some of you would have read some of my posts, i have pudendal nerve entrapment and cannot have the decompression surgery because there is no funding in the uk.
you can try and get an IFR if you are lucky enough and live in the right postcode.
i was listening to my local radio about a programme, of people coming into the the country and getting surgery on the nhs and then not paying for it.
i wrote and told them i was livid about this as i was born and bred here and couldnt have an operation i needed because of no funding.
the radio station has asked me to come in and go on the radio telling people about my condition etc, i am going to do this as i can then let people know about the condition, as even some doctors have never heard of it and it will also be a good way of telling people with our conditions of this super website and all the good advice and help they can get on here.
i will keep you all posted when i will be going to be on, you never know i might even become a star
andrea
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chillijava
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Well done! Any way of getting information out there about pelvic pain generally and the PNE is absolutely fabulous. Definitely let us all know when it's likely to go out
all set for monday 13th february, not sure what time yet, the radio station is BBC RADIO NOTTINGHAM, i will post the time when i know.really excited to let people know of our problems, maybe then something can be done to help us all and not shove us in a corner
Well done. It took me 8 years to get a diagnosis. It is not a common condition. I feel that as pain is in the genitals it gets a iifferent response I got surgery for burst disk within a year but when my pudendal nerve became a problem it got treated quite differently. The internet was useful in helping me find where to go.
Brilliant will certainly be interested to hear it! That's the day I'm having a guided block at Manchester so the distraction will be good and can tell them there about it too.
thank you all sooooooooooo much, it is quiet a daunting thing to be doing, but i will try and make my fellow sufferers proud and if nothing else it will highlight the problems we have and face day to day and also tell people there is a wonderful place they can come to for help and advice, and that wonderful place is here
andrea
Hi, Chillijava, may I ask where you live in the UK. I have been undiagnosed for six years. I have all the symptoms that are now disabling. I send most of my day at home now as can't walk very far.
Hi, I also had the same trouble in Nottingham and I agree no one has a clue. Which consultant did you see. Also could I ask what test did you have that eventually diagnosed you.
pm me and we can talk about it , are you in nottingham
andrea
How do I pm you.
I find it so sad they always find something like this to make people turn against each other..TheSun, DailyMail, they are all guilty of this. If NHS won't provide funding... maybe it;s because they pay their managers 50k!
Ihi Andrea First i wish you al the best and hope you get the surgery . I have also PN Don t expect to much from the decrompression surgery its a method from docters from france dante. I red a lot about it on pudendalhope site but not al outcome is good.I am myself douphting about intern neurostimulation but that also has different outcomes.
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