Health Organization for Pudendal Education

Hi all,

I went to a pain specialist at the major university hospital where I live yesterday. Of course, she knew nothing about PNE, so I brought her Dr. Hibner's most recent article from the Journal of Advanced Minimally Invasive Gynecology (2009). I also spouted off all kinds of everything about it.

She said that the minor doses (1.5 pills a day) of 5/325 Oxycodone/APAP that I've been taking is not for chronic pain, but for breakthrough pain flares and post-surgical pain. Since I am now 9 weeks post-op, she recommended that I continue on the Lyrica, Amitriptyline, and add Fentanyl patches (12.5 mcg/hour). She was a little leary that I was on the Valium (10mg a day total - divided), but I explained to her how much it helps me for my muscle spasms, which then contribute to the PN pain, etc, etc. She remarked "well you are addicted, you know." And I remarked right back that my PCP noted that I may very well be addicted, but I am addicted because I NEED TO BE ADDICTED to it right now. Key word = right now. He told me, "you aren't taking more than you need or eating it like candy or sleeping all day --- you need it because you are in PAIN." THANKS for validating me, my lovely PCP So, I'm staying on the Valium, Amitriptyline, Lyrica at 75 mg 2x/day (although, I do possibly want to look at increasing the dosage), and I need it now. In 3 months I hope I don't need it at ALL. The proof in the pudding is that my nerve was very damaged and I need this medication to survive. I cannot let the pain control my life anymore. It's already stolen too much from me and my family.

I start the Fentanyl patch tonight, so I will post and let everyone know how I feel initially.

I am still icing frequently throughout the day. Some days ARE better than others and I stand, walk, and do a lot more (no driving yet and sitting on most surfaces is impossible and I haven't found the right cushion--- actually, a completely hard surface is the best for me for it "raises me up" on my sit bones.)

Best,

AM

Hi AM,
Don'tcha just hate when you have to justify yourself to MD's? Are you comfortable with the particular PMD? Was the info you provided her about PN well received or did she seem to blow it off? I agree with you that you need whatever medication is helping you. Especially in light of the condition of your right side. I didn't realize you were taking Oxy. For some reason, I thought you were taking low dose percs. I'm interested to hear how you do with the fentanyl. I know you had some reservations about it but I'm really hoping it will be helpful to you. Do you have a follow-up with her in 3 months?
I'm so very happy that you're starting to have better days!!!! I'm intrigued about hard surfaces being more comfortable for you! What do you mean by "it raises you up on your sit bones"? Do you not have sit bone pain?
Love and hugs,
Karyn

Karyn wrote:Hi AM,
Don'tcha just hate when you have to justify yourself to MD's? Are you comfortable with the particular PMD? Was the info you provided her about PN well received or did she seem to blow it off? I agree with you that you need whatever medication is helping you. Especially in light of the condition of your right side. I didn't realize you were taking Oxy. For some reason, I thought you were taking low dose percs. I'm interested to hear how you do with the fentanyl. I know you had some reservations about it but I'm really hoping it will be helpful to you. Do you have a follow-up with her in 3 months?
I'm so very happy that you're starting to have better days!!!! I'm intrigued about hard surfaces being more comfortable for you! What do you mean by "it raises you up on your sit bones"? Do you not have sit bone pain?
Love and hugs,
Karyn

HI friend,

I do hate justifying myself to docs. It's the story of the PNE patients' life, however. I think I have to give my new PMD another try (2 weeks follow up) to accurately judge whether or not I liked here. Oxycodone/APAP is Percocet. That is just the generic name for it. You may be confusing it with Oxycontin, which is another drug. I put the Fentanyl patch on last night, and had a hard time waking up. I feel druggy. And I have a headache. Then again I was depressed and crying last night before bed, and sometimes when I go to bed like that, I have a hard time waking up anyways

I feel like the hard surfaces are more comfortable for me because my problem is purely entrapment/damage at the Alcock's canal. The Alcock's canal is not IN your sit bones (please don't think I'm insulting your intelligence in any way, or anyone else's on the board for that matter, just saying), but the fleshy part near it. The theory is because I have such a bony butt, the bones "raise me up" and raise that nerve part off the surface that I'm sitting on, thus creating less pull and stretch on the nerve. Since my nerve was trapped in scar tissue, it created such a horrible pull on the nerve.

