Health Organization for Pudendal Education

I was diagnosed by 5 doctors with PNE and I had 2 failed PNE surgeries. My first surgery was in 2010 and the second one in 2011.
I did surgery because I was desperate. I had suffered since 2002. 100 sessions of PT did nothing. Botox sent me to the ER. The only thing left was surgery. I really wanted to believe in that MRN. Both the 3T MRI and MRN came back positive for PNE which was what convinced me to go for PNE surgery. In reality, I was simply grasping at straws.

Now that I have recovered 100% due to my mindbody practice, I can look back a bit more serenely at surgery to cure chronic pelvic pain.

I think we are far from the 60-100% success rate advertised by the PNE surgeons themselves.

Here is what I found:

1) I recently compiled my emails dating back to 2004 from PNE patients that had decompression surgery (patients from Tipna, Pudendal, Pudendalhope, and from the Headache in the Pelvis retreat). Among all those connections, I selected only people with whom I kept in touch for more than 2 months. With most of these people, I was communicating both before and after their surgeries.

Overall it is a group of 22 patients that had PNE surgery. My statistics show that only 13.5% of them benefited from surgery.

- 4 Nantes, 3 Aix, 5 Houston, 4 Baltimore, 4 Santa Monica, 1 Vienna, 4 Phoenix -yes, more than 22, I am counting re-dos.
- 14 F / 8 M

It is not scientific of course but those are real numbers (if you believe I am being truthful).


2) I analyzed the success stories on PudendalHope. There are 64 threads in the “SUCCESS STORIES” section. Only 19 of those 64 threads are success stories that have been posted by patients that claimed surgery made them much better or cured them.

It is a select group of people that were very excited about their surgery success and wanted to share the good news with the rest of us. You would expect these people for the most part to remain pain free or close to pain free.

I did a careful analysis of the subsequent posts from that select group of patients. Unfortunately, only 31.5% of them remained much better or cured. 68.5% of them relapsed or drifted back to a non-satisfactory level of pain.

So if among a select group of people that reported a successful surgery outcome, only 31.5% remain pain free or close to pain free, the real surgery success rate for all classes of patients must be between 0% and 31.5%. Is my 13.5% success rate so unbelievable then?

If my 13.5% is not too far from reality, think twice before going down the surgery route.
I know the sample is small and this is not scientific but where are the 60-100% of patients cured or significantly better?

I am not implying that PNE does not exist. All I am saying is that PNE is way way over-diagnosed and the access to surgery is offered in a shockingly casual manner.
A long car ride, sexual activity, or a fall does not start PNE. It is just so improbable. We go through sports in high school and college without a problem. Suddenly an incident triggers years of suffering like we never had before. Really...?

If you want PNE decompression surgery, you will get it. To see people get thrown on the conveyor belt to surgery by “PN aware” doctors is pretty disturbing when you realize the miserly success rate of such invasive procedure.

I concur with Ezer. My experience and the experiences of PNE friends I made on this board demonstrate the failure of surgery. I have said before that I know at least 5 women who had failed surgeries. Upon further review, I can count more than that -- at least 7 women and 3 men who have had failed surgeries. That's 10 people I know personally, who I have emailed with and talked with on the phone!

Even with the wonderful success of my pain pump in restoring me to a functioning life -- see my blog at http://www.icandpne.wordpress.com -- I have pain every day. As I sit on my cushion to write this, I am feeling pain in my left leg and buttock where Dr. Hibner cut my sacrotuberous ligament to access my pudendal nerve (then replaced it with a tendon from a cadaver). I also had surgery with Dr. Dellon, and I was so hopeful and excited by his attentiveness and responsiveness (especially with emails) that I ignored the inconsistencies of his claims (and inappropriateness of some of his jokes).

I have friends who have been injured worse than I by these surgeries, and if they still read this forum I hope they post their experiences here. They posted at first when they thought their surgeries were successful, but not since they descended back into pain. It is scary to talk about this stuff. Plus it is so hard to admit even to yourself that your surgery - which costs 10s of thousands of dollars, not to mention the huge emotional and physical investment - did more damage than good. Especially when it seems like everyone else is cheerleading for it -- especially your fellow post-surgery patients who are waiting for that magical one-year mark.

I sincerely wish everyone who has had surgery a happy recovery, but also hope that more recognition is given to those of us who were/are not so fortunate. Which seems to be most of us. If more of us talked about it, perhaps the surgeons could not continue to report false success claims.

Ezer,

Thank you for that information. It's very helpful for us who are new to PN to know that surgery isn't what it's cracked up to be. It gives people false hope and to go through something like that and still be suffering isn't fair or right.
Thanks for the post.
Dakotagirl

A pudendal facebook group with some 1200 members has some that have done well. But out of that many you would expect a handful to be successful. Still seems risky to me.

