Health Organization for Pudendal Education

Joy, it is where Maigne's originates from but like PNE Maigne's is difficult to diagnose.

http://www.chiropractic-help.com/maignes-syndrome.html (http://tinyurl.com/a87jgcb)
http://www.sofmmoo.com/english_section/ ... tralie.htm (http://tinyurl.com/aogzp8e)

Sure Karyn, I'll add it to the list of publications.

Violet

Thank you Violet
I`m compiling all this info on PN and Maignes to discuss with my GP. Because my physio came to the diagnosis that the pudendal nerve is causing me problems - without any help or prompting from me lol- I`m determined to get this sorted now that I have `professional` back up.
I believe I have one or the other of PN or Maignes- or even both?
I`ll let you all know how it goes and thank you again for your time, help and kindness.
take care
Joy

How good of your physio to do that for you Joy. There are so many of us on here who had a physiotherapist diagnose a pelvic nerve problem first.
After all it is usually a good clinical examination that will help a PN aware Dr diagnose that problem and a PN physio session is doing much of the same thing.
I hope that your GP is open to her diagnosis, that is all you need really then it's just a question of a referral.
Pleased to hear you are progressing,
Helen

Just when I was getting somewhere.....my GP says he cannot refer me to Dr Greenslade until we have exhausted all local resources!!!

I only managed a telephone appointment with him to hear this `delightful` news and never got to the bit about WHAT local resources?

And what`s made the news worse is awful BM pain today...bringing tears to the eyes stuff that`s lasted 14 hours so far.
I`ll phone tomorrow for another appointment, for some sort of pain relief.
In fact I think I may phone for an appointment EVERYTIME I have pain - so my doctor gets as fed up as I am and refers me......
I`ve got pregabalin on board, tried tramadol and ice and no relief whatsoever. Any suggestions really would be really appreciated from you all who know so much more than my doctor.
Thanks in advance!
Joy

Really sorry to hear that you are in this awful state. . . and I mean GP wise as well as pain!! GGGRRRRR!!!!!! Local resources Ha!
I became my own advocate just as you are trying to do Joy and made fabulous progress. OK I paid, as as was SO fed up, plus I was used to my good old BUPA and didn't even think that I would not get referred (oh silly me) and had a lovely GP at that stage, who was standing in for mine (who was on long term sick leave. I wish I could say something ironic and sarcastic about that, but she had actually donated a kidney to her sister )
Any way, so glad she had, as I did get somewhere with this lovely new lady and I managed to get to see Dr G as a private patient thru her. I had already got a diagnosis from Dr Filler a little while before seeing him and although Dr G did wonder if Dr Filler was allowed to 'practice' here he totally agreed with his diagnosis. Onward and upward from there as I got a letter a short while later for an NHS appointment to go back for treatment with Dr G.
This continued for over a year with 5 treatments and a phone appointment which resulted in Dr G recommending me for decompression surgery in France.
What a huge joke!!
It was discovered that my referral for treatment in Bristol have NEVER been granted and had actually been refused.I was Easy jetting up and down to Bristol, for steroid and botox injections on an admin error (thanks Bristol )
Thankfully the botox did work, but only for a while and of course I had, as did my GP (minus 1 kidney now) all of my medical reports from Dr G saying piriformis pudendal blah blah send her to France... Their answer. . . . .er.... lets think. . mmmmm NO!
So for all of my sterling efforts I am back 5 years later exhausting local resources, and wasting NHS money doing so. Actually the very recent nerve conduction studies have shown pelvic nerve problems so that was a result, although totally unnecessary as I already have a pelvic nerve pain diagnosis. . .. I have also now been for at least 7 physio/acupuncture sessions that made absolutely no difference at all . The very stupid thing is that after all of this time I knew that they wouldn't. Had them , paid for them, no good!
I am all for patient advocacy now, it could save them a fortune if they would only listen.
Enough of my whinge.
In hindsight I do wish that I had called the emergency Dr out in the middle of my intermittent 2-3 hr repeated electric shock attacks. At least then they could have seen the ridiculous pain. I do hope that you do as you are saying and bombard them. I encourage you to as long as the 'mad' tag doesn't stick. . . you do need to bear that in mind.
I would also encourage you to make use of the local pain management resources however. Please let us know what local resources they are hoping to employ for you.
I would really like a cost breakdown as I'm sure it is just as expensive to run after the wrong thing for ever. Well lets hope it isn't forever.
Take care,
Helen
antidepressant like cymbalta along with the gabapentin may work?? Up the gabapentin dose?? I was up to the largest dose on gabapentin eventually which did at least help me sleep.

