Health Organization for Pudendal Education

pizzarios wrote: I have a friend who can "hook me up" w/a ct or MRI ( not sure if it's 3t ) for FREE . I know it's not the potter, but it will have to do for now. Any recommendations on. "script" for the radiologist?

Since it's just for the SIJ, either one should do the job. The only recommendation I havefor the script is : "Evaluate sacroiliac joint".
Best wishes,
Karyn

pizzarios wrote:TriMaverick, is zone 2 training essentially just warming the body up just enough through exercise? Do you suppose I should slap in a tube of lidocaine and attempt a jog? My beloved yoga only seems to worsen my pain afterward . Running was my other preferred activity in past life before kids/pain. Do you think it's worth a try? I have not attempted a run since urethral/vulvadynia pain became constant 2 months ago. Is there a link where I might learn more about this zone 2 thing you speak of?

Actually Zone 2 is the next step up. Zone 1 is basically warm up and cool down. You probably should consult someone to rule out musculoskeletal problems that could be exacerbated by the activity. I used loosening exercises from Chi Running before I warm up.

You can get some idea at http://www.brianmac.co.uk/hrm1.htm

These zones are generally based on heart rate, but it's not that absolute. Books on endurance racing such as the Triathlon Training Bible discuss this kind of training; maybe not appropriate for someone trying to ease back into fitness following prolonged injury.

Anyway keep up the swimming.

Being in the pool these past almost 5 years has been pretty much pain free for me. I figured it was just the bounancy. What ever the reason, it is a good thing. Another good thing is that my past surgery last May is showing me less pain, less inflamation. My sciatic nerve was being invaded by my very damaged piriformis muscle. Dr Chambi decomprssed 4 severely compressed nerves.
In a few weeks I wil be returning to Ca. to have my right side taken care of. Isn't it amazing how the same flippen thing is going on-on-my right side. ?
I am on 3000mg. Of gabapentin a day. Had my physical this past-week. With medicare they give you a test to see if you have altzeimers. Well_ damn it I flunked. The way the nurse looked at me after was kinda scary. Like, oh you poor thing. I tried to tell her it was from the darn gabapentin. Oh well.some day maybe I will have my mind back.
Iwill keep you posted with my up coming surgery. The only thing good about this is that I am on medicare with a supplement. Love to all of us poor things. Ellie

Good to hear about your post op improvements albeit some time on Ellie. Think it has to be expected after 4 nerves. . . . What exactly did Dr Chambi do with regard to the P muscle, is it repaired? You may have already posted this, sorry if so, I can't remember.
It will be interesting to see what another test would be like after you stop taking gabapentin. They will think you have the cure to Alzheimers
take care,
Helen

He left my P muscle in contact. Cleaned up the scar tissue , He called it a bifid , meaning two muscles were growing . He said the P damage was from an old injury and all of the scar tissue was compressing on the nerves against my pelvic bone.. , including the pudendal... He said to me.. "It was awful Ellie, it was awful". am sure, by the way I feel that he will find much of the same on the right side. I sure do wish this was over with becaue I am miserable... 5 years is enough of this... I know many have suffered longer than I . Dr. chambi told me that it would take a year for the sciatic nerve to heal and up to 3 for the pudendal and others... I am just so grateful to have found him... I asked him how he released the nerves compared to how Dr. Antalok did them.. He said they decompress the nerves away from the spine, meaning distally, Dr. Chambi realeases them proximally, meaning along down the spine.. oh, yes, my P muscle was growing into my sciatic nerve, My sciatic nerve was misplaced and they found it electrical stimulater..... enough of that.... Elie

