Health Organization for Pudendal Education

Violet, All of the accounts in the first link you posted are of people who had physical damage to nerves- gunshot, surgical etc. Is it possible for nerve damage to occur gradually, over a period of years or months, merely due to excessive sitting? My pain, like Ezer's was, is not present at night while I'm asleep and there is little or no pain in the morning when I wake. The pain gradually increases during the day and is nearly always worse in the afternoon and evening. If I haven't got nerve damage, what is "irritating" the nerve and why does does it stop irritating it early in the morning?

ezer wrote:For many PPD doctors, disturbed sleep is a clear sign and a way to distinguish between pain due to tissue damage and psycho physiological syndromes.

Just need a little clarification, Ezer. PPD means what? pelvic pain disorder?

So I wasn't sure I understood....are you saying the theory is that if you have pain due to tissue damage it will keep you awake at night? But if it's psycho-physiological you should be able to sleep? If that's the case, maybe that explains why I couldn't sleep.

Alan1646 wrote:Violet, All of the accounts in the first link you posted are of people who had physical damage to nerves- gunshot, surgical etc. Is it possible for nerve damage to occur gradually, over a period of years or months, merely due to excessive sitting? My pain, like Ezer's was, is not present at night while I'm asleep and there is little or no pain in the morning when I wake. The pain gradually increases during the day and is nearly always worse in the afternoon and evening. If I haven't got nerve damage, what is "irritating" the nerve and why does does it stop irritating it early in the morning?

It's an interesting question, Alan. You are lying down at night so maybe that takes the pressure off the nerve and it recovers temporarily.

Some people have posted in the past that they think their pain developed as a result of excessive sitting. For some people the damage occurs gradually (at least for me it did over time due to repetitive exercise). Do you have any theories as to what is causing your pain?

sage721 wrote: A damaged nerve causes numbness not pain. However, irritated nerves cause burning. Burning is the tell tale sign of irritated nerves.

That may be true sometimes, Sage, but I think there are other possibilities.

http://www.webmd.com/brain/nerve-pain-a ... and-causes

"Sensory nerve damage may produce the following symptoms:

Pain
Sensitivity
Numbness
Tingling or prickling
Burning
Problems with positional awareness...

There are more than 100 different types of nerve damage. The various types may have different symptoms and may require different types of treatment."

From the National Institute of Health website:

http://www.ninds.nih.gov/disorders/peri ... opathy.htm

"Neuropathic pain is a common, often difficult to control symptom of sensory nerve damage and can seriously affect emotional well-being and overall quality of life. Often worse at night, neuropathic pain seriously disrupts sleep and adds to the emotional burden of sensory nerve damage. "

"Physical injury (trauma) is the most common cause of acquired nerve injury.

Injury or sudden trauma, such as from automobile accidents, falls, sports-related activities, and surgical procedures can cause nerves to be partially or completely severed, crushed, compressed, or stretched, sometimes so forcefully that they are partially or completely detached from the spinal cord. Less severe traumas also can cause serious nerve damage. Broken or dislocated bones can exert damaging pressure on neighboring nerves.
Repetitive stress frequently leads to entrapment neuropathies, a form of compression injury. Cumulative damage can result from repetitive, awkward, and/or forceful activities that require movement of any group of joints for prolonged periods. The resulting irritation may cause ligaments, tendons, and muscles to become inflamed and swollen, constricting the narrow passageways through which some nerves pass. Ulnar neuropathy and carpal tunnel syndrome are examples of the most common types of neuropathy from trapped or compressed nerves at the elbow or wrist."

Each person who comes on this forum is different and what works for one may not work for another. One of the primary goals here is to help people think of all the possibilities and options so that they can sort through them and figure out what works for them. We appreciate everyone who contributes their ideas, shares their experiences, and tells the rest of us and what worked for them.

Violet

Yes, a mind body doctor like Dr.Schechter, Dr.David Clark, or Dr.Schubiner.

That's the claim. Tissue damage = constant pain night or day. Psycho Physiological Disorder implies that the brain resets during sleep and the pain starts when you start to think.

Violet, I was reading your posts and even your medical story has inconsistencies. Don't take it badly but you said that you went to see a chiropractor before surgery and you were close to pain free for a full day after the treatment.

How can it possibly happen? You were badly entrapped at several locations according to Bautrant and in one chiro session you get a full day of pain reprieve. That does not look like an entrapment.

Let's postulate for a second that the chiropractor got you un-entrapped for a full day, why did it take you then years post surgery to heal?

How do you explain it?

Well, the chiro used a tool that looks like a sander or a grinder (sorry I'm not real knowledgable about tools ) and worked really hard on the buttock/SI joint area with that tool on the side of my worst pain and adjusted my pelvis into alignment. It realigned the pelvis temporarily so that the ligaments weren't impinging on the nerve. By the next day my pelvis was back out of alignment and when she tried to realign it again it wouldn't hold for more than 5 minutes so she basically "fired" me as a patient and said she couldn't help because the ligaments were so bad and wouldn't hold the pelvis in place. Her assistant said my pelvis was so unstable it was like I had been hit by a truck. They diagnosed me with chronic ligament strain. So I think this helped to confirm that the nerve was compressed between the ligaments on that one side. If there had been a way to hold my pelvis in place maybe I could have avoided PNE surgery.

Not long after the chiro adjustment, I saw a PT who specialized in the pelvis and she literally gasped when she examined me and saw how floppy my pelvis was. She had me use kinesio tape and an SI belt but they didn't really help at all. She's the one who figured out the diagnosis of pudendal neuralgia.