Hi Helen
I`m angry for you, and for all the years you`ve had wasted running around trying to get well again. Actually, thanks you`ve done me a favour because I`ve a GP appointment this morning at 10.30 and after reading this, I`ll hopefully still be riled enough to bring out my assertive side and get somewhere with him.
I`ve already spoken to my GP on the phone ( thats the system here, they phone and decide whether you need an appointment) and he wants to examine my bum again. Hey ho - how many times they need to look up there is anyone`s guess. I`m in minorish spasm this morning so with a bit of luck he`ll lose an instrument and then start `listening` to me.

As I said in an earlier post my physio`s been brilliant and she`s arranged for me to see a `womans health` physio- plus I`m to see the pain clinic on Monday. So I expect these are the local resourses that`s meant.
My husband and I have discussed whether to see Dr Greenslade privately for an initial consultation and we`re increasingly realising that maybe this will be our only option.
I`ll let you know how it all goes.
catch you soon and thanks for all your help. It makes such a difference knowing I`m not alone.
Joy

Hi All
An update on my diagnosis journey:
As planned I went to the pain clinic today and saw a lovely doctor. He got out his display skeleton of the lower back and showed how my main pain is exactly in front of the arthritic sacriolliac joint. Which come to think of it, it is!
Say, if the stabbing like pain was an actual knife, it would go through me and hit the damaged joint, bang on target.
His opinion is that he thinks my pain is coming directly or indirectly from that joint. He`s arranging for me to go for a steroid injection in the sacrioliac at the day procedure unit at our local hospital.
He noted that I had stiffness at T12 but advised I carry on seeing my physio about that.
I thought the arthritis in my left sacrioliac was mild and really didn`t expect this just yet, I thought he`d advise me to keep on the pain relief and see how it goes- with maybe an injection later on? Instead he`s put me down as urgent and said he`ll do the procedure himself. If it works, he said it would give me 6 months pain relief, it`s low risk and the glory is, he can do it again after 6 months.
Phew- could this all be this simple for me?

I hope so because I had an awful appointment with my GP last week. There`s no words to describe how negative he was toward possible PN or PNE. I thought of you Helen (if you`re reading this?) I was left with `where do I go now?` and almost cancelled today`s pain clinic appointment. It was an hour`s journey and I was thinking that I`ll just have to live with this pain and do I really need to keep chasing negative appointments? Instead my husband convinced me to see today`s doctor and see where that leads us.
I hope upon hope that it works - but if not, I plan to ask for a referal to Dr Greenslade privately.
It`s nice to have a plan B again. If GP`s like mine and Helen`s had pain in their private parts as well as through their pelvis ( like mine) we`d soon see more PN awareness!
Take care everyone
Joy

Best wishes with your injection, Joy. Do you know what type of medication he'll be using?
Kind regards,
Karyn

I'm so glad that you have had such a responsive reaction from the pain clinic chap. What a difference this acceptance and positivity can make, especially with the future SIJ shot working , as I very much hope it will.
Of course your GP may very well be right. The local pain resources may be all that is required for you Joy, but to actively dismiss PN is very short sighted to say the least. It's all a bit of a pelvic detective game but at least you will soon be able to rule any SIJ component in or out.
Helen

Sorry for the delay in answering Karyn. I`m not sure exactly what medication the doctor will use, he just said steroid.
I received a very nice letter from him today ( a copy has gone to my GP) saying it will be an xray guided injection.

quoting from his letter:
`Joy is suffering from a deeply intrusive left lower sided back pain, buttock pain and deep left sided groin pain. It is worse when she mobilises and when she sits for any length of time. A recent MRI scan revealed some degenative changes in the left side sacroiliac joint and given the anatomical presentation of her symptoms I feel these problems can be accounted for by the joint changes. Given the results of the scan, I think an x-ray guided left sided sacroiliac joint injection is entirely appropiate.`

I spoke to my physio also and her opinion is that the pudendal nerve is involved too. She`s a star and has worked to find me a pudendal aware PT locally and she arranged me an appointment next Monday.....and would you believe it but the pudendal aware PT`s in my home town.
Onward and upward guys...I`ll keep you posted.
take care all
Joy