ticking time bomb, does your pain build the longer you sit?

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
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pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

ticking time bomb, does your pain build the longer you sit?

Post by pianogal »

for me, the longer I am sitting the higher my pain grows... I start at 10 seconds sitting at a level 4 pain, and if I sit for 30 minutes, it will go to a level 7/8, and 1 hour takes me to almost level 10 going out of my mind. Also, the longer I sit, the more the pain area spreads... at first it's just labial, but then it spreads to lower hamstrings, sacrum region, and clitoris going cold. it's like sitting on an oven that is heating up. and also the longer I sit, of course, the more flared up I am for days after.

I wonder if anyone else experiences pain that builds or if your pain is static. I always assumed this was just part of pne, then I realized maybe some of you don't experience this.
my pain is like a ticking time bomb...

ps- If I really overdo it, at the time of sitting say for 3 hours I get shooting feelings all throughout my legs and even my arms occasionally, with a shooting feeling behind my eyes. that is really weird... but I never let it go that far anymore.
-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
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: ticking time bomb, does your pain build the longer you s

Post by HerMajesty »

mine is retroactive...I can drive to the next State; it's when I get there that I regret it.
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.
kat
Posts: 203
Joined: Fri Sep 17, 2010 3:44 pm

Re: ticking time bomb, does your pain build the longer you s

Post by kat »

Pain builds with sitting. I usually hold myself up with my arms so I'm not driving of course.
Sitting on the noodle chair that hermajesty displayed really helps my PN pain, but it does nothing for my obturator pain.
I'm still hoping that will go away on its own (fat chance though).
I fear I will be doing nerve blocks before a year has passed.

Kathy
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
roxy1
Posts: 15
Joined: Thu Sep 30, 2010 2:49 am

Re: ticking time bomb, does your pain build the longer you s

Post by roxy1 »

For me the longer I sit the worse it is, especially for a day or two after the sitting too much event. It also makes a big difference how I sit...if I sit on my sacrum as opposed to my butt I can get away with it a little longer also settings in the car seat(always with a cushion) help some. I raise the front of the seat and tilt the back of the seat and almost never try to go more than 30 min one way anywhere. I try really hard not to sit much. I do find others feel uncomfortable when you stand all the time but they can get over it ;). I find if I tell them right up front that I stand because I can not sit after the first few times they get used to it. I am not sure why people always ask if my back is ok when they know the problem is my crotch...They don't want to think about it maybe I guess.

Roxy
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: ticking time bomb, does your pain build the longer you s

Post by pianogal »

Roxy, sounds like the story of my life too! People are so strange. Even doctors offer me a "seat". Everyone's more comfortable calling it your "back" too. Thanks for sharing. Seeing similarities between us helps us better analyze what is going on with all of us and what is extraneous.
-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
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Amanda
Posts: 450
Joined: Thu Sep 02, 2010 2:33 pm
Location: Dublin, Ireland
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Re: ticking time bomb, does your pain build the longer you s

Post by Amanda »

Sitting for any length of time is not pleasant for me, and yes it escalates by the minute....if I slouch i get away with a little while longer at the time, but however the payback afterwards is terrible with those shocks shooting everywhere from the crotch to the knees.
I get tired when people ask how my back is......DOH I dont want to keep mentioning my crotch but they dont get it that back pain is acceptable but crotch pain is not.... :twisted: :twisted: :twisted:
I try to avoid sitting at all costs....I always take my cushions in case I might have to sit as it makes the aftermath easier......but so long as I have ice I can control it better...my biggest fear in everyday is not having ice as it really helps cool things down so much.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: ticking time bomb, does your pain build the longer you s

Post by HerMajesty »

roxy1 wrote: I raise the front of the seat and tilt the back of the seat
Roxy
Roxy, if that position is best for you, make sure you check out my cheap homemade car seat post in the lifestyle adaptations area. I made it to accomodate that kind of posture.
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.
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