I would love anyone's ideas as to how, mechanically, my PN happened. I go over and over in my mind what I was doing the day before it started....wielding a pickaxe to break up weeds in the yard. The next day I developed numbness in my lower back and vulva. What in the heck do you think happened? Please let me pick your brains!!! I am perseverating on it.
cari
Cause of my PN
Cause of my PN
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
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- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Cause of my PN
My original pelvic pain syndrome, which was interstitial cystitis (PN started much later), was due to mechanical injury of the pelvic joints. For me it was hiking over rough terrain with a heavy pack, and I have since found out I have a defective gait pattern secondary to a common foot malformation, morton's toe. But seriously, any time a joint is forced traumatically past its normal end range of motion, such as in your case twisting, bending, pulling whilst weilding a weighted object, you can get injured. You are probably especially at risk if this was an unusual level of activity for you, and your core muscles were not strengthened through frequent physical labor.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: Cause of my PN
Thank you for your response, Her Majesty (would LOVE to know your real name)......my core muscles definitely are weak and I was so stupid (yes, being self-deprecating) for doing that kind of physical labor, that may very well have been a decision that will affect the rest of my life.
cari
cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Re: Cause of my PN
Cari,
I am of the opinion that some people are just predisposed to develop this condition and why that is the case is not necessarily knowable like so many things in life. Don't blame yourself for something you did. 99.999 per cent of the people who ride bikes don't get PN but a few do and no one knows why. Sometimes stuff just happens. Hang in there.
Best Wishes,
Don
I am of the opinion that some people are just predisposed to develop this condition and why that is the case is not necessarily knowable like so many things in life. Don't blame yourself for something you did. 99.999 per cent of the people who ride bikes don't get PN but a few do and no one knows why. Sometimes stuff just happens. Hang in there.
Best Wishes,
Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
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- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Cause of my PN
you weren't stupid for doing physical labor. I agree with Don, people are really predisposed. Because of my pelvic injury I had a leg length discrepancy for 25 years (not a true leg length discrepancy, just pelvis twisted). I got IC, migraines, PNE and other neuropathies as a result. When I found a PT that fixed my pelvis, I told a friend about it, and it turned out she too had a leg length discrepancy for even longer than I had. She had no medical complaint about it at all, although upon reflection she said she had trouble "holding it" when she had to pee, not unusual for a middle aged woman with a child. Anyway I took her to my PT and her leg length discrepancy turned out to also be due to pelvic joint dysfunction and was corrected. Look at the symptomatic difference between her and me. I think most people walk around with some wear and tear in their bodies, but some react to it with more sensitivity in the nervous system. You can't tiptoe around like you're made of porcelain your whole life.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: Cause of my PN
Hi Carolynm,
You know you might just have pn & not pne. If you have pn you know with self care (avoid sitting) and in time it could go away. I might be wrong but intuitively I feel I have pn and not pne. I've had one nerve block which made my pain go away for 2 days of constant sitting (drive home) which is a positive sign for pn/pne. I had flares after... like so many here have reported, but that seems to be gone now and have been feeling a lot better. I don't take anything except 10mg Amilytritaline 2xs per day. I have been avoiding sitting, staying regular (bm) with the help of miralax, that was a big problem for me. I also think some people are predisposed to get this condition.
Either way please don't beat yourself up, it's not your fault this happened.
You know you might just have pn & not pne. If you have pn you know with self care (avoid sitting) and in time it could go away. I might be wrong but intuitively I feel I have pn and not pne. I've had one nerve block which made my pain go away for 2 days of constant sitting (drive home) which is a positive sign for pn/pne. I had flares after... like so many here have reported, but that seems to be gone now and have been feeling a lot better. I don't take anything except 10mg Amilytritaline 2xs per day. I have been avoiding sitting, staying regular (bm) with the help of miralax, that was a big problem for me. I also think some people are predisposed to get this condition.
Either way please don't beat yourself up, it's not your fault this happened.
- helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Cause of my PN
You could have triggered muscle spasms, which in turn has caused nerve irritation causing the numbness you mentioned. A good physio may be able to help you identify those muscles and use a number of techniques to try and relax them. The piriformis muscle is often problematic, especially if your numbness is very low in your back (bum level)
The sciatic and pudendal nerve pass each other at the low spine end of the piriformis muscle (sciatic notch) and a tight piriformis can cause problems for both nerves. Of course it could also be 2 separate reasons for back and vulva numbness too.
Have a look on http://www.spinal-health-care.com/tips- ... stretch-2/ or YouTube for some easy piriformis stretches, don't go crazy with them as they can put extra pressure on the nerves too, but even experiencing that could give you an indication that there is piriformis involvement just stop if it hurts too much. In my case it always hurts like hell BUT eases a bit after a few stretches.
The sciatic and pudendal nerve pass each other at the low spine end of the piriformis muscle (sciatic notch) and a tight piriformis can cause problems for both nerves. Of course it could also be 2 separate reasons for back and vulva numbness too.
Have a look on http://www.spinal-health-care.com/tips- ... stretch-2/ or YouTube for some easy piriformis stretches, don't go crazy with them as they can put extra pressure on the nerves too, but even experiencing that could give you an indication that there is piriformis involvement just stop if it hurts too much. In my case it always hurts like hell BUT eases a bit after a few stretches.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.