PGAD information/group

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PGAD information/group

Postby KateC » Thu Dec 06, 2012 10:12 pm

Hi,
Was looking at the pgad group. One of the women put her story out everywhere which was very brave. She committed suicide however. I am not sure if this is the right place to post this. Very sad. I am still trying to figure out exactly what is wrong with me. Kate


http://www.tampabay.com/features/humani ... 263980.ece

http://www.tampabay.com/news/health/med ... de/1264559
KateC
 
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Re: PGAD information/group

Postby HerMajesty » Fri Dec 07, 2012 4:16 am

did you see the other thread on the news article and sucide, here it is: viewtopic.php?f=3&t=4154
My personal thought is that PGAD is just one of many different ways a neuropathy effecting the clitoral area can manifest itself. I have neuropathic itch in many areas including clitoral, but it is indistinguishable from pain on an EMG: both will simply show abnormal nerve conduction. PGAD would probably produce similar test results, but the impact on one's quality of life is potentially greater. Regardless, it suggests nerve compression someplace at or between the sacral spinal cord and the dorsal nerve to the clitoris. The poor woman in the article never got beyond the vast sea of ignorant doctors out there, to see a real specialist who understands these disorders. Hopefully you are aware that there are links on the home page to PT and Physician listings: If not, now you know. The practitioners listed understand these conditions and can help you in your quest to figure out what is wrong and how to treat 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.
HerMajesty
 
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