Health Organization for Pudendal Education

Greeting.....I am still new to this site but the more I read the more I think I may have problems with my PFCN. My pain is mainly from sitting and is in the corner of my lower butt cheeck. No pain or problem with genitals, the perineum doesnt hurt but feels a little weird, and just a tiny amount of anal pain at the opening but no problem with bowel movement, sex, orgasm etc. I do have problem emptying bladder, had a terp procedure in 2014 which helped, but that preceded this butt pain.

So I am thinking I may have problems with my PFCN. Is it "better", for lack of a better word, to have this problem rather than PN. And is there anyway to treat this problem other than surgery.

I finally have an appointment with someone for this problem....got referred to a "neural- urologist" so hopefully he can diagnose me. I still have appointment with Dr Dellon April 2. I also found this study authored by him but would love to hear from any others treatment or surgery on their PFCN.

https://www.ncbi.nlm.nih.gov/pubmed/25917688

I think a PFCN issue is much better because it is a purely sensory nerve vs. the PN which is an autonomic motor and sensory nerve. I don’t know where you live, but Dr. Jan Fritz is an excellent interventional radiologist at Johns Hopkins in Baltimore does PFCN blocks (you need a prescription from your doctor and to get in contact with his scheduling department) and I think he also does cryo on the PFCN. Because it is a sensory nerve it is much safer than on the PN (which he does not to). PRF may also be an option.

Stephanies

Thanks for that explanation Stephanies. I will look into that cryo treatment option. So if I were to have surgery and have the nerves removed would that leave a big numb spot. Its already a little numb when you touch it and I use these 5% lidocaine patches almost everyday that seems to numb it further and help with the pain. I am seeing Dr Dellon so hopefully he can give me a diagnosis. I wonder if I have both the PN and the PFCN cause there is some anal pain.

Have totally changed how I pass the hours of the day. The good thing is I am almost 63 and on disability so don't have to worry about work. I cant imagine having to go to work with this pain and inability to sit. No way I could do it. My elbows are red and sore from standing so much and leaning on the standing desk. The recliner sits emtpy. I am going to need to travel for treatment and hope I get better so I can fly.

Hi frigator, I really hope it doesn’t turn out to be PN. However from experience, my symptoms got worse with time and wrong procedures (started with rectum too). The best thing you can do is the Potter MRI/MRN, it showed I have mild Pudendal nerve entrapment. Also if you are going to see a PN doctor, plz don’t follow blindly their treatment plans. Stephane is very educated about PN, so I would advise u to consider his suggestions. When it comes to PN, unfortunately you will need to be very careful in choosing your doctors. If you want the Potter protocol pm me.
Lelej

So has anyone here had a successful PFCN surgery. And what doctors do this surgery on men. I know Dellon does them but anyone else?

Hi This reply is to Stephanie ..I think you wrote to me to see how I'm doing ? Thanks!. Im still struggling with severe rectal pain, but have increased my activity levels at the advice of savvy PT' S whom I trust.. I have done many things, and then dealt with afte rpain, which does return to baseline. Rectal pain suppositories have helped most , and I have a pain pump (which was probably a mistake long story..But it may help a little if I press the Bolus _which sends more medicine into my spinal cord. I am also considering other therapies .
I hope you are doing better!...Feel free to email me at kmcgeed@optonline.net.

Also for anyone considering surgery on the PCFN area please be careful,do your research about doctors etc. I had a nerve resection with Dr. Dellon,, I was much worse pain-wise 3 months later, and felt severe anal pain,,, which I still have. Please be careful with surgery and with whom you choose to do it.

Good Luck to all!
KathyD

I keep trying to diagnose myself and it just seems more and more like my problem maybe be something other than pn. The only rectal pain I have is sensory, just around the anus and mild. The real pain is just in there deep in the inside corner of my butt. I cant put a finger on where it hurts....it feels like its in my butt cheek near the anus aggravated by sitting. I ask this before but got no answer. Who do you get to treat you if you dont have PN but have PFCN pain. Is the treatment the same for PN? And who does surgery on the PFCN besides Dr Dellon. Is there anybody? I am thinking the reason I got no answer is there is no one else?

Hi. I'm kind of new to all this, so I hope I don't give wrong info. Dr. Conway is the doctor I'm seeing currently, he diagnosed me with both PN and PFCN. I have an up coming appointment to discuss surgery in greater detail. I will be finding out more about surgery for PFCN. At my last appointment he lead me to believe that he would be releasing both sets of nerves. I can give you more info after the 18th as to what he says.

Thanks for the reply Spider. So perhaps Dr Conway does help with the PCFN nerve? Let us know.

I am so depressed...just spent many hours researching Dr Dellon on this forum and only found one person that he has helped with the surgery: Frankiet, who had surgery in 2015 and was cured. But the list of people who had surgery and did not get better is long: Kathyd, Ertz, KGH, MRN87, Jon, 3 foot surgeries, Lottanerve, non sequiter, Pelvis Stessly, Biker George, and more. Sorry if I left someone out. I stopped reading when I got to 2011 so there are probably more. And some who had the surgery just left the forum. Many got worse from the surgery which is my biggest fear.

So why am I even going to Dr Dellon

I guess I dont know anyone else to go to and would like to have at the very least a diagnosis which hopefully he can give me. Dellon did a good job with my leg surgery but this PN or PCFN is a whole another deal. Seems like most things make it worse and I cant stand any worsening.

If you aren't certain what to do, sometimes it's worth it to get a 2nd opinion. Can't remember if you said whether you have already tried PT. If not, you could check the PT list to see if there are any good ones in your area and try that route first. if you conclude surgery isn't right for you, there are other pain management options to try.

Violet