Health Organization for Pudendal Education

Hello
I'm just wondering how long some of you had to take narcotics after having decompression surgery? I understand we are all different and heal at all different times...... It is very individual, I do get it. I know my healing may take years. I am now almost 8 months post op L TG decompression. I was very entrapped in scar tissue around SS, ST, PN and pudendal vein, so my recovery I expect may be extra difficult for me. I am coming along but still take opioids daily, I have come down off my fentanyl patch which is amazing. Just wondering how long others needed to stay on narcotics/ opioids after having decompression of the pudendal nerve?

Thanks and take care,

Lara

Hi Lara,
I didn't take medication after my surgery, but wanted to congratulate you on coming off the fentanyl patch! I agree - a truly amazing achievement!
I wish you the best with your continuing recovery! One baby step at a time ...

Kind regards,
Karyn

Thank you Karen! Did anybody else out there take narcotics after their surgery? I hope I'm not the only one?

Hi Lara,
I am still taking narcotics but more for my foot than pudendal pain. Tramadol actually works pretty well for pudendal. I take usuasly one or the other each night depending on which pain I have. For surgery I just cannot remember how long I took the narcotics on a more often basis (a couple weehks?). I expect with all you have had done it could be awhile and at least you are off the patch. Last year I did take the fentanyl patch but my acupuncturist found a way to get rid of the last constant pundendal pain so I was able to stop the patch and use pain meds on an as needed basis. FYI I have been on narcotics as needed for twenty years or more just due to the foot or actually pains in my large toes.
Janet

Hi Janet
Thank you for that info. I am taking Tramadol 200mg once a day and it does help the pudendal nerve pain. My pain management doc put me on this about 1 month ago. I actually stopped the Fentanyl cold turkey, I just couldn't handle the s/e any more.... I was having terrible insomnia every time I had to change my patch. I am just glad I am off it now. I was on it for over 2 years. I found the fentanyl wasn't as effective as well. Have you mostly been on the same meds for 20 yrs Janet? Or have you had to switch things up because your body has become immune as well?

Lara

Lara,
I have been using oxycodone APAP (aka Percocet) 5-325 mg for the 20 years for my toe pain. It has been as needed and only take a pill every few days so I never got immune. I also take amitriptlene for shooting nerve pain in toes and that probaly 15 years no change. The pn pain has only been the last 6 years and I did change around drugs and just ended up now with the tramadol 50mg as needed and usually the nights I do not take the oxy. I guess I at most had some more constant use after surgery and then again when I went to the new pain dr that tried the fentenyl for a few months but never was long enough to lose effectiveness. I do take extra pills now and then but not all day long. You were brave to go cold turkey. It took a month or two to get off the patch but I had no withdrawal issues and the pain dr worked with me. The patch did seem over medicating me but felt I should give it a try, luckily the acupuncturist came through and I was able to get the pain lower and off the constant meds. It realyy is trial and error. I also took neuroton and switched to lyrica when on the patch but got rid of that after I was off the patch. I hope the tramadal can see you through until you recover and the pain lowers as you heal.
Janet

Hi Lara and Janet,
It's my view that opiates/opioids can be very useful, even life saving, in the management of severe chronic pain. I myself took codeine phosphate, post decompression, for ten years. In the beginning it helped some, however as the pain worsened over time its effect, even at increased doses, became minimal and very likely principally placebo in nature. Morphine was not an option on account of disturbing hallucinations. I was, therefore, prescribed immediate release (IR) oxycodone liquid: which also caused hallucinations, although of a less severe nature. I resisted taking the IR oxycodone on account of those hallucinations, but the pain was so remorseless that I re-started the drug, beginning with a paediatric dose and titrating slowly up to 15mls a day, without hallucinations. The dose is small but it gives me a valuable few hours of low pain during the day, and it also allows room for increases.

Thank you Stephanie for sharing your personal history with narcotics..... I appreciate it. It gives me a greater perspective on the magnitude of PNE. Recovery is not easy and I will not beat my self up anymore just because I still need pain killers at 7 months post op. My pain management doc here in Canada calls me a surgical "failure" because I am still on narcotics. He is the only one who is "failing" here. Very sad. Thank you again for sharing your story.

Lara

Stephanie - thanks you (I) never know when you may need something else to try.
Lara - I can relate to the dr saying I might be disabled because I could not start back to work a month post op. Guess I may have failed as well. Of course he could not actually determine disability so he sent me to someone else. Getting disability is really hard but I found I could just work shorter days and leave without pay for those hours I left early using the family medical leave act. Basically we have to find our own way thanks to the others here for support. Keep the faith and you will get there in time.
Janer

I took narcotics for 9 months post-op. Probably could have used them a bit longer though. Laramarie, it seems to me your pain doc doesn't know much about PNE or PNE surgery.

Violet