These assessments were part of the reason I decided to go to Bautrant because I didn't want any more ligaments cut than were necessary. I figured if just the SS was cut it would release the nerve but still preserve some pelvic stability by saving the ST ligament.

Why did it take years to heal? The chiro visit was only a short time after my severe pain started. There was quite a bit of time between the chiro visit and PNE surgery and by the time I got to surgery, the nerve, the CNS, and the muscles were in a worse state -- with lots of CNS wind-up...the kind of CNS wind-up that makes you jump when the phone rings.

Also, Bautrant explained that when he cut the SS ligament it was very hardened and sclerosed and snapped back so I think there was some trauma to the nerve from that incident because initially after surgery I was worse with increased burning pain. However, by the end of the first month after surgery, the deep knife-like pain on the right sight was significantly diminished. It took many more months for the burning pain to completely subside and to get the CNS and muscles calmed down.

I can't see how emotions/repressed emotions/stress -- any of those play into my story at all. I wasn't working at the time and it was a very happy time of my life. I had never had pelvic pain from stress/emotions before so I can't see why I would have all of a sudden developed that. I had just started an intense "Body for Life" weightlifting program a couple of months before the pain hit.

Do you have any better explanation for what might have been going on, Ezer? If not, that's my story and I'm sticking to it. But I can understand why you asked for an explanation.

Violet

I suspect she used a Grafton tool. That's only supposed to work on connective tissue I thought.
I am offering no explanation. It is a very good chiropractor though... Going from debilitating pain to no pain in one session when the nerve is alledgedly so badly damaged.

I still see a problem:

1 The chiropractor frees your nerve from the ligament and you are instantaneously pain free.
2 Bautrant frees your nerve from the ligament and furthermore frees the nerve entrapped at several other locations and it takes years for the pain to abate.

Even if you add the CNS windup that you suspect, it is difficult to comprehend the scale discrepancy. From merely an hour to years. You allude to the fact that if you had done the surgery immediately upon the onset of your symptoms, you would have healed faster. However it is contradicted by real life cases. People that rushed to surgery at the onset also suffered for years afterward no differently then people that waited.

Violet M wrote:
It's an interesting question, Alan. You are lying down at night so maybe that takes the pressure off the nerve and it recovers temporarily.

I have often tried lying down for long periods in the daytime when I have bad pain but it doesn't help.
I've concluded that the reduction of pain in the morning is something to do with what happens while I'm asleep.
If the nerve were damaged, presumably it wouldn't recover in just six or seven hours.If the pain is due to pressure on the nerve , why doesn't simply lying down in the daytime relieve the pain?

Yes Alan, if there was truly an entrapment (the nerve crushed, stuck) there is no way any position would make you recover almost 100% in a few short hours. Then why does the pain come back in a few minutes upon waking up even if you continue to lay in bed?

The only plausible explanation is that your brain is involved in the process. Not some elusive and probably fictional entrapment. Again I am sure PN is part of the process. PNE needing decompression is much more dubious to me.

emotions/stress -- any of those play into my story at all. I wasn't working at the time and it was a very happy time of my life. I had never had pelvic pain from stress/emotions before so I can't see why I would have all of a sudden developed that. I had just started an intense "Body for Life" weightlifting program a couple of months before the pain hit.

Not that it applies to you and I am not implying that.
I never had pelvic pain from stress either before. Nothing. No sexual difficulties. The only thing is that I fell and strained my adductor similarly to your exercise accident it seems.

I had been stressed at work in the past few months but not at the time of the onset of my pain. I was in a good mood and doing well mentally. I never had psychological issues. I never suffered from depression.

Yet...

It is a constant BTW. Pain does not start during a stressful period but after. It is always triggered by a benign accident like a fall or bike ride etc. that sets the neural pain path in action.

Again I am not implying it is your case but we are not that dissimilar in regards to what happened at the onset of pain. In many ways I was dealing too well with stress at work and had always a zen attitude no matter the difficulties but some parts of my brain did not cope with it.

What trips me up in the mindbody conncetion is the following. I didn't have a physical trauma at the onset of my pain. I woke up one morning and took a 2 hour drive. On my return back, I started to experience burning sensation. The burning sensation was at the tip of the penis and would only occur when I sat. After a week, I went to a urologist and he prescribed atharax(anit-hestamine). 10 day dose.
Pain miraculously disappeared on the 10th day. Pain was gone for a month. It returned one month later. I was very stressed the months before the onset of pain. I am trying the mindbody approach. Read several books includindg Monte's. Original symptoms have evolved. No more burning at the tip of penis. Symptoms are mainly in pirineum and both buttocks, back of legs, and feet. I didn't have a lot of these symptoms in the beginning. Of course Doctors say CNS. I don't have pain when I sleep and symptoms start when my butt sits on a surface. Duration of symptom onset has shortened also. I don't experience pain when lying down. Only when I sit and stand in one spot. No pain exercising. This is my hang up. If I get up in the morning with no pain, sit on a chair, then the pain will start to creep in. The longer I sit troughout the day the symptoms get worse. However, if I get up in the morning, go to a toilet seat. Then no pain. No matter how much thinking I do throughout the day, if I go to a toilet seat, I have no symptoms. So, then I start thinking compression. I think that I must be putting pressure on a compressed nerve while sitting. Or else, why wouldn't I have symptoms on toilet seat? The mindbody doctors have told me that my mind is having me believe ... chair = pain, toilet seat = no pain. But this is where I have trouble accepting this theory. Thoughts?