I went to the pain clinic a month ago the NHNN in London UK, National Hospital for Nurolgy and neurosurgery. I mentioned about going to France for surgery, she said she strongly advises against it as they do not publish the true failure rates, and the way the surgery is done is only laying down more scare tissue which in time will cause more/worse problems. You can not have the surgery done in the UK on the NHS which tells you it is not considered that it has a good enough outcome, there is a surgeon who does it privately but I haven't herd of any success stories, with no after care.

Whilst researching all this, I came across a Doctor in America who has this works in one of the big hospitals, and he said he would not consider surgery it is so an unknown condition, and there are a lot of crooks out there including those in his own field who claim to cure you, but it's all to do with the $$$$.

Although you do read of success stories also, but I think they are few and far between.

Lottanerve, I agree. There is the notion that cured people do not return to tell about their success. I disagree with that. My experience is that surgery failures that are depressed about their condition are the ones not coming back.

Bertie, spot on. I was allowed to consult with the top urologist at Kaiser before surgery and she advised against it for the exact reasons you mention. She was well aware of PNE surgery in France. She was right but I ignored her unfortunately.

Regarding the amazing success rates published by the PNE doctors, I got a lot of pressure from the staff or surgeons themselves to report good news. I will leave it at that.

You need say no more Ezer these say it all $$$$$$. I haven't even had nerve blocks as they aren't what they are cracked up to be from my research, and the long term damage they can do from having to many are just not told to the patients.they know we are desperate and most peolpe will try anything. I am going the slowly slowly whole body and mind route, diet exercise etc......and so far I am 80% better than I was in February I can now sit for a couple of hours, my sciatica has been sorted by a sports physio plus other bits and pieces that have worked for me. Cutting out all wheat/dairy/gluten. 20mg of ami, when I have good days I NEVER over do it. Lots of walking, I made myself keep walking even at the beginning when I was walking like John Wayne.

Difficult to judge it all in one sentence..
I believe that PNE is a real diagnosis and there are people benefitting from operation. The problem is the hazy diagnostic process and recently, some portion of overdiagnosis in PNE/PN field. I dont believe that everybody with the slightest sign of fibrosis in area of Alcock or everywhere has PNE..I dont get it.
The general pelvic myoneuropathy when there is not a one single point of entrapment, but rather a general havoc of the pelvic landscape is much much more frequent entity. For those people (who are a majority of pelvic pain sufferers), the multimodal therapy based on PT, medines, life style adaptaion and relax is much better solution than operation. Howevere, there are cases which are suitable for operation.

Thank you to everyone that has taken the time to research and post. Sadly at present I fall into the unsuccessful category post surgery and wish I'd read theses posts before being railroaded into decompression surgery in the UK 11 months ago. I was told that so deep were the entrapment s that surgery was the only option, £6,000 lighter and here I am today in worse pain and pelvic core is in bits..
Prior to surgery I was told that the surgeons success rate was 100%, after surgery where unforgiving I received zero aftercare I discovered that this arbitrary success rate was fictional and only assessed 6 months post surgery. The patients success measured on could they sit for the duration of a film without a flare up!!!! Hardly an endorsement for quality of life!!! I am yet to find someone that has had decompression surgery in bristol in the UK and they are now pain free. If you are out there or similar stories regardless of location please post some hope! Thanks

So very sorry for you positive poppy.........a letter to the GMC? perhaps wouldn't go a miss, 100% success rate gosh, what I don't understand is they said your entrapments where so deep so surgery was the only option, but Professor Robert says no one can tell if you are entrapped until they open you up, I read again and again " I have been told I am entrapped" but there is nothing out there to show us for defiant it all goes on a list of criteria, and the team you had your surgery done with where so called trained by the French team.

Dr Baronowskis bed side manor may not suit all, but at least he says it as it is about surgery. I also question the amount of nerve blocks people are given for this, as the knock on effect of the radiation, and the steroids seem to be swept under the carpet. Dr Baronowski plus three other specilists on chronic pain, said on the area regarding nerve blocks for the Pudendal Nerve that no more than three should be given as they are rarely a solution and the amount of radiation that goes to the pelvic area needs to be seriously considered, especially CT guided as a vast amount of radiation is used to do these nerve blocks, regards the effects on the pelvic organs, but you here of peolpe that have had loads. Also Professor Robert says more than three nerve blocks to the PN can cause permanent nerve damage. I just feel there is so much money being made from "pelvic pain" even the physio is a crazy pice, a normal sports physio is about £40.00 an hour the PN physio is a £120.00 an hour.

I really hope with time, things start to settle down for you. All the very best.