my thoughts

[spikehades]

(this is an email I sent to Helen, but I thought it would be good to air it)
The greatest obstacle I have found is to make medical practitioners aware of this condition. I think we really should try and get a campaign going to contact every primary care surgery in the U.K and get them updated on this pathology.
At least now we have some form of arbitration if a G.P does not recognise this condition and treat it appropriately (PCTs). When the G.Ps themselves commission the services, how can we force them to refer us to PN practitioners if they are not aware of the disease themselves.
I am under an NHS neurologist and have had a pelvic ultrasound, and a brain and full spine mri pending. I have already been diagnosed with PN by Dr Greenslade and Mr Wong,but Im going through the motions to exclude anything else. I have had to be very pro-active with my G.P and persuaded her to do blood tests to rule out any autoimmune disease and prostate exam and test. The last thing I want is to be diagnosed with Chronic Abacterial Prostatis and then be left out on the pasture. I worry for those people who lack the tenacity, experience or education to be able to negotiate the medical process. There must be so many people out there who can be treated but just havent questioned their doctors.
My condition hasnt gotten worse and has gotten a little better, strange feeling in the rectum - gone, pain in the rectum - gone, urinary urge - gone (for now), shooting pain - gone, soreness gone. I still have tingling/crawling sensations and if i sit for too long a brning sensation throughout my whole perineum, but that dissapates after getting up. So overall not as depressed as i was.

Keep fighting everyone, there is good news on the Horizon, there are better pain drugs in development and also new and innovative nerve transplant research going on. With better imaging technologies, they should be able to crack this. The most important thing is earliy diagnosis - we need more awareness.

[Charlie]

You make some excellent points. I especially agree with this part.

I have had to be very pro-active with my G.P and persuaded her to do blood tests to rule out any autoimmune disease and prostate exam and test. The last thing I want is to be diagnosed with Chronic Abacterial Prostatis and then be left out on the pasture. I worry for those people who lack the tenacity, experience or education to be able to negotiate the medical process. There must be so many people out there who can be treated but just havent questioned their doctors.

I am sure there are many people who could be helped but they get the wrong diagnosis or are even told there is nothing wrong with them.