Health Organization for Pudendal Education

hi, my name's Andrea ( male, 46 yrs old) and I Have been suffering chronic PN from 2008 to 2012. I was cured, happy and got my life back...up until 2 weeks ago...it came back..
strong, painful and terrible as you probably know.


here a short version of my 2008-2012 period:

in 2008 after a trauma ( fall on my "butt" ) I started a long journey ( I am Italian living in Milan), as probably many of you have experienced ( I went to see dozen of radiologist, proctologist, urologist and got any kind of exam, any kind of diagnostic you can think of ( even a PNMTL EMG that started to point out that something was wrong on neurological side..)...

to make the story short...I have finally discovered that my symptoms could be related to ( for me then ) to something called pudendal nerve...
in 2009 I had a PN block in the Alcock canal performed by Dr Cappellano in Milan and then was it...my symptoms were gone for few days and i started to get close to the truth..
I have also started to talk with some other people like me suffering the same pain ( membesr of former pudendo.it) and ( to make it short) I have finally met the guy that guided me to be cured..

Dr Beco (Belgium) in MAY 2010: he diagnosed me with 30 months chronic right perineodynia increased while sitting.. "pain was reproduced PN in the alcock canal bilateral but mostly on the right" and he prescribed with Rivotril ( benzodiazepine = 7 drops at night and 4 in the day , Vitamins, and Trigger point protocol to be performed by a pelvic floor fysio...after less than 20 months I healed. got back my life completely....completely.I could hold my little boy, drive my motor bike, play and live normally.

up until now...the 11th of july 2016 it started again.. suddenly...i am desperate...HOW IS THAT POSSIBLE?
I have started to raise rivotril dose again ( I wa s on a placebo 4 drops a night and in the process of quitting in august) and I am thinking to use cortisone ( oral pills for a week) , hoping it's just a flare up...

after 4 yrs of battles and 4 years of total absence PN is back. I cannot deal with this, help...what do you think about the cortisone ( my regular physician suggested a pill of 25mg for 5/10 days.. i couldn't see any neurologsit as here is almost august and most of them are on holiday.) I got an T3 MRI last week but i don't not have much hope...we do not have Hollis Potter here...

I cannot sit anymore since two weeks and got all the symptoms I had back then, sometimes i tried to walk and stand as much as i can.. it's not going away.. it came back...it came back. help

Hi Andrea,

Well, it sounds scary for sure and it has happened to other people too so you are not alone. Can you go back and try physiotherapy again? For myself, I know that my problems are related to issues such as bad ligaments, pelvic misalignment, and SI joint dysfunction. So I know that I will always have to be careful and as soon as any signs of pain return I have to be proactive and avoid activities that flare things up.

It doesn't seem like it would hurt to try some short-term cortisone. It's when you take it long-term that you can run into serious side effects. But since it might not be a long-term solution I think it would be a good idea to see your physio again to see if they can help you sort this out.

Violet

HI Violet, thanks for your kind reply.
the problem is that the physio is also on holiday up until beginning of September so, I am on my own til then...
i will try the cortison pills starting tomorrow, I was in doubt as i thought cortison could irritate the nerve .

also rivotril is helping a bit, i will try to fight again...too bad as I am also leaving in 10 days for a 20 days holiday with the family in Corse ( France )..
love, Andrea

Andrea, I think that nerve irritation would be a rare side effect of oral steroids. Usually steroids decrease pain and inflammation.

I hope you will be able to enjoy your trip and keep your pain levels low.

Violet

Thank you Violet.
I ahve also raised Rivotril ( from 5 drps to 10-12 a day)...I hope the combination will help.
thanks
A

Hi all, I hope everything is better, at least for some of you.
a little update on my "back to pain...after 4 years"
after cortisone ( with no results at all) I got a first MRI at the end of july with clear findings on the soft tissues ( 7x5 mm linear defect in the deep transverse muscle)
second MRI performed 2nd of September ( so 2 weeks ago) showed that edema is gone and no sign of inflammation in the pelvis area were found anymore..

both Tesla 3 MRI performed by neuroradiologist ( same person).. I hope it is a good sign...

as for me, i didn't have a great summer, the pain ( which started the 11th of july) is still there..some days better, and some days way worse.
i am on Rivotril ( 8 drops before going to sleep) and started pelvic floor TP treatment 2 weeks ago. sitting on a cushion is mandatory, but I have no sign of remission so far... I am so afraid it could be entrapped somehow, and not just compressed due edema or inflammation..
I know it is a very discussed topic..but if the nerve is TRULY entrapped, how can I know it?
love to you all

AndreaM wrote: I know it is a very discussed topic..but if the nerve is TRULY entrapped, how can I know it?

Well, that's the problem -- it's hard to know. You've probably seen the Nantes team article http://www.pudendalhope.info/sites/defa ... iteria.pdf
on how to determine if you have an entrapment. There isn't much else in the scholarly literature that lists the criteria for determining an entrapment. Is your pain primarily on one side? That is one of the criteria.

Since it's hard to know, I think most people try a lot of conservative treatments before even considering surgery and they only try surgery if other things fail. I wish it was easier.

Violet

it is definitely on both sides, sometimes only one, but it changes from time to time.
pain is now at level 2/10...

So level 2 pain sounds like an improvement, right? Maybe your physiotherapy is starting to help again?

If you can keep your pain at a low level now, it seems risky to assume you have a nerve entrapment and go for surgery. I think if you give it a little more time things will calm down for you. Whenever I do something stupid and feel a little bit of pain creeping in, I just remind myself that I just need to be a little careful and things will calm down. It doesn't help anything if I get anxious about it.

Violet

Violet M wrote:So level 2 pain sounds like an improvement, right? Maybe your physiotherapy is starting to help again?

If you can keep your pain at a low level now, it seems risky to assume you have a nerve entrapment and go for surgery. I think if you give it a little more time things will calm down for you. Whenever I do something stupid and feel a little bit of pain creeping in, I just remind myself that I just need to be a little careful and things will calm down. It doesn't help anything if I get anxious about it.

Violet

I totally agree, but as you know, it is one step forward and three step back, every time...so sometimes it is difficult to keep the positive vibe
yes , level 2 is a good improvement, I hope it is the fysio helping ( I got 4 sessions so far, biweekly )
I want to avoid surgery at any cost, i don't know if progress were made in the last 6 years, but i recall that back in 2010 the success rate was low.
i will never heal completely as i thought i did as the pudendal was gone for 4 years and I forgot it even existed...
but maybe i can hope to get better for Xmas ( july - dec with this pace of improvement...cmon I am positive) so next holiday i will smile a little more.
many thanks
And