Bill, I'm glad fentanyl works for you. I tried to avoid opiates as much as I could, partly because I had trouble getting docs to prescribe them so I tried to tough it out as much as I could. They definitely helped though.
Violet
My Best Trick for Pain Relief
Re: My Best Trick for Pain Relief
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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make-it-stop
- Posts: 68
- Joined: Tue May 10, 2011 6:53 am
- Location: Chicago, IL
Re: My Best Trick for Pain Relief
My trick is along the same lines as Bill, only mine is methadone instead of fentanyl. I haven't tried fentanyl yet, and I wonder how it would compare to methadone for helping reduce sharp and burning nerve pain. But the methadone is amazing in that it seems to target only my pelvis and reduce the burning and take the edge off the sharp knife-like feeling where the pudendal nerve is. For me, at least. I just take one teeny little tablet, and it reduces the pain by about 50%. If I know I will have to sit for a long while (like on a flight or something), I will take both my morning pill and afternoon pill together, and then it gets me through the long sit. Not too many side effects that I've noticed, as long as you take a small enough dose. Wish I could take away that other 50% of pain (or at least some more of it) so that I could be productive. Which brings me to...
If anyone knows of a really good way to numb the pudendal nerve and/or vagina, please let me know. Like if it's lidocaine, what percentage is it and what brand and pharmacy do you get it at? So far, the only type of lidocaine that I've felt do anything at all is Recticare, which is nice for the rectum, but burns in the vagina and doesn't do anything when applied externally.
If anyone knows of a really good way to numb the pudendal nerve and/or vagina, please let me know. Like if it's lidocaine, what percentage is it and what brand and pharmacy do you get it at? So far, the only type of lidocaine that I've felt do anything at all is Recticare, which is nice for the rectum, but burns in the vagina and doesn't do anything when applied externally.
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
Re: My Best Trick for Pain Relief
Make-it-stop, have you tried 20% benzocaine? It is found in extra-strength vagisil.
Violet
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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make-it-stop
- Posts: 68
- Joined: Tue May 10, 2011 6:53 am
- Location: Chicago, IL
Re: My Best Trick for Pain Relief
I can't remember if I tried the maximum strength or regular strength. I'll have to try it again in max. strength just to make sure. Thanks. A pharmacist recommended ketamine in a compounded cream, so I'm considering that, too.
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
Re: My Best Trick for Pain Relief
Just posting here to make this thread more current so I can find it easier when I suggest this therapy to people.
Violet
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: My Best Trick for Pain Relief
I was just looking on Amazon and Walmart for someone else, to find cheaper crates than the one I linked to above. Just suggesting that you might be able to get them for cheaper if you shop around.
Violet
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: My Best Trick for Pain Relief
Where do you get the patch? My pain dr refuses to give me the patch.
Re: My Best Trick for Pain Relief
Are you referring to the fentanyl patch? I think it would be very difficult to get it now. I recently took a training on substance abuse and we were told that fentanyl is the leading cause of drug overdose deaths.
https://www.nytimes.com/2017/11/03/heal ... e-cdc.html
I think doctors are just really scared to prescribe it right now.
Have you considered methadone or buprenorphine?
Violet
https://www.nytimes.com/2017/11/03/heal ... e-cdc.html
I think doctors are just really scared to prescribe it right now.
Have you considered methadone or buprenorphine?
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: My Best Trick for Pain Relief
My ex pain dr refuses to give me anything but tramadol and says the government will soon make them stop prescribing that
What are we going to do?
What are we going to do?
Re: My Best Trick for Pain Relief
Not sure....I guess we need to become politically active?
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.