Health Organization for Pudendal Education

I just submitted a lengthy post under Neurostimulation/sacral & rectal pain for background on this question.

I've had about 8 months of new, definitely neurogenic deep rectal pain, not much improved since stimulator removal. The last thing I needed was more pain than I had before the stimulator. Oxycodone & Zanaflex don't help. Unsure if the Valium/Baclofen suppositories truly help the spasms, or if they just help me relax and get brief light sleep. I can't tolerate the oral anti-seizure meds, though we're considering intrathecal pump. My doc says many patients don't get the same side effects with those drugs in the pump as with oral. Holding off on that procedure until I see Dr. Hibner or somebody else.

I see my pain doc late next week. Any suggestions for suppositories or other meds that have helped others with deep rectal pain (pressure-to-spasm-to-electric shock, lasting hours-to-days at a time)? I'm sleeping poorly (even very drugged) because it hurts to lie down and recline. This is definitely PN/sacral nerve, not GI. Don't have hemorrhoids or any localized bowel problem causing this pain. Is there some way to get heat up in there short of warm water enemas (not conducive to bed)? Thanks for the help!

In my reply to your other post I did say I had rectal pain but not as deep, tramadol helped me some and I also use an ointment that is actually put in vaginally and is a compound of gabapentin, amitriptylene, and a few other drugs sorry it is the middle of the night and my medicine is in the other room and I don't want to wake up hubby. I did post it earlier on in another topic. From what you said itmay contain meds you cannot tolerate but there may be some combo you could try or your pain doc could suggest.
Janet

Hi Quilter
Sorry you are suffering from this. I have it too as a resulf of a nerve resection surgery, throbbing type pain but at the entrance and at anal opening and butt cheek area instead.
Oral meds (methadone) and prior to that nucynta haven't helped...Butrans patch didn't seem to do much... from what I could tell.
For eight months I have been on methadone and am titrating off slowly.
Anyway I am looking into anal rectal suppositories made by a pharmacist at McGuffs compounding pharmacy in Santa AnaCA..
The pharmacists name is Clay..He apparently makes up a compound for you based on your needs. He starts with something milder .. and works from there. I jsut ordered from him and and havent received mine yet.. so I don't know what will happend but I got the info from some friends on another pelvic pain board, that have great things to say.. I know he seems happyg to work with you and you pain doc.
I am very sensitive to oral meds so hoping this will help.. His supps are non-opiod another plus!
So maybe thats something for you to try?
Hope this helps!
Kathy

Hello Quilter, I also suffer from deep rectal pain, - knife like, sometimes burning, sometimes traveling to other areas of my body the longer I stand. I have it all day long, my only relief is dilaudid 4mg and that gives me an hour or 2 at most.
My other meds are Topramax and gabapentin. Topramax gave me noticable relief, but not complete relief. I am in the middle of switching doctors myself after Dr. Quesada's sad accident. I have tried everything as well, including a SCS. I had that removed a year ago. It actually made me feel worse. Baclofen/Valium suppositories do help me, in addition to the dilaudid, if I have to go out. Also ice. Hot baths also help. But it is no way to live. I still want my life back! I am thinking about a pain pump but still unsure about that, really need to research that more. THis is a terrible Type of PN, I think. It's very hard to keep your mind off the pain, retraining your pain as they say. Please let us know how you do! You have to have HOPE!
~Josie