Health Organization for Pudendal Education

Alan1646 wrote:Andy, I understand from what you've written that you were diagnosed with PNE at Bristol and that nearly two years after an operation there you are still experiencing very significant pain, which prevents you from working and other everyday activities. I see that some people have suggested that all is not lost and that other therapies may well help in the future, and some therapies have been specified.
After seven years of pain myself I have come to question the diagnosis and treatments I have received for my diagnosed Pudendal Neuralgia. While I do have pain in some of the distribution areas of the nerve, I am now unsure exactly what the cause of the pain is. I have been told , vaguely, that the nerve is probably irritated, but no-one has explained how. Like you, I've had some periods when the pain was a lot better, and at one time it was so improved that I nearly booked a train journey for a holiday to somewhere two hundred miles away-something I couldn't contemplate now. Like many other people, I've found that Valium significantly reduces the pain, to the extent that I can do things like take a car journey of one hour or sit for longer periods of time. Again, no-one has been able to explain why, except for a vague suggestion that it relaxes the muscles. When a consultant mentioned to me that Valium also has a psychological effect, I felt annoyed and hurt at even the very indirect idea that there was something psychological involved. Now however, after much reading on the topic, I've come to understand that pain is very common in psychosomatic disorders. I've read what you wrote to Ezer about how your symptoms include not only pain, but also changes in the temperature of your skin/body and that you are 100% convinced that you do not have a mind/body or psychosomatic illness.
I have thought back to what was going on in my life in the months before my pain started and can see that although I didn't fully know it at the time, I was under a lot of stress, for a number of reasons. I've now decided that it's very likely that I have a mind/body disorder. I have completely got over any shame regarding this and now feel very optimistic that there is a way out of the pain. People consider many treatments with zero evidence for their efficacy so why not consider and investigate something else like this? Reading Suzanne O'Sullivan's book would make anyone think twice, I believe.
"if you want to keep a secret you must also hide it from yourself. " George Orwell 1984