Stages of pn
Stages of pn
Hi, can anyone tell me the standard time frame around the diff stages of pudendal neuralgia. Do most people suffer in one area to begin and leads to other areas and if so over what time? I know we are all diff but general info would be helpful. Thanks
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pomegranate
- Posts: 157
- Joined: Sat Sep 18, 2010 3:12 am
- Location: Oklahoma
Re: Stages of pn
Chris,
I don't know what's standard, but I can share my journey.
2008--I had only provoked vulvar pain (sex, tampons, tight clothing)
2009--low level bladder spasms, some continual burning, some rectal discomfort. None of this impacted my daily life.
late 2009--pain with sitting, all the above symptoms got worse, impacted quality of life and daily living
throughout 2010--experienced all PN symptoms at one stage or another and at varying levels
BUT, and that's a big BUT--since initial onset in late 2009, my pain has not worsened. It has simply moved and changed.
I don't know what's standard, but I can share my journey.
2008--I had only provoked vulvar pain (sex, tampons, tight clothing)
2009--low level bladder spasms, some continual burning, some rectal discomfort. None of this impacted my daily life.
late 2009--pain with sitting, all the above symptoms got worse, impacted quality of life and daily living
throughout 2010--experienced all PN symptoms at one stage or another and at varying levels
BUT, and that's a big BUT--since initial onset in late 2009, my pain has not worsened. It has simply moved and changed.
2008: mild pelvic pain and PFD began
2009: true PN/PFD pain, two PN blocks, normal PNMLT
2010: PT and conservative management with moderate improvement in PN/PFD symptoms
2011: surgery for extensive endometriosis; arthroscopic hip surgery to repair labral tear and FAI (right hip)
2012: C-section delivery of first child
2014: arthroscopic hip surgery to repair labral tear and FAI (left hip); C-section delivery of second child
Ongoing physical therapy since 2010 for both pelvic floor and hips.
2009: true PN/PFD pain, two PN blocks, normal PNMLT
2010: PT and conservative management with moderate improvement in PN/PFD symptoms
2011: surgery for extensive endometriosis; arthroscopic hip surgery to repair labral tear and FAI (right hip)
2012: C-section delivery of first child
2014: arthroscopic hip surgery to repair labral tear and FAI (left hip); C-section delivery of second child
Ongoing physical therapy since 2010 for both pelvic floor and hips.
Re: Stages of pn
Chris, there isn't really a standard time frame because it may depend on what your activities are. Some people can live with minor symptoms the rest of their life but if you continue to exercise like I did your problems could progress rapidly. For me it took about a year and a half to go from twinges/aches to full blown PNE.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Stages of pn
I didn't get diagnosed until it got very bad because I have neuropathic itch so I spent a lot of wasted time with dermatologists, allergists, nutritionists. Time frame: Neuropathy in toes / feet 2004, neuropathy in pubic area 2006, neuropathy in anal area 2008, severe neurogenic bladder leading to near total disability 2009. Nothing was a major event, all isues started mildly and insiduously and grew more and more intense over time.
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: Stages of pn
Thanks everyone for your experiences, really helpful. Unsure if got PN or not or maybe in denial but after going through a sphincterotomy that i didnt need as still in pain maybe its time to open my eyes a little and accept more than just a possibility.