Health Organization for Pudendal Education

Hi there. Its somewhat unfortunate and discouraging at the same time, to read other people's success stories only to find out a couple of months later that they're in pain again. Has there been any 100% success stories? I'm heading to the US in January for consultation, testing, and do the blocks. I'm really trying to get my hopes high. I really dream of being able to ride my motorcycle again, or just sit, in the movies, to read a book, just beign able to focus at work, jog like I used to....
There's gotta be something else that the Doctors are missing. I mean why are most people able to sit, even for hours. Sitting for long periods can't be the reason. My brother in law is an avid ironman participant, he trains (cycles) every single day. I asked him if he ever had any related problems, he told me no...he does not use a special seat either.

On another note, and this is embarrassing, but of all of you with rectal symptoms particularly the "golf ball" feeling, do you get such feeling after doing the 2 in the bathroom and clean yourself up? Yup I know, its embarrassing to write about, but I do. Using wipes somewhat alleviates the problem. I also get soreness and stabbing pain down where the buttchecks meet the leg and towards the outside. I went to see a Doctor not long ago, when I asked a pain specialist about doing a block on the pudendal nerve, he sent me to him. Without doing any sort of exploration, this Doctor told me I probably had an anal fissure and started talking about a sphincterotomy. I told him I do not have significant pain while doing the 2, nor I've had any sort of bleeding. I told him I do have all my butt in a general state of spasm, and was surpised an anal fissure could cause all that, but he insisted. When I told him about the possibility of PNE, he just looked at me like I was crazy, reading to much on the internet, etc...

My Dr that administered my colonoscipy knew nothing about pn. You will find more Dr, s on your journey with pn that have never heard of this.
I have had 3 decompression surgeries with no improvement what so ever. I would love to hear of somone that has had good results with a pain pump.
I too would love to go out to dinner, sit to watch a musical etc , instead of lying in the back seat of the car only to observe the tops of trees and telephone poles. I have learned to adjust my days by painting abstracts, lately the paintings are all just disgusting, I am ready to eliminate that from my life.
Sorry I did not have better news for you. This thing is a real you know what.

There are success stories out there. We generally don't hear about them on the forum because they move on with their lives.

Why some individuals develop PN and others do not when the same activity is done is one of those questions that no one has an answer to. Somewhere I heard or read the suggestion that anatomical variation might put some individuals at higher risk than others. What the exact variation(s) are, I don't know. HerMajesty might be able to shed some light on the idea.

Don't get discouraged. I know easier said than done. The doctors who treat PN/PNE are very passionate about getting their patients well. We couldn't ask for a better group of doctors that have taken this neuropathic pain disorder on.

Good luck with your consult and keep us posted.

some of the ladies who got misdiagnosed with vulvodynia got cured by taking Lyrica for a long period of time (2/3 years).
There is one on another forum I visit which suffered from crippling vaginal burning which surely can only be the pudendal nerve acting up! she is now cured, however she started the medication VERY soon after the onset of symptoms (3 months)! I started Amitriptyline after 1 and 1/2 months of vulvar nerve pain, and I am now 90% pain free on 50 mg as long as I don't overdo it. I still get paresthesia in the form of buzzing and electrical feelings, so I need some Lyrica soon....I am also still sexually dysfunctional but hey, I can go to university!
there is another user, jo1, here which got cured after 4 nerve blocks.

recovery depends on a lot of factors. your age, your anatomy, your doctors, your reaction to medication and procedures, how early on you tackle the problem, your luck...

I am not sure whether this disease had any major part. ( but tarlov cyst and connective tissue disorders seem to go together, so the connection may still be there)


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I too had that bowling ball weight in the rectum as well...horrible period. I also have piriformis syndrome (it's calmer now),and spasms everywhere, from my ham strings, glutes, IT band, ACL, SI joint and up into my back, but thankfully, I found treatment that has help me tremendously this past year (and I have had this 4 yrs as of Feb 14). I have had the normal PT, which made everything worse, accupunture, massages, back/buttock nerve blocks, trigger point injections (because my legs had mutiple knots that spasmed because of inactivity), Botox injections and finally pudendal nerve blocks, which was amazing for the bowling ball feeling. Like most I have so many MRI's, EMG's, CT scan, Arthoscope, and all showed nothing. My thoughts were in the dirt and I got to a point where I was bed ridden and didn't want to go on...because of the drs that thought I was a head case.

You are not a head case...

Last year, my neurologist (who also suffers from PN) wanted me to see a Physical Therapist that did pelvic floor therapy...I was like "your crazy!" Like most women, we dread that annual visit to the gyn, and now this guy wants me to go weekly. Needless to say when you have pain, numbness, pressure and a pain in your rectum that randomly stops you in your tracks....you will do whatever it takes. I went, and I have been going once a week since last February. It has provided me so much relief. She also works on men too and has had some significant results. Apparently, the fascia tissue (overtime) gets tight, puts pressure/constricts nerves and muscles and makes the pelvic/hips/piriformis difficult to move; and the pelvic floor has spasms. Also, the neurologist suggest I find a dr. who did osteopathic muscle therapy who could work on my external legs, buttocks and back and I did in conjunction with the pelvic pt. In addition, I needed to get moving (for the physical and emotional aspects of life) and really work at getting some piece of my life back so, I began taking a yoga class at the office of the pelvic therapist. I have not had a PN block since October 2012.

I too am looking for that 100% recovery, but I also (now) know that I must be my own advocate and that the doctors today are a "business" and not for research or hand holding. For me, I'm getting better...sitting is still an issue but not "as" painful (you know what I mean). I hope that you find encouragement in all of this....if anything, keep moving.