I definitely cannot sit on my dining room chairs. I don't have any hard surfaces so, I may go out and and get a board to sit on literally!

With love,

AM

Aaaaah ... thanks for the clarification about the oxycodone! I didn't know it was the generic for perc.
No, I didn't feel like you were insulting my intelligence about the sit bone thing. I actually didn't think of it in relation to the alcocks canal at all. I was just wondering if you had it or not. Some of us seem to experience this extra added joy, while others don't.
How often you you have to change the patch? Does it have good sticky stuff on it, so you can shower with it on?
I hope you begin to feel better as the day goes on.
Love ya,
Karyn

oh, please keep up the report on the Fentanyl patch, such an important discussion to know how we are all doing with different pain management programs. thanks so much AM and Karyn. I'll be seeing a pain specialist in Feb. hoping for an empathetic encounter

Cora

How can someone who is in excruciating pain every day of their life be addicted to a pain med? That comment just does not make sense especially coming from a pain specialist! You need pain meds when you are in pain, and I'm sure as soon as the pain has subsided a bit, you would be more than happy to get off of the stuff.

I hope the fetanyl patch helps. Is she worried you'll become addicted to fentanyl too?

Best wishes with your appointment next month, Cora! Please do let us know how it goes.
Griff - A good deal of these pain management medications do come with some nasty side effects and are addictive. But I agree with you. I mean, what are we supposed to do when that's all they're offering us?!?!?! It really doesn't make sense to prescribe someone a med and then call them an addict for using it.

Hello all,

I tried the Fentanyl Patch back in 2006. They didn't work for me, but please don't let that discourage you. Each and every new pain medication I have tried over the past 7.5 years has not worked for me. Mainly due to side effects I just couldn't live with. I do believe I recall a problem with the patches peeling off, which the manufacture addressed by sending you "overlays" which were a thin, larger piece of adhesive you placed over the patch. I was also concerned about the warning “do not use a heating pad while using the patch”, due to the possibility of it raising you body’s temperature, thus causing the patch to release too much medication into your system. At that time I was always either on ice or heat.

A's Mommy wrote:I feel like the hard surfaces are more comfortable for me because my problem is purely entrapment/damage at the Alcock's canal. The Alcock's canal is not IN your sit bones (please don't think I'm insulting your intelligence in any way, or anyone else's on the board for that matter, just saying), but the fleshy part near it. The theory is because I have such a bony butt, the bones "raise me up" and raise that nerve part off the surface that I'm sitting on, thus creating less pull and stretch on the nerve. Since my nerve was trapped in scar tissue, it created such a horrible pull on the nerve.

I also have always found that sitting on a “hard flat” surface felt like “normal” instead of having PN issues that make sitting instantly burn areas touching the seat, sit bones feel like they are going to push thru my skin and just a strange “hard” feeling, like there is concrete in my (also bony) butt.

Unfortunately, I can’t sit for long on the hard flat surface because it feels like my sacrum is being shoved upwards and then it will start aching.

I have had no idea why this is and was glad to see your post and know I wasn’t the only one with this symptom. I still can’t picture the anatomy in that sitting position. It is interesting that you said that the Alcock's Canel comes into play by being “unpressured” due to being “up” on our sit bones. Interesting, I’ll be pondering that one. I’d love to hear if anyone else has this particular sitting situation.

Robyn

Good bye, Fentanyl patch.

I was like a drugged zombie for the 1.5 days I was on it. No change in my nerve pain. Just felt high. I pulled it off today and am calling PMD tomorrow to report.

AM

Oooooh! I'm so very sorry the patch wasn't helpful! Please let us know how it goes with the PMD!
Love ya,
Karyn