Health Organization for Pudendal Education

Hi Violet,
Thanks for the encouragement. Yes I am praying that Tracy can help me and if she didn't think so I guess she wouldn't have told me to come. She is going to evaluate me and do 2 more treatments. It's a 3 day thing. I am going to try to relax while I am there and go to the beach too. She is supposed to be very thorough. She will have an opinion at the end of it and then I will have an idea as to if I will be stuck with this. She will be the first person that I have talked to who actually knows about this issue. The good news that I have is that my hip is continuing to improve faster now. My si joint pain has improved a lot from where it was before surgery. This leads me to think that it should all go away with more rehab and time that is the si pain I am talking about. On the other hand my nerve issues with sitting pain and penis issues are not going away. This continues to consume me every day and I will not get my life back if I can't get rid of those symptoms even if my hip gets to 100 percent. As long as I have those symptoms I can't get rid of the psychological and mental sickness I have developed. This is because of the pain and the fact that I am prevented from doing the things that make me happy in life. I desperately need these things for my survival. I can't handle the isolation that this puts you in. It is a direct result of this everyone who has it knows that. I get out some to go eat or do something boring. I sometimes will go meet a friend for a short visit however I am not driving yet. It's not that often I can do that though or even call someone back because of the mental trauma I have experienced. I desperately want to get rid of this and get out and live but for now my mind is ruined. I am scared of what will happen to me. . . I don't mean to go on and on but I know you understand this from what you have been through and I find it comforting to talk to someone who understands this because nobody else does. I have no freakin idea how you survived those 2 yrs of bed rest with isolation that you described. I may have asked you this before I don't remember but if I have some compressed nerves in the paraneium area that got that way from the fall do you think that they can rebound on there own after this much time? Or would if require a decompression surgery to try to accomplish ?
Frank

Hi Frank,

Yes, I understand how isolating PN can be. It's hard to maintain friendships and relationships when you can't sit. I guess what kept me sane was being able to come on the forum and talk to other people and realize I wasn't alone. I had a computer set-up that allowed me to go online while lying down. Some of my closest friends are people I met on this forum.

Hopefully you will be able to resolve your pain and pelvic issues with PT and conservative therapies. If you have pelvic instability, misalignment, and strained ligaments that won't heal, you might also want to consider prolotherapy to strengthen the ligaments. But hopefully Tracy will be able to steer you in the right direction.

Violet

I'm 3 years in from starting my journey with this PN pain.
I didn't really start to improve until last summer when my pelvic pt mixed internal work
with strengthening my glutes and hamstrings. I had SI pain for a few years before and they diagnosed a ligament strain.
So I think you may improve with some pelvic pt plus the regular pt. I've improved in terms of the perineum pain, which was the Obturator internus impacting the nerve. working on that meant i could walk longer without flaring. Being able to sit meant my piriformis stopped clamping down on the nerve too. I totally understand the mental aspect. especially when it impacts such sensitive areas. the deep breathing didnt relax my pelvic floor much but did help me mentally by calming the system. So I breathe deep, distract as much as I can, get enough sleep and when possible try doing the stuff that makes me feel like myself

Tracy Sher is amazing! I'll post about it soon.. I was misdiagnosed with pudendal neuralgia and I finally got my proper diagnosis last week: https://www.sports-health.com/sports-in ... ndinopathy
It's been a long road of misery the last 6 years and I'm floored no one found it sooner. The first appointment will be 2 hours so she has the time to find the problems. Very worth every single penny the flights and appointments. I finally have a fix. I'll do PT for 12 weeks and if that doesn't work.. surgery. I feel like I have my life back. If anyone wants to message or call me.. feel free. I've been completely emotional the last few days because I went from thinking there is no fix... to getting a plan of recovery.
~Julie

Hi Julie,

Glad to hear you have found a fix but I'm a little confused. You say your first appointment will be 2 hours long and you haven't had it yet, so how did you get a diagnosis? I will be interested to hear how things go for you.

It sounds like the location of pain for high proximal hamstring tendinopathy is somewhat different than for pudendal neuralgia. They both may cause pain with sitting but in different areas.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4396672/




Violet

Hello fellow pudendal sufferers,
I have been meaning to post an update on here for a while but kept waiting and hoping I would have something good to add. I went through all my rehab for my hip surgery for the torn labrum, cam impemgement, and microfracture. This Jan will be 2 yrs after that surgery. Well it helped my hip a good bit and was definitely needed cause I had multiple injuries. Unfortunately it didn’t fix what has disabled me and taken my whole life away. Which is whatever got torn in the middle where my crease goes up into the paraneium. So It’s like sitting on torn tissue and also with pudendal pain. I was limited in my hip rehab cause of the pudendal holding me back. Obviously everyone on here know how it restricts movement. I also went to Tracy Sher in Florida twice. I think she is a great person and really knows about the pudendal. She also was the only person who would actually examine me there hands on. She did some manual therapy to try to stimulate blood flow and break up scar tissue. I did all kinds of pelvic floor stuff etc. She did help me some and has also been good talking to her because she understands and nobody else does. I still continue to suffer with the same problem and same pain though. I have now went to Dr. Meyers in phillidelphia. He is anexcellent surgeon who does core muscle surgeries. Most people don’t know about it or haven’t heard of this type of surgery. Even though he has done so many thousand of them it isn’t covered by insurance and is still considered experimental. He operates on a lot of professional sports player but with also see the average joe too and seems to care and take a descent amount of time to listen and see if he can help you.so I had this core muscle surgery last Tuesday. I am out 1 week now. Going back home tomorrow and have been here in this hotel and going to there pt every day since. He did a pelvic floor repair, did some work on my adductors,rectus abdominus etc. then dr. Coleman went through my hip to get to my psoas and lengthened it and trimmed it and tacked it back down. He also put 2 more anchors in my hip labrum he said to make it more stable . He said my hip looked good though. He just had to go through that way to get to my psoas which he says he thinks will fix my pudendal. It was very detailed muscles repaired and decompressing . Lots of detail in all the surgical notes. Anyway this is my last chance to try to fix this bullshit that has taken my life and left me alone. They feel confident that this will help my problems cause I have a lot going on. As far as my pudendal where it’s torn in ther I just can’t see it but I would like to believe it . If I make it through this rehab I will find out. This won’t be like my hip rehab which was a nightmare wii5 the pudendal. I will be on crutches another 2 weeks and I should have an idea of what this will be like in like 3 months but would definitely know by 6 months. Right now I am psychologically destroyed like I have been for the last 3 years. I will keep writing more to this tomorrow cause it’s not done yet.

Hi Frank,

Wow, that sounds like major repairs you had done. I sure hope this will be the answer for you to get well.

Violet