Health Organization for Pudendal Education

Hi Karyn and Celeste,

I believe it is just a misunderstanding on the part of the patients. It is often hard for me to remember all I have been told in a doctor visit, especially statistics. It would be good if some of Dr Hibner's patients who are currently on the forum could clear this up.

Jeanie

Hi everyone on this thread,
I feel like I am joining in on a game of ping pong! LOL

I recently had surgery by Dr. Hibner and was writing what he told me from memory ...
And THEN I remembered --- I HAVE IT IN WRITING from my pre-op paperwork I signed, called: CONSENT FOR PUDENDAL NEUROLYSIS. Here it is, the exact wording excerpted from my paperwork:

"The outcomes of the surgery were explained to me as followed:
- 1/3 (33%) of patients are pain-free 12 months from surgery
- 1/3 (33%) of patients have some improvement from pain
- 1/3 (33%) of patients do not have improvement from pain
- 1 % of patients may get worse"

This is for Hibner patients only. Other surgeons may have similar numbers, which would naturally result in confusion as we all compare notes.
I hope this helps!

Peace out,
Sharon

HM, I completely understand why you are OUT. And frankly, I think it is our loss that you are.

We are all looking at this elephant from different viewpoints and each seeing something different. If I see a tail and you see a foot and we each describe the elephant differently that doesn't mean I'm right and you are wrong.

I am just very grateful for the physical therapist who discovered I had PNE because without her, I could still be lying on my couch with no life.

Violet M wrote:

I am just very grateful for the physical therapist who discovered I had PNE because without her, I could still be lying on my couch with no life.

Violet , I agree that it's fantastic that your Physical therapist diagnosed you with PNE and I understand why you are grateful to them. I would be as well.

What disapointed me was that I saw a physical therapist who told me that I did not have PNE and therefore I perservered with PT for too long. I have since found out I do have entrapments. PT's can help people but I also wish more PT's recognized the limitations of their treatment. I wish I had seen a PT like yours. PT will not cure an entrapped pudendal nerve.

I would also agree with you in valuing Hermajestys contributions. I am sure there is science behind the Hesch method for instance but sooner or later people are always going to turn round and say ' can you prove it works? I would stress that I don't know about the Hesch method as I have never experienced this type of PT.

Violet M wrote:
We are all looking at this elephant from different viewpoints and each seeing something different. If I see a tail and you see a foot and we each describe the elephant differently that doesn't mean I'm right and you are wrong.

I am going to politely disagree with you here Violet. Science should be based on evidence not perception. (I presume your referring to PT with this comment not Hibner's results.)

The fact remains that myofascial PT ( which is the most common type of PT patients try for pelvic pain) is an unproven treatment for pelvic pain.

Thank you for the clarification, LottaNerve!
Warm and best regards,
Karyn

Charlie wrote:

Violet M wrote:
We are all looking at this elephant from different viewpoints and each seeing something different. If I see a tail and you see a foot and we each describe the elephant differently that doesn't mean I'm right and you are wrong.

I am going to politely disagree with you here Violet. Science should be based on evidence not perception. (I presume your referring to PT with this comment not Hibner's results.)

The fact remains that myofascial PT ( which is the most common type of PT patients try for pelvic pain) is an unproven treatment for pelvic pain.

Actually, I agree with you Charlie that science should be based on evidence not perception. But any peer-reviewed literature publishing results of a particular treatment option for pudendal neuralgia -- whether PT or surgery -- is going to have to be based on the patients' perception of what their post-treatment pain levels are. I'm not sure how you can get away from perception in evaluating the results of PN treatments.

I completely understand your feelings about PT when you were told something that turned out not to be true. And I appreciate the fact that you are telling others of your experience so maybe they can avoid the same pitfalls. I have been saying for years that if PT doesn't help you at all after several sessions, it probably isn't going to help.

What I meant about looking at this from different points of view is that there are many different causes of PN pain and different treatment options work for different people. So if a treatment helps someone and they post about it helping them, that is their viewpoint based on their experience. It is their experience -- you can't argue with it. If they say, based on their experience that what they are looking at is the elephant's foot -- you can't tell them they are wrong just because you are looking at the elephant's tail.

Violet M wrote:I am just very grateful for the physical therapist who discovered I had PNE because without her, I could still be lying on my couch with no life.

I think that with your tenacity, you would have kept on looking. JMHO.

Celeste wrote:I think that with your tenacity, you would have kept on looking. JMHO.

True, Celeste. I'm sure the same was true for you and thankfully for many of our members who post so much valuable information to help everyone else out.