Health Organization for Pudendal Education

The PN doctors as well as the PTs at PHRC that I have traveled to see over the past 18 months all believe that surgery was what gave me 5 years of virtually pain free life. In years past I would have disagreed with this as I never attributed my previous success to surgery. However, now I do not know. Looking at the data, it can make sense. My recovery began about 10 months after my 2nd surgery and I achieved being virtually pain free by the 17-18 month mark, I think. Of course the fact that I am back in pain, and actually increased pain, with less function than when I was at my worst pre-op, whatever helped, PT, surgery, magic beans , etc. was ultimately not a success over the long term. The doctors, however, looked at me as a patient who had "profound improvement" from surgery. If they thought this, then why not suggest another surgery that could potentially achieve the same results?

My original point in posting on this thread was simply to add my experiences that the PN aware doctors I have seen recently (Hibner and Conway) were not encouraging me to have surgery at all and, especially Dr. Conway, spent significant time with me discussing treatment alternatives. I understand if others have had different experiences or information, but wanted to add in my own.

Stephanies

Alan1646 wrote:There is nothing to be ashamed of with regard to suffering from an anxiety disorder, but there is widespread prejudice against people with mental illnesses and so many people will react angrily to the suggestion that they have a psychological condition. It is no more an insult to suggest an anxiety disorder than it is to suggest nerve damage from a fall. Personally, ( although I don't have PGAD) I felt optimistic and even elated when it was suggested that the pain from my diagnosed PN could be caused by psychological factors, because that implied the possibility of a total cure.

You are right Alan, there is a stigma attached to having a mental illness or psychological disorder. It's unfortunate but it's reality.
That is one reason people feel insulted when they are told they have a psychological problem.

Also, I think the discussion of the mindbody connection on Dr. Echenberg's website makes some sense because it's not focused on the problem being purely psychological but rather on the pain signal pathways becoming permanent and developing into a chronic pain pattern which allows for the fact that initially there was an injury to the nerve. That's completely different than telling someone they are a headcase from the outset and gives a plausible explanation for people who know that their pain started with a pelvic injury, surgery or accident, rather than an anxious emotional state.

Violet

But Violet for all of us it started with a small accident. It is what Dr. Echenberg says.

I fell. It should have healed in 3 days. Instead I had 11 years of pain.

Somebody on the forum coughed and had PN pain from then on. It should have healed in a few hours.
Somebody carried a coffee table and had PN pain from then on. It should have healed in a few days.
Somebody fell from a couch and had PN pain from then on. It should have healed in a 3 days.
Somebody had sex while not fully erect and had PN pain from then on. It should have healed in a few hours.

The pain is then maintained by the brain because of emotional trauma. Mind and body. Body and mind.
Therefore it is useless to have PT, Injections, surgery in many (most?) cases.

Heal the mind, not the body. The body has repaired itself a long time ago.

Watch the videos Dr. Echenberg posted. He has one from Dr. Peter Levine. Dr. Levine is all about pain from emotional trauma.

Dr. Echenberg wrote: "The mind is an important factor in chronic pain and other stress and stress-related disorders".

Stress and stress-related disorders. Hmmm! Pretty close to what I wrote and that you found so offensive.
http://www.instituteforwomeninpain.com/ ... connection

Violet said,

[quoteThat's completely different than telling someone they are a headcase from the outset ........[/quote]

Would any doctor actually say this to a patient quite so bluntly?

Thank goodness the psychiatrist I saw wasn't so insensitive. SJ

nonsequitur wrote:But Violet for all of us it started with a small accident. It is what Dr. Echenberg says.

I fell. It should have healed in 3 days. Instead I had 11 years of pain.

Somebody on the forum coughed and had PN pain from then on. It should have healed in a few hours.
Somebody carried a coffee table and had PN pain from then on. It should have healed in a few days.
Somebody fell from a couch and had PN pain from then on. It should have healed in a 3 days.
Somebody had sex while not fully erect and had PN pain from then on. It should have healed in a few hours.

The pain is then maintained by the brain because of emotional trauma. Mind and body. Body and mind.
Therefore it is useless to have PT, Injections, surgery in many (most?) cases.

Heal the mind, not the body. The body has repaired itself a long time ago.

Watch the videos Dr. Echenberg posted. He has one from Dr. Peter Levine. Dr. Levine is all about pain from emotional trauma.

Dr. Echenberg wrote: "The mind is an important factor in chronic pain and other stress and stress-related disorders".

Stress and stress-related disorders. Hmmm! Pretty close to what I wrote and that you found so offensive.
http://www.instituteforwomeninpain.com/ ... connection

Nonsequitur, I completely agree your quote from Dr. Echenberg and with everything you have said in your most recent post. I do not find the theory about the mindbody connection offensive.

The two things I find offensive are as follows:
1. The argument made earlier in this thread that PNE does not exist or is a bogus diagnosis.
2. That PGAD or PN/PNE is an anxiety disorder. That may be true in some cases of PGAD and chronic pelvic pain, but to say it is true in all cases is offensive.

In addition to what you posted from Dr. Echenberg's site, he also says the following:
"Pudendal nerve pain (neuralgia) may occur when the nerve is injured, inflamed, compressed, restricted, or "trapped"."

Chronic pelvic pain conditions are not necessarily stress related disorders. Dr. Echenberg's website backs me up on this. http://instituteforwomeninpain.org/comm ... treatments. I believe there are various causes of chronic pelvic pain with pudendal nerve entrapment being one of them. So back to the original topic of this thread -- I am refuting the statements made by some posters that based on the article posted at the beginning of this thread, that PNE is not a legitimate diagnosis or doesn't exist.

The reality is, there is a stigma associated with being a psychiatric patient. Check out this article. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1489832/ Based on this reality, it is understandable that people would find it offensive to be told they have a psychiatric condition when they don't.

Susanjane wrote:Violet said,

"That's completely different than telling someone they are a headcase from the outset ........"

Susanjane wrote:Would any doctor actually say this to a patient quite so bluntly?

Thank goodness the psychiatrist I saw wasn't so insensitive. SJ

Susan, no, I doubt they would use the exact words "you are a headcase." The neurologist I saw told me to go see a psychiatrist because she found no "medical" explanation for my symptoms. I guess to me that was the same as concluding I was a psychiatric case rather than a medical case. Experiences similar to this are common for chronic pelvic pain and PGAD patients.

Violet

Susanjane wrote: ↑Sun Dec 13, 2015 6:51 pm Violet said,

[quoteThat's completely different than telling someone they are a headcase from the outset ........ spelling bee answers

Would any doctor actually say this to a patient quite so bluntly?

Thank goodness the psychiatrist I saw wasn't so insensitive. SJ
[/quote]

It's crucial for healthcare professionals to communicate with empathy and sensitivity. Directly labeling a patient as a "headcase" would be unprofessional and hurtful. Compassionate care fosters trust and effective treatment.