Hi Ladies ( the miserable thread)
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Wanderer........the PN gives all sorts of different pain for different people, from numbness, burning, stabbing,shooting in the pelvis up the back, down the legs, one sympton or tho whole lot. The top top expert on the subject is in " Nantes" France a Professor, I have found by digging deep many of his papers. You have to think of your pelvic floor being in constant cramp like your leg, it is tightening around the nerve/nerves pinching it/them, now there are more nerves than the Pudendal nerve, however this is more often than not the culprit, and in a way it is possibly immaterial which nerve it is, the only different being the PN if you look at it is I control of sooooo much down there, and IBS sufferes are more likely to get PN, and IC will have the PN nerve involved as does Vulvodynia, your local GP and probably uro/gynae won't know about this nerve, as believe it or not they are not taught about nerves particularly in there training, and nureosurgeon don't really get involved in the pelvis nerves, that's why we are up a creek without a paddle
I have just got back from London to see one of my three specialists this was the uro/gynaes I still have an infection UTIS that is now imbedded in my bladder wall, I have been put on Vagifem and local oestrogen for outside,he also found an old stitch from 28 years ago from my huge episiotomy is going to be left for now as the last thing we want to do is start cutting an already aggrivated vagina, when the specialist is pulling faces that resemble this
you know all is not well.
I go to UCHL in two weeks this is the only pelvic pain clinic in the country, anyone can go there it has taken me seven months to get my appointment as they are so busy with pelvic pain , I saw one of the Doctors in February who told me to go onto his NHS list as I had major issues and self paying.
I had something called an MRI Neurography which is for all the nerves from the spine down and everything in the pelvic area, I have nerve impingement at L5 which is what controls the genitalia, and the PN nerve runs very close to all of this , as once one nerve starts firing off it gets others to join into the party, even if they are fine it is called " centralisation" which I also have, I get burning mouth syndrome and sensations up my spine also, as the PN sends messages up the spinal cord to the brain, which is why they peu put you on the likes of amitriptyline to try and break those messages to the brain.
If you also have lower back pain, that is actually pelvic pain as anything from the belly button down comes under the heading of pelvic pain but we are only looked at as the vagina, the back the brain not as a whole, which is why I am going to the pain clinic, as they have specialists from the brain downwards.
I used to get stabbing pains in my vagina up to my cervix, that is the very first real pain I had and that is a PN pain.
Where do you go from here ............million dollar question.........I have spent thousands literally, I have a diagnosis which has stopped me having lost lots of unnecessary investigations locally by docs who didn't have a clue...........is there a miracle cure for us all no........as nerve damage is probably one of the last unknowns still to theses specialists.........does physio help, honestly I don't know .............but if you think you have VA and you are not reacting to oestrogen then you have nerve damage...........and I personally think VAGIFEM woops VA is a form of nerve damage.
Sorry about the mistakes I know they are there but since my iPad had has been upgraded if I try and correct a mistake it looses everything I have written.
My daughter meat meet me after my appointment today and said I have to smile or be happy about three different things aday. She sent me a quote when this all started and I remind myself of it regularly " In order to rise from its own ashes, a Phoenix first must burn " .xxxxx
