Health Organization for Pudendal Education

I have been on and off this site for close to a year since my symptoms started. Since then I have seen numerous doctors with no diagnosis, my neuro gave me neurotonin which seemed to help for a while but now has limited results. I have managed to get pro bono PT work due to my economic situation at a top pelvic rehab center in San Francisco. My pt doesn't start until jan. I was wondering how much can a good pelvic pt help rid these symptoms? Mine lately have been deep soreness in buttocks and thigh/testicle area accompanied with burning feeling on skin and allydonia or hypersensitive skin in pelvic region all increased by sitting and as of late sometimes lying down. I also wake in morning with bladder pains which doesn't go away until I empty.
My family maybe moving out of the area soon though to region without specialists in pelvic pain, I am thinking of staying here for treatment but was wondering others results with his, did it relieve symptoms? By how much? And how long did it take to accomplish?

Welcome Matt,
PT help depends on what is wrong. Muscle issues (tightness, pelvic floor spasms, etc) are things PT can resolve however an entrapment of the Pudendal nerve usually isn't. I think a general guide is to see how it goes for 6 or so sessions so long as you are seeing a PN aware PT. Also they should be able to tell you what they think is wrong and can help you with. Unfortunately I am not sure how to evaluate your symptoms to say what might be the cause although others on the forum have more knowledge and may be able to provide a clue. You may want to check the homepage FAQs for info and symptoms also the PT list of thoe who are PN aware to see if you are with the right folks or did they say were?
Janet

Hi Janet

Thanks for your reply. Yes the pt I am seeing is one from Stephanie Prendergrast and Elizabeth Rummer's office who I found are some of the best in the business. So I think I am in good hands, I was wondering the capabilities of a PT in treating this, which you have given a good answer to. I am planning on going to UCSF urology pelvic pain center as well, trying to hit this thing head on, as so far it has cost me my job, health and possibly my marriage. It's been close to a year and this condition has been a real pain in the butt! Literally.

Matt,
Oh yes you are definitely in good hands, sorry it wasn't sooner. I hope your marriage can withstand until you are getting better. This is such a tough condition to figure out, treat and have others understand. We truly are the ones who can literally say we have a pain in the butt/ass since mine felt mostly anal/rectal even starting with the pelvic floor muscle spasms. Not being able to sit is not something normal or realized as a condition. I wish you the best and let us know how PT works or not and if the clinic comes up with some ideas and help.

Matt, I've known people who improved enough to where they did not feel surgery was necessary. It's definitely worth it to go for an evaluation and if the PT thinks they can help you then you can try several sessions to see if it helps.

PT didn't work for me and in the end I opted for surgery. I know it's a tough decision to make and I wish you the best. Sorry this has ruined your life so badly.

Violet

Matt, you're taking a step in the right direction. These PT's are very knowledgeable in Pudendal nerve issues. Stick with it for a while and see if things improve. Many people do get better with the correct physiotherapy.
We all understand your predicament when it comes to a 'normal life' job, family, relationship etc. It's extremely difficult to hold it all together in times of such horrendous pain. Remember, you need to look after yourself so that you may in the future look after your family. It's not easy but hang in there. Many of us have been where you are now. Hopefully you'll find the answers you need and in a few years time you'll look back and see just how far you've come.

Stay positive, you have very good PT's there.

Hi Matt,

You are definitely in great hands with Stephanie. She should be able to let you know what she thinks about your situation and start doing some exercises to help with some of the PN symptoms. If your nerve is truly entrapped, as others have written, PT might not help. If it is not entrapped, PT should help.

I am sorry to hear about your situation with your marriage. Sometimes others that live with us PN'ers get just as frustrated as we do. Unfortunately, I did get a divorce, but I found that when I took my husband with me to my appointments, he had a better understanding of what I was going through and that seemed to help our relationship, at that time. Would your wife be willing to go with you to Stephanie's appointments?

Take care,
Wendy

Physical therapy, does it work? It didn't work for me.I have had rectal spasms(aka Levator Spasms)for 20 years and I haven't found anything that would work. Since nothing has worked, it must be PNE. From what I have read on this forum and another forums ,PNE surgery has not helped either. Some people got a little better and some got worse.If I do have PNE, I might just have to live with it. Living with this problem will not be easy, but It will be better than having PNE surgery and getting worse. I think doctors still don't know enough about this problem. PNE surgery is like a coin toss, heads I get better, and tails I get worse(pun intended)

If its the proper kind of physical therapy, and if you stick to it and don't expect to be instantly cured than yes, it will likely work. No one here should expect an instant cure, there is no instant cure, there is only a treatment that will eventually leave you cured and pain free. Everyone seems to think surgery is the only way but the odds of a successful surgery are staggeringly low. The cause of most of our conditions is an unconscious habit of tensing our pelvic floor. Think of it like this, the time you've spent in pain, cut that in half and they'll like be how long your have to go through treatment for. I was in pain for 5 years, and I learned the actual way to treat my condition a year ago this month and in the year I have felt better than I have felt in the past 6 years. Stop tensing the pelvic floor and get proactive, that's the only way to get better. Good Luck All.

Bobby wrote:If its the proper kind of physical therapy, and if you stick to it and don't expect to be instantly cured than yes, it will likely work...

I disagree. I had more than 100 sessions of PT including many sessions with Tim Sawyer, the Stanford Protocol PT. It never cured me. Yes, I was better for a few hours afterward but that's it. I am not an exception and many forum members here have reported the same.
Refer to David Wise's latest study and you will see that the results are not very conclusive (especially if you take in consideration the fact that close to half the people in the study were rejected for unknown reasons).