penis to the top
and burn/tension/on my bulbospongiosus area and sometimes my genitals for no reason are cold, especially my penis.

atm, I do not have any pain when I'm sitting, well I feel my bulbospongiosus in tension, maybe a bit irritate, but as I said I'm able to sit.

no sign of:
knife-like or aching pain, feeling of a lump or foreign body in the rectum, twisting or pinching, hot poker sensation, constipation,
pain and straining with bowel movements, straining or burning when urinating, painful intercourse, no pain during the ejaculation ( before or after) and any loss of sensation,

at least today or in the previous days, tomorrow who knows


what I know for sure, is, I have been asymptomatic for on1 year,
my last episode has been last august 2020 for 1 month with the same symptoms.(more or less)
actually, I didn't remember the symptoms I had, luckily I've read a post o mine here yesterday and I discovered that my symptoms of last year are the same as today.

so what has happens?
why Do I have these new symptoms?
in short:
I back to my physio, after 8/9 months from my last treatment, as my normal follow-up without any symptoms, we did 3 sessions (1 per week)
almost immediately, I got the impression that something in my pelvic area was not fine, and I reported it to my physio almost straight.
He said that it might be normal after 8 /9 months without treatments feel this pain.
it might be?

Guys do you think that the physio during the internal Standford protocol has irritated the nerves?
or the combination between
Standford Protocol + sex after few hours the treatment has irritated the muscles?
because this is what I did.

as I said, my symptoms are the same as last year, I did some exams and I went to France to see E.Bautriant ( 3rd time).

Physio first and Bautrant later checked for Tinel's sign
and luckily I was free of pain.
the result of my 3D MRI said the same nerve was completely free, only tension on my perineal superficial muscles: bulbospongiosus and transverse muscles.

Eric Bautrant, after my visit, said clearly that I'm not in his branch, because for him my problem is not related to the nerve.
( in 3 years I've seen Boutrant 3 times) and I did 2 or 3 times a 3D MRI scan to check the nerve and his branches.

so, now I have those symptoms, but I can't see no one cause in Europe is the season holiday, most of them will get back to work in September.

hope that my physio didn't do a mistake during the treatment.

what do you think based on my short recap?
a word could help me.

thanks in advance for any replies.
Alessandro
Alessandro76
Posts: 27
Joined: Fri Apr 15, 2016 9:37 am

Re: looking for feedback

Post by Alessandro76 »

no one?

:-(
flyer28
Posts: 244
Joined: Fri Mar 25, 2011 11:29 am

Re: looking for feedback

Post by flyer28 »

Alessandro, I remember we exchanged some ideas exactly one year ago (having similar issues) and unfortunately after 10 almost assymptomatic months I also have a flare up. More to come later.
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
flyer28
Posts: 244
Joined: Fri Mar 25, 2011 11:29 am

Re: looking for feedback

Post by flyer28 »

Here are few of my thought regarding your relaps:
-I assume that in 99% probability you dont have PNE but pelvic floor disfunction where pudendal nerve plays significant role (dont forget other pelvic nerves)
-to skip PT for 8-9 months was a mistake (exactly the same I made because of covid restrictions etc.). Tension in your pelvis was aggravating, even before you felt any pain (I exactly know this nasty feeling when I feel the hardening trigger points in my pelvis despite no vigorous pain, only some stiffness). Perfect scene for flare up...
-after so many months without PT it is normal that internal work induced some irritation (I am always worse day after PT, but much much better third or fourth day)
-it is advised to be in perfect calm state few hours after Pt. You had ejaculation which is like tsunami for thrashed pelvic nerves/muscles and made ideal condition for "perfect storm" of flare up (my flare up started also after clenching and tense ejaculation, despite some previous ejaculations which were completely uneventful)
-rest is anxiety fueling your sympaticus autonomous nervous system which is not able to calm down (I know it very well).
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
Alessandro76
Posts: 27
Joined: Fri Apr 15, 2016 9:37 am

Re: looking for feedback

Post by Alessandro76 »

Hi flyer,

I think, we both have the same issue,
I’m getting crazy here, even because my physio can’t see me before end August/beginning of September.(he’s in holiday)

I don’t know if the combination between treatments and sex might be cause this flame up, it almost a week now and these symptoms are getting worse, and some of them I never never never had it before.
Tomorrow I’m going to have a mri 3d Tesla, like this I will know what it’s happened.
… and even if I had sex after the treatments, it was not a marathon and I did many time in the past and nothing has happened, really I don’t have a clue , I was completely free pain until last week from 1 year !!!…
My fear is that I damaged the nerves having sex after the treatments.
what do you think?
it might be possible?
Someone please answer me, thx
flyer28
Posts: 244
Joined: Fri Mar 25, 2011 11:29 am

Re: looking for feedback

Post by flyer28 »

It is highly improbable. High anxiety is mastering your mind right now, I know this feeling very well, very difficult to cope.
I also had days when I was almost decided to go for operation at all cost and then came period of several months, when my pain diminished to barely percievable discomfort, I even played tennis or soccer without any problems. Until next flare up. This condition is highly unpredictable and sometimes flare up comes out of the blue, I will write you more in PM. By the way, we are almost synchronized, I am desperately waiting for my PT appointment in September (August they have vacation).
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
Alessandro76
Posts: 27
Joined: Fri Apr 15, 2016 9:37 am

Re: looking for feedback

Post by Alessandro76 »

You are totally right …. We are synchronised
Ahahahah

About tennis, I played until last week….. and I played many times for hours and hours during this year
Jesus this pathology is fxxxxxxg unpredictable….

Last November I had in plan to meet the famous surgeon in Vienna, but I was feeling so well, that I told him, sorry but I’m asymptotic. dear flyer, in our case, I guess, the way to get out its only do physio regularly as I was doing until last year, once per week.

how do you manage it , I mean, when flame up comes out? you manage it by physio, drugs, both? panicking like me/?

Btw hope you are right about me.
I’m just worry, because, as I said, I never had those symptoms and usually those episodes was staying not more than 1 or 2 days
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