Health Organization for Pudendal Education

Hi everyone!

My name is Jon and I was recently diagnosed with PN by my pain management specialist who is also treating me for complex regional pain syndrome, or CRPS which I have had for 4 years. He thinks the cause of the PN is part of the systemic spread of the CRPS, which has spread from my right hand to other parts of my body already. If you are not familiar with CRPS it is an extremely painful disorder, if you get a chance google it. When the symptoms started in my tailbone area, it is excruciating at times...I am scheduled for a ganglion impar block and some injections Feb. 2nd. I did some quick reading on some of the experiences people on this forum had. I know everyone is different, but I sure hope to get some relief! Anyway, just wanted to say Hi and give a quick summary...Thanks for being here!

Hi Jon,

Sounds like you are having a really rough time right now. I wish you success with the ganglion impar injections. Some people have had success with these blocks for tailbone pain. If you get significant pain relief from the ganglion impar injection, you may be able to get a more long-term procedure done. Have you tried ketamine yet for CRPS or have any of your docs suggested it?

Violet

Hi Violet,

I have considered ketamine treatments, and my doctor has recommended them. I go to USC and they just finished a new ketamine treatment wing. I have some friends who have had great success with it and some who haven't. I just need to decide for myself if it is the right way to go. I am currently taking meds and using cannabis. I was on opiates, but weaned off about a year ago. Very glad I did.

Jon, that's interesting that cannabis is helping. Would you say it helps primarily with pain or with other symptoms?

Nyt recently posted that lidocaine infusions help her more than ketamine so that may be something else to consider.

Good luck,

Violet

It helps with pain and muscle spasms. It also helps me with sleep, better than anything else I had tried before. Also, with chronic pain comes anxiety at times. Particularly when I am having a bad flare. Cannabis is good for taking the edge off...

I tried lidocaine infusions and they did not work for me. The relief was very short, a day or two...

Well, that's good to know that it helps with sleep. I remember just wanting to sleep as much as I could because it was the only way to get away from the pain.

Any advice on the best way to obtain cannabis? (Legally of course -- )

Violet