I think we sound fairly similar Ellie,
Dr Greenslade noticed that my sciatic nerve goes through my piriformis muscle when he did an ultrasound guided injection. So my sciatic nerve isn't split (as some can be) but the muscle is, although only because the nerve runs through it, it might not be the same??
Which other nerves were involved for you? So far I have been diagnosed with sciatic, pudendal, post femoral cutaneous and cluneal. All of this does make total sense because of my symptoms. Cluneal (middle and inferior not superior) gives me my numb bum. Pudendal gives the usual pudendal stuff (shooting, itching, foreign object in rectum only sometimes thankfully , numbness) Well you know the score, won't go on
I have just sent an e to Prof Robert in France to see if he can help me. Honestly there is NOTHING going on in the UK at the moment. So if there is a resolution I will just have to bon voyage
Actually that's not quite true but it costs far less to go to France and there is only pudendal decompression available here. We P people are a bit more scarce it seems. Try telling our problem to the parochial folk in north east England. They just shake their heads wearily (heard the malingering, all before, BORED!!) and say go to the pain clinic. . . . I have a diagnosis from a Dr. who knows the problem exists! they take no notice
I am perfecting my Gaelic shrug,( as in $@D them) and hope to be off to France.
take care,
Helen

Helen, I wish you could come to Ca. to see Dr. Chambi.. I flew out there, on a wing and a prayer.. I did not know what was going on inside of me.. Karyn and Paulette said my symptoms were consistent with the sciatic and piriformis... so here are the nerves he decompressed... Left sciatic and pudendal . decompression of the posterer cutaneous and inferior gluteal nerves.. Intraoperative testing of th gluteal area..
surgery#2 decompression of the superficial and common peroneal nerves... I am sitting at my hubbys computer, I will pay for this... My tablet is just not working or is my laptop.. I have to get something different... sometime. I didn't go through all of the testing as so many of you have. In fact I never did associate my pudendal along with my sciatic .. Not until 4 years later... so little did I know.... .. I just wrote to Dr. Chambi and spelled it all out.. He said , he would see me for a consult.. The rest is history... All the best to you Helen dear... let me know .... Ellie

Well I have taken the first steps to go for surgery in France Ellie, with Professor Robert. After all his team were almost the ones who instigated this type of surgery and like Dr Chambi, Professor Robert is a neuro surgeon.
I have found that they can't do anything apart for pudendal decompression in UK, so USA and France are the only options and it is just a hop and a skip across the channel It is FAR cheaper too
I was just like you, I didn't think of pudendal issues at all it took me 2 years to make that connection, when I came to this site tbh. Well again hadn't even heard about it (or bleedin' piriformis come to that )
However, a PT realised that I had a piriformis problem and I already knew that the scaitic nerve was involved, so things started to fall into place after that.
The more you learn, i.e. which nerves serve which areas the more my list has grown. Trouble is you can tend to sound like a hypochondriac diagnosis seeker to some then; just because no one else seems to be interested in pelvic nerves up here . . . . . . I hope professor Robert agrees to the op.
I was even thinking that I should just to concentrate on my pudendal symptoms to make him (well them, it's a team effort) more keen to go ahead but realised how stupid that would be. I have heard (only second hand) of one lady who has had the decompression surgery with this team at piriformis level. I'm sure there must be more.
I have written to Dr. Riant in Nantes who is one of the team who will examine me (Dr Labatt is the other) They will still insist on a pudendal block and I think others too.I hope I 'pass' their tests I do know they have decompressed cluneal nerves as well as many, many pudendal of course.
I still have to be lovely to my husband and convince him to sell his motorbike. You have no idea what a wrench this will be for him. I will have to promise to buy him one again once I can work after my undoubted recovery.
I have told a few people about my plans now and it is all seeming a bit more real and achievable. The whole thing has really got me down so much that I actually didn't think I deserved to be helped, in fact as soon as I typed that I still have doubts.
Got to pick myself up and out of that silly mindset.
Oh well its in black and white now . . and anyway the summer is almost over, what does he need a motorbike for when it's too cold and wet to ride doubt his smile will be as wide as this tho'
Thanks for your lovely message,
H x

Helen,
Fantastic news, you deserve this very much, not only have you researched for this but helped many others along the way! I am sure hubby is wanting you health above all ( even if the motorbike is sacrificed). You also have provided so much fun to the site with your stories and trials and tribulations so pick yourself up and look towards lower or maybe even pain free days ahead! Keep us posted and best of luck, take care.
Janet

Oh thank you Janet,
I look on us (as well as many others) as the 'Meeter's and Greeters'.
You do such a good job welcoming people with good advice, care and consideration.
Still working on the motorbike however. . . . selling the house has been mentioned so far ~ No way! ~ Haven't got to the beloved motorbike yet, but will do
Thanks again,
Helen x