Ok......the Bristol team are far more compassionate than the London team .....this comes from one of the top PN Physios I have seen.......however they try to hard to try and fix you when we are not necessarily fixable that's the hard facts I am afraid of this condition or any nerve condition.......Bristol have done about 20 PN Surgerys with some dire consequences one poor lady is now using crutches had to give up her teaching job......and has had no after care and the specilaist has refused to see her anymore.....the Bristol team went over to France to "learn" how to do the surgery .......the French team have done 4000 plus.....the physio I saw also had PN for two years caused by a UTI.....and she said if she ever needed surgery or a proper evaluation she would only let the French team do so.
By the way my mother also has PN.....and has had a nerve block at the NHNN with absolutely dire consequces.......you are near a guy called David McCoid in Bristol he had PN for 14 years and has three failed surgeries in America......he now teaches something called restorative exercise by Katy Bowen look it up.....there are some good results out there....
This time last year I was ready to jump,off a bridge.....turned up at casualty like you desperate.....but I am 90% better......I can sit for a couple of hours.....and I personally never got into the habit of using a cushion, but I work for myself and could manage my day as I wanted.....however much pain I was in I wallked walked walked and still do with good posture.....as the worst thing for us is to become stagnant as this stops blood flow, and tightens the pelvic floor further.....I have also had intensive antibiotic treatment for a bladder wall infection .....which was/is also part of the jigsaw.
What you have to remeber is EVERY investigation you have done lays down scar tissue and aggravates an already aggrivated nerve......I had an MRI a neurography very expensive which rules out rather than rules in....there are NO definate tests that can say it's PN there are two other nerves that could be the culprit also but nerve pain is nerve pain and it's the pits.
In the early days I iced the area slept with a tin of frozen baked beans wrapped in a towel between my legs, learnt to turn over in my sleep without waking ........havnt needed the beans this year at all.......however I still most nights lie on a mini hear pad on high on my lower back/butt area to relax the area and this works very well.......sometimes sleep with it also.....as my pelvic floor can ache alot when it's period time. Learn to breathe properly....sounds mad but helps a lot , breath as if your breathing out of you vagina so your stomach rises and not your chest that way the pelvic floor will drop and flop as you/we have PFD pelvic floor dysfunction an over tightened pelvic floor like cramp in your calf muscle tighteneing around that pesky nerve.
Give up food that makes you bloat.....use a squatty potty for the loo.....hold one nostril and breath through the other that way it can only relax the pelvic floor......as I said earlier my mother and I both have PN she jumped in and took whatever was thrown at her and is in a right state, I went the very conservative route and so far at the moment it seems to be paying off.......the Noratriptaline can take up to three months to work.....I did four months of ami but I am now on nothing.....so if possible sleep , exercise, rest, pace, eat well .......I also take vitamin D3, probiotic, slow release iron B12 and 6 and zinc these are all nerve skin pills.....I have more energy than I hacve had for years since taking these.
I also went to a talk in London the other week on PN/vulvodynia and I was very impressed with the physio there her name was Lucia Berry I may go and see her to see if I can help along the last bit, she also does pelvic floor scans which I had done recently really worth having done as it showed exactly where the muscle was tight and represented where my pain was/is......also showed my prolpase is minimal this was done lying down and more importantly standing.
9 out of 10 sufferers of chronic pelvic pain do get better ( not as was before) but a better quality of life however it takes time.....as in it can be years.....as one of the very top nerve Gynaes told me we are in a time of fix me now.....however nerve pain is the last frontier of medical science and they just don't no enough yet.
