Hello All

[Gary]

Gary please stay strong though I hugely appreciate that it's not easy when suffering chronic pelvic pain. I try not to project too much into the future but take each day as new day and always manage to find something in that day to make me smile.
I really hope you are able to have the surgery you so desperately need. I had bilateral surgery in Bristol UK in Jan 2014 under the care of Mr Greenslade and Mr Wong. I think they have offered this on the NHS but don't quote me as I went private.
I really wish you all the best and hope you find s support and positivity from this forum.
Take care of yourself as we are all special and unique

France is my only hope. Bristol don't do 're do' surgeries.

I don't always suffer pain. If I stay still, as I did the first time when I had PNE, I can remain relatively pain free, though not malfunction free. I believe this is the key to surgical success - not damaging the nerve more than is unavoidable. So my life is basically 23 hours per day laying down on the sofa watching movies and documentaries. PNE again has ruined my career and probably put it into the toilet now that I am 45. If I try a normal active life though, walking, standing, sex etc then I end up in big trouble with pain malfunction etc.

[Gary]

I'm calling off surgery.

NHS England will not help me with the costs. They seem to think treatment for this condition is just injections. I think they are easily confused plus there is a lot of bureaucracy.

SO I am calling it off. I just plan on rotting now on sickness benefit until I am kicked off (tormenting the sick by the establishment is normal now in the UK) and then I plan to die.

If you are from the UK and you are reading this, you need to understand that you may or may not receive help for this condition. It depends where in the UK you live and who you plan to go and see.

They may try and fob you off.

Health care is for the rich.

[heidiloft]

Hi Gary,I am so very sad to hear of your difficulties with the NHS.Can you inquire as to what the surgery in France would cost?Is there any other avenue you could go down to acquire funds for the surgery?Life is just so precious Gary and it must be preserved no matter what.Can you arrange something with your bank....would your family be willing to help you.It is so hard to reach out to others but in this case Gary it is warranted.Having peudendal neuralgia is like climbing a mountain with a boulder tied to your waste...that boulder is our unrelenting pain.We all understand your feelings of helplessness and despair....I am sure that all of us on this forum have reached the bottom on occasion.Please don't leave any stone unturned.We are literally oceans apart but I am keeping you in my thoughts and praying that you find an answer that will put you on the path to healing . Blessings,Lise

[Laramarie]

Dear Gary
I have been following your posts and am so sorry that you have to call off your surgery. When I read that you had 10 years of a pain free life I was so happy for you because I am now almost 6 months post op TG surgery. I was really hoping and praying that you would get the surgery again in France and be pain free once again.
I understand how hard this is as I too lay on the couch in pain and wish for a pain free life. Please Gary.... Have hope and stay positive. Can you think of anyone to help you? I realize we lose a lot of our friends and family over this dreadful condition. Stay strong Gary, I am thinking of you and hoping for the best for you.

Lara

[Violet M]

Gary, you can apply for patient financial assistance (left hand menu) of the pudendalhope.org website. It wouldn't cover all of the costs but would help some if you qualify. Also, contact Judy Birch at this website http://www.pelvicpain.org.uk/ to see if she has any other ideas on resources for you.

Violet