I am growing increasingly convinced that PN symptoms can come from an injury anywhere along the pudendal nerve or associated areas near it but that in time it will create PN pain everywhere. That inflammation in any of the areas near or on it causes scar tissue... and that once the inflammation causes scar tissue, the pain in the nerve is first focal, but gradually spreads to all the nerve locations within time.
agree? disagree?
For example, possible causes of PN: urinary frequency, constipation, bad papsmere, inflamed S5, inflamed implanted sacral stimulators, injury by falling, etc... all these varied instigators cause the same pain in the end...
So perhaps, the solution is just releasing the nerve along the entire course, even though the pain is instigated in a focal way? Because a release provides slack in the nerve... so the primary problem, even if not near where the release was... has slack and is not in tension and is relieved.
(or perhaps we should be approaching it from the instigating factor locations...) ?
This is just a theory... from observing lots of people on the forums and from analyzing Dr. Dellon's posts in conjunction with other doctors posts.
I may be wrong. But it seems right to me right now.
So I conclude that avoid all instigating factors, avoid inflammation, and if you find yourself in that place, perhaps a generic release is the only answer to create slack in the nerve... you want to create the most slack so it is not tensioned, regardless of where the pain stemmed from.
thoughts?
What do you think?
theorizing...
theorizing...
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
Re: theorizing...
My theory has always been that the PN innervates only a particular portion of bodily real estate...but that the pain from it causes people to change how they use their bodies (leaning to one side to sit, walking stooped over, lying down for long periods of time and incurring muscle atrophy that means when they do move maybe they do so less correctly and incur more muscular issues, etc.).
I've known people who got in a car accident which caused soft tissue injury, and without the right attention to it, it set them up for chronic pain for a long time as they were weakened and weren't using their bodies in the same way. There is hope, but it can take a lot of work to pull out of it.
That's my two cents.
I've known people who got in a car accident which caused soft tissue injury, and without the right attention to it, it set them up for chronic pain for a long time as they were weakened and weren't using their bodies in the same way. There is hope, but it can take a lot of work to pull out of it.
That's my two cents.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
http://www.tipna.org
Re: theorizing...
I dunno, PG. Very interesting theory, but I'm leaning more towards Celeste's theory. Everyone is so different and the way each person reacts to pain is different. My theory is PN(E) is not a disease but a direct result of a trauma. Whether it be a fall, surgery, weight lifting, bicycling, etc ... In my case, it was a fibroid complication. I honestly don't feel like I have referred pain. My pain is very specific and very localized. I'm only able to be aware of that now in the absence of the myofacial component I had going on. I know there has been some great debate about which came first: nerve pain or nerve pain caused by myofacia. I can see how BOTH could be accurate and I think it's a discredit to rule one or the other out. For me, there's no doubt in my mind that I experienced the nerve pain first. The unspeakably violent nature of this pain caused a natural protective defense where my muscles clenched, adding additional pressure and pain to the already traumatized nerve. I always knew the myofacia was secondary and not the "underlying cause" of my condition. And then you get into the compensation thing. It makes sense to me that you would acquire additional components of pain if you're not using your body correctly. Especially over looooooong periods of time. Not to mention, we're not talking about a hand, or your leg. The pelvis is the CORE of your being.
Warm regards,
Karyn
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.