Health Organization for Pudendal Education

I really need to talk to somebody as I am having a hard time even writing or getting through this. I am sorry to be so desperate, but I don't know what to do.

Hello Helpme: Your story is incredibly heartrending as it is all to familiar to exactly what I went thru beginning in 2000. First, I just want to say that in my opinion the very best advise you've been given so far is to be your own Advocate. It's worth repeating and capitalizing it once more just as carolynm did in her post to you. You must be your own ADVOCATE as no one else can - not your spouse - your kids - your parents - no one - no one but you can get you the help you need. Please take that to heart. I, like you, was going nuts with pain. Up at all hours - no sleep - friends thought I was crazy etc, etc. and mind you in 2000 Dr. Renney in Houston had just had the surgery from Pr. Robert in France and was still in the process of learning the procedure. There was only Dr. Antolak @ the Mayo Clinic - that's it - I, like you, was DX with IC by my urologist who had the crazy idea that extending my bladder would be of benefit to me. All that it did was send my pain level from a 5 to 10 overnight. My urologist was giving me Percocet which did not even touch the pain. I, like you, could not sit and also like you, was only able to find relief sitting on a toilet. The thing you need to know is that no 'regular' person knows what to do with a individual in this amount of pain. For me it was impossible to think straight while in such pain. My urologist knowing not what to do with me - sent me to his friend who was a pain doctor. I'm not advocating narcotics - but as a 1st step make an appointment with a pain doctor - and if you can find one how understands pne pain better yet. But, in order to make that happen you must become your own Advocate. Pick up the phone tomorrow - 1st thing and call your psychiatrist and ask for a referral to a pain clinic/doctor. If your psychiatrist won't do it then call your regular family doctor for a referral. Don't let anyone or anything stop you till you have that appointment. Cause that appointment will give you 'HOPE' and even above being your own advocate 'HOPE' is the key to getting thru all of this and getting to the other side. As your pain is getting under control, then you need to be your own advocate again, and find a doctor that specializes in pne so that you can have the proper tests read by an expert in this field. You need to get on the Internet and research, research and then research some more so that you settle on an expert that you feel gives you the best shot. Then set this appointment. The combination of both a pain doctor (who is on your side) and an appointment with a doctor that specializes in pne will act to settle you down that much more -- because at this point you have even more HOPE. Being your own advocate & setting these appointments -- these acts give you hope that your pain will eventually diminish - that someone will understand you - that you'll find relief. I've been where you are, without the resources that you have at your disposal. In the morning take the 1st steps towards ongoing hope...

and HELPME:
Larry did a great job telling you the exact steps in which to proceed. Not all pain management docs need a referral. Mine does not. YOu can just call and make the appt. Tell them how much pain you are in and that you are feeling desperate, maybe they can get you in sooner. Do you have some pain pills to take? Conventionally narcotics don't work well for nerve pain but you can try them they at least take the edge off. You are going to need that in combination with a neuromodulating drug, like Neurontin or Lyrica. If you can't get into the pain dr right away, your GP can get you going on those. There is a lot to take in but you will find yourself so obsessed about learning more that you will educate yourself very soon and know everything there is about the disease. This too will empower you to do the things you need to do.

Please write us back and tell us how you are doing, please. We care.

cari

havent heard from you, how are you? I'm worried...

cari