Health Organization for Pudendal Education

Hi!
I do hope you take Helen's advise and don't go to a neurologist or you will end up in a cycle of miss understanding! Also don't expect your chosen p.n.e specialist to just be able to push a button and relive your pain! But it will be the first step of the way to gain tools(the correct meds) and pt to help you be able to take over some life again! This affliction tests us all!!! And strong will and determination will get you to the right professional .
Chin up
Anne

i know its not going to be easy, but thats just what life is like now, i cant sit, so i cant go out , i cant drive just stand and lay.
i do have private healthcare which is not cheap and getting more expensive as i keep using it, but i think i will see if i can get things sorted more quickly by using it (its not free i do have to pay for it) but i need my life back.
i have a mother with altzheimers and she needs me healthy and able to cope which i am not at the moment


andrea

Dr Greenslade will be perfect Andrea. He is very knowledgeable and will be able to say if he thinks you have PN or if it could be any other pelvic nerve pain problem. Good choice.
My Mam has Altzheimers too. Don't worry Dr G, is the man to see
Anne's suggestion of physio is a good one too, I know that when I had private health care I could use a certain amount for physio which didn't take anything away from other medical appointments and treatments. I suppose they are all different however.
Let us know how it all goes.
Take care

hi helen
thanks for that, i am seeing the new gynae tomorrow but its not the one my gp referred me to and i dont think this one knows anything about pn, but we will see.
i do see a lovely endo privately and i have emailed him about my problem and he says if i am having problems he will happily do me a referral to a pain doc of my choice.
i am armed with symptoms and my hubby to try and get a referral from this gynae, i will let you know the outcome

andrea

I did see a spinal surgeon who looked at my MRI and also examined me. They concluded that I did not have a spinal problem and referred me on to a pain specialist.

just an update
went to the hospital to see the new gynae today, what a waste of time they didnt have a clue what i was talking about but did say it wasnt a gynae problem and have now referred me to a dermatologist.
i have made an appointment to see my gp for a referal letter to see dr greenslade.
i do have an appointment with dr greenslade 4th october ages to wait as this is the first 90minute appointment they have available and i have rung bupa who have agreed to paying for any treatment, so i am on the first rung of the ladder, widh it was sooner but at least someting to hang on to
andrea

Flippin' heck October! and that's with BUPA! We certainly need more PN specialists here, and that's a fact. I wonder how long the NHS wait would be?
Glad you have the next step to the way forward
Helen

hi helen
i was told by dr greenslades secretary the waiting time to see dr greenslade on th nhs is 52 weeks!
right now i am trying to keep positive and take each day as it comes but its soooooooo difficult, none of the pan meds seem to work and i have constant burning of the vulval and anal area on one side which i cant get any relief from, i can never wait for bed time as this is the only time i get any relief for some reason it doesnt bother me when i am asleep only when i get up in the night or morning to wee does it start.
i am hopeing this is a nerve problem otherwise i dont know what it is, its a ************ when you have to try and diagnose yourself because no one else will!

andrea

I'm sure Dr G will help with the diagnosis and the treatment from there. You are so right about having to diagnose ourselves, it's almost a medical crime! (is that too strong? probably injustice then!!) The problem with this can have a knock on effect especially if, like me, your GP isn't on the same page and hasn't even bothered to pick the manuscript up tbh. Maybe she prefers fantasy rather than fact? I have an appointment to see her next Wednesday. That will be interesting . It comes to something when the patient has to seemingly prove that a specialist (Dr G) does know what he is talking about, re pelvic nerve problems, after all he trained with 'the main man' Professor Robert in France and that she could just be wrong thinking that the problem is my lower spine, when the expert (Dr G) say's it's my PELVIS!!
I promise NOT to shout at that stage
I have a fantastic week ahead of me next week. Tuesday I have to face a tribunal which has been a farce, just not in the least bit funny. (won't bore you with the whole shenanigans) The debacle as to whether PN and PS (piriformis syndrome) exist has been sorted. The lovely Lady Dr. acting on behalf of the Secretary of State (SOS), She say YES!! ( never seem to be able to do things by halves, I am almost on nodding terms with SOS)
She also informed the tribunal (for industrial injuries) that PN can be caused by trauma. Hooray!! However I still face the battle to prove that PS can be caused by trauma, cos she say, no. Roll on next week, I am SO prepared. They will probably agree with me about the trauma bit and then say, but we don't think you have either PN or PS so on your way. . . although, I think they just like having me around as they must now know that I will just go to a higher level rather than give up. Unless they actually do break me.
If no one hears from me again after Tuesday, the government got me
Take care,
Helen

hi helen
i dont think anyone would break you, you are like me once you get a bee in your bonnet its all out war.
i have to go to my gp friday for my referal which isnt going to be easy as last time i went he said my symptoms are psychosomatic, i think thats because i am always there with some kind of problem. i cant drive there so i am going to have to walk up hill for 2 miles there and 2 miles back, no mean feat when you have fibromyalgia
good luck with your trials and tribulations for next week

andrea