Health Organization for Pudendal Education

I joined this site today and found a lot of good information. Wish I had known about it years ago. My story - three years of increasing sitting rectal pain. Cannot sit at all right now. I am a serious athlete. I stay in great shape and workout 7 days per week. Luckily, pain is only sitting, not working out.

After competing in track for 20 years, I became a competitive barefoot waterskier. We ski on our rear ends (butt) for deep water starts, doing tumble turns, and land directly on our butts on the water flying off the ski jump at 45 mph. I would say I have thousands of instances of pelvic trauma over the last twenty years. (keep in mind we wear special barefoot suits to protect our pelvis)....

My pain has increased continuously for three years. I retired from the sport 2010 not knowing the problem at all after eleven National Championships. I have seen orthopedists, proctologists, urologists, pain management specialist - all with no answers. Had a MRI, CT, ultrasound, colonoscopy, cystoscopy, five nerve pain medications, two years of pelvic Physical Therapy and five nerve block injections. No help, no answers.

Finally - Dr. Irwin Goldstein in Sand Diego figured out it was PNE. He doesn't do surgery and referred me to Dr. Hibner.

I am seeing him next week in Phoenix. It appears he really knows and understands PNE. I cannot wait to have surgery and get well. I want my life back. I want to go to movies, restaurants, take long plane rides again.

Would love to hear feedback from others that know him and his work....

Welcome Patrick,
Glad you have found HOPE too
If you go to the home pages (in red above) there is a host of good information on PN and PNE including some by Dr Hibner himself.

http://www.pudendalhope.info/sites/defa ... Hibner.pdf

http://www.nxtbook.com/nxtbooks/elsevie ... dex.php#/8

http://www.surgeryu.com/play-video.php?id=1179 Don't watch this if seeing the decompression surgery will make you worry.

I did listen to him on a Blog talk radio show too some time ago and he sounded like such a nice guy but one who really knows his stuff (where so many haven't got a clue, as you know too well) His take on a diagnosis of PN as opposed to PNE was mainly down to a patients history. IF the problem had some traumatic onset, surgery, or a fall onto coccyx for instance then surgery was more than likely necessary. This is after all other treatments had been exhausted of course, no one is advocting surgery without trying other therapies available. It seems that you are at that stage now??
I presume that the nerve blocks were for the pudendal nerve (although perhaps not all they wanted to do for me was spinal nerve root blocks at S1/L5)
At least you are on the right track now, just a shame it takes so long to wade through the nonsense the medical profession offer us (if they offer anything of course) to get the right answers.
Take care,
Helen

Hello,

I do not know your whole history, of course. But if you did not check for Sacro Illiack Joint dsysfunction (CT scan concentrating on your SI joints would do the job), or general pelvis misalignment (PT that is good at this or physiatrist that is good in this) I would check it first. If you have it even if you decided to do operation it is important to address it first. Your nerve can be stretched because of your pelvis position. Of course I cannot advise you how to find UK specialists in this area. But probably fellow UK sufferers would do it.

Good luck with your treatment,

Helen

Hi Patrick,

Ahhhh yes, I love waterskiing!! And working out. I never had pain while working out but it's what caused my PNE due to chronic ligament strain.

If you search RJR's posts you might find some info on Dr. Hibner. I remember his most previous post he said he is doing quite well. nyt has seen him too. You may also want to read konedog's most recent posts on treatment with ESWT from Dr. Kirk Andrew.

I don't know what type of pelvic floor PT you had -- there are different types. When you go to Phoenix, try to get an appointment in the same trip to see Loretta, the PT who works with Dr. Hibner. (She's listed on our PT page) Surgery is not necessarily a cure-all and is not without risks so do your homework and rule out all possible causes including labral tears (hip) before heading into surgery.

What type of nerve blocks did you have? Did you have any temporary (even a few hours) of relief?

Violet

Welcome to HOPE, Patrick. Since I have been diagnosed with bilateral inguinal hernias after 6 years of pain, I would urge you to consider that reason as well. See my post:
http://www.pudendalhope.info/forum/view ... =10#p35421

Don-

After reading your story, I decided I am going to arrange a consult with Dr Shernin Towfigh. She is a hernia specialist who I read about and she is right in my area at Cedars Siani here is Los Angeles.

Please keep us posted on your surgical consult!

Merrie

I met with Dr. Castellanos (who is under Dr. Hibner in Phoenix). I have now had two pelvic MRIs with contrast, CT scan, Prostate Ultrasound, Colonscopy, Cystoscopy, hernia exams, one year of Physical Therapy from a pelvic specialist, rectal exams, and everything else on planet earth related to pelvic pain. I've had five injections in the pudendal nerve and inferior rectal nerve. They all worked for a few days, but the pain always returned. I've tried Lyrica, Neurontin, Cymbalta, Tramadol, and others. Pain meds are a waste of time and money.

I have confirmed PNE and I'm not the first serious barefoot waterskier he has seen with it. We land on our pelvis when we come off the jump at 45 mph, in addition to using our pelvis for deep water starts, tumble turns, etc. I've smashed my pelvis countless times on the water at high speed (although always wearing the best barefoot protection gear) So, 25 years has caused scaring of the nerve and ligament. He is fixing it in two weeks. I'm praying to someday be able to sit again and be pain free.

I consider Dr. Castellanos a genus and he knows PNE inside and out. He went to one of the best Medical Schools in the world. He and Dr. Hibner have to be the best in the world at this condition. He completely understood all signs and symptoms. Their methods have amazing success. It up to nature now to see if my PNE is curable. I appreciate everyone's feedback. I'll return after my upcoming surgery.

Good luck Patrick. Have always been mightily impressed by Dr Hibner too, although I haven't met him, I am so grateful that he has taken up the PN/PNE challenge and continues to develop his surgical techniques ensuring that his patients do get the best treatment that he can offer.
I wish you a speedy recovery and hope the procedure goes well.
Take care,
Helen

Wishing you all the best, Patrick. If you keep in mind going in that recovery takes months (not weeks), you will be able to cope better post-op with a slow "take it easy" approach. I agree you are in good hands with Dr. Hibner and team.

Best,

Violet

Would love a postoperative update from Patrick!