pelvic pain pudendal nerve pain info to the masses

hi all

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

15 Replies

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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

  • thanks will do

  • How fantastic! Would definitely like to listen to that, well done! The more people know about it the better! Xx

  • Good for you! Hope it goes well, look forward to hearing all about it and any responses the come as a result of speaking out on the radio.

  • 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.

    I live in Somerset so will try to listen on line.

  • 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.

  • Brilliant good luck

  • 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.

  • i live in nottingham and i must say it has been a struggle to get diagnosed and no one in nottingham had a clue

  • 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!

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