It does sound very much like PN, and neuropathy can be ANY CHANGE IN SENSATION, not just pain. I have mild numbness and major neuropathic itch. If you look around the site, there are specialized diagnostic tests, both to see if you have PN and to try to discover the source - they are just not things done by many providers so you need to access the "find a Doctor" portion of this site and perhaps travel to get most of the tests. Unfortunately a pudendal nerve block, one of the most accessible tests, probably won't work in a case of numbness.
Before you start travelling for specialized pelvic testing, you should probably get your back looked at again (Updated MRI? Discogram?). Any impingement on the spinal cord or nerve roots further up, can cause problems lower down. So since you have known disc issues, that would be the simplest thing to rule out as a possible cause.
Help! Please
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Help! Please
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.
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catherine a
- Posts: 291
- Joined: Sat Sep 18, 2010 4:46 am
- Location: Perth Western Australia
Re: Help! Please
I agree that it does sound like PN pain. In hindsight, I did experience a 'lump in the rectum' feeling after I had a D&C and I just thought it was because the doctor had been having a look around the pelvic floor prior to my hysterectomy.
I now know that it wasn't normal to have this sensation. I know of a lady who developed PN symptoms quite severely following a vaginal probe ultrasound. She did eventually recover but it took about two years to come good so I guess she had a compression of some sort and not an entrapment. She was desperate for answers and none of her doctors could explain what was happening to her. (this person has moved on with her life and wishes to put PN behind her.) It's a nightmare she'd rather forget. She's one of the fortunate ones who eventually did get the issue 100% resolved.
Symptoms can start off this way LDF08 and become worse as time goes by. The sooner you get to a specialist who has knowledge of and who treats Pudendal Neuralgia the sooner you'll get this resolved. Members who have been suffering for a very long time will tell you not to waste time and money going from Doctor to doctor when none of them can help you. It's a huge bonus if you do have a doctor who is willing to learn something new and help you but the best advice is to go straight to a PN expert. Most of us have to travel far distances to find these these experts. I had to travel from Australia to France but now people in Australia & New Zealand can be treated here thanks to a few doctors who took an interest.
Before PN can be diagnosed you need to have other causes ruled out. You'll need to have an MRI of the pelvis. The PN specialist can arrange this. Some people have come good from physiotherapy and Botox and not everyone has an entrapment.
Best of luck. Keep in touch. We're all here to offer you support and information and we understand exactly what you're going through.
Catherine
I now know that it wasn't normal to have this sensation. I know of a lady who developed PN symptoms quite severely following a vaginal probe ultrasound. She did eventually recover but it took about two years to come good so I guess she had a compression of some sort and not an entrapment. She was desperate for answers and none of her doctors could explain what was happening to her. (this person has moved on with her life and wishes to put PN behind her.) It's a nightmare she'd rather forget. She's one of the fortunate ones who eventually did get the issue 100% resolved.
Symptoms can start off this way LDF08 and become worse as time goes by. The sooner you get to a specialist who has knowledge of and who treats Pudendal Neuralgia the sooner you'll get this resolved. Members who have been suffering for a very long time will tell you not to waste time and money going from Doctor to doctor when none of them can help you. It's a huge bonus if you do have a doctor who is willing to learn something new and help you but the best advice is to go straight to a PN expert. Most of us have to travel far distances to find these these experts. I had to travel from Australia to France but now people in Australia & New Zealand can be treated here thanks to a few doctors who took an interest.
Before PN can be diagnosed you need to have other causes ruled out. You'll need to have an MRI of the pelvis. The PN specialist can arrange this. Some people have come good from physiotherapy and Botox and not everyone has an entrapment.
Best of luck. Keep in touch. We're all here to offer you support and information and we understand exactly what you're going through.
Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.