Joe,
Unfiortunately not much is definitive for this condition. All the tests plus history are used by the doctors for diagnosis but singles results do not always tell the story. The nerve blocks I had first unguided were not very informative but the guided gave full relief for a few hours. The MRN I was sent to was not by Dr Fuller and was just to rule out "other things" and it had no clues for PN or PNE. They say the only true way to know if you have PNE is during the surgery when they open you up. I was going down hill less able to sit and with nerve blocks and history declared a candidate and had surgery, it was PNE. Wish you the beat and others have had MRN or MRI with PN issues showing up but others have not and like myself had it. Sorry I am not sure how to guide you but thought my info and other info might help.Ireally wish we had better details for diagnosis to avoid tests that may or may not show anything! Wishing you the best.
Janet
Male suffering with PNE/PN for 3 years now
Re: Male suffering with PNE/PN for 3 years now
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: Male suffering with PNE/PN for 3 years now
Hi Joe,joeparz wrote:Was just wondering everyones opinions on an MRN. Is it worth it? Its going to cost me 2000 dollars out of pocket to get it. Do people usually find this test helpful at helping to diagnose this issue. I just would hate to spend 2k and get a totally normal scan.
As I've stated in another thread, imaging is not part of the diagnostic criteria for pelvic neuropathies. Quite honestly, I had the MRI in NY for my own peace of mind. I already had the "official diagnosis" via symptoms, physical exam, EMG testing, ineffective conservative treatments, and what was considered a positive result from the nerve blocks. With all that under my belt, I personally felt more comfortable about my decision to have surgery after having the scan done.
joeparz wrote:Also if i were to get a nerve block and it were successful would my feeling in my penis come back, and would the pain in the head go away?
Maybe. Possibly temporarily. Please keep in mind that the blocks are used for diagnostic criteria. They're not meant to cure.
Not necessarily. Are you scheduled for an EMG before meeting with Dr. Conway in February?joeparz wrote:What if i still had symptoms after the nerve block, would that mean this might not be pudendal related?
Kind regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: Male suffering with PNE/PN for 3 years now
Hallo Joe
I read your story and found many similaraities, especially regarding this vague, diffuse constant and burning neuropathic pain in pelvis, which I am struggling with more than 4 years now. Definitely our pelvis is somehow "out of synchrone" and is not working properly. More than classic PNE, I assume we both (and many others) are struggling with pelvic myoneuropathy - sometimes it is difficult to say whether nerves or muscles are main culprit of our suffering - they are dysfunctional both of them. Muscles irritate nerves and painful nerves are cramping muscles...viscious circle.
I am also familiar with this constatnt mild pain at the base of penis, in scrotum and along the shaft, which is hugely aggravated by any sexual activity. I was considfering the surgery, dorsal nerve decompression, but I think the risk outweights the benefits. I had this condition in 2009-2010 maybe 5 times with complete recovery that means that some general pelvic myoneuropathy is more probable than single PNE. If there was a classic entrapment (I mean entrapment imposed by real physical obstacle) I would not be able to fully recover. But each ejaculation and sexual acutivity worsened my condition and eventually made it a chronic state. I regret that back in 2009/10 I did not start PT immediately and I did not avoid any sexual activity for lets say half year to fully recover....But maybe this would catch me later.
Anyway, I am still doing PT twice monthly and some minor stretches 3 times weekly with some moderate effect. I got the feeling that the stretches aimed to release tension in groin area and pubic area are more beneficial than internal rectal trigger points release. Still having problems but fighting bravely.
I read your story and found many similaraities, especially regarding this vague, diffuse constant and burning neuropathic pain in pelvis, which I am struggling with more than 4 years now. Definitely our pelvis is somehow "out of synchrone" and is not working properly. More than classic PNE, I assume we both (and many others) are struggling with pelvic myoneuropathy - sometimes it is difficult to say whether nerves or muscles are main culprit of our suffering - they are dysfunctional both of them. Muscles irritate nerves and painful nerves are cramping muscles...viscious circle.
I am also familiar with this constatnt mild pain at the base of penis, in scrotum and along the shaft, which is hugely aggravated by any sexual activity. I was considfering the surgery, dorsal nerve decompression, but I think the risk outweights the benefits. I had this condition in 2009-2010 maybe 5 times with complete recovery that means that some general pelvic myoneuropathy is more probable than single PNE. If there was a classic entrapment (I mean entrapment imposed by real physical obstacle) I would not be able to fully recover. But each ejaculation and sexual acutivity worsened my condition and eventually made it a chronic state. I regret that back in 2009/10 I did not start PT immediately and I did not avoid any sexual activity for lets say half year to fully recover....But maybe this would catch me later.
Anyway, I am still doing PT twice monthly and some minor stretches 3 times weekly with some moderate effect. I got the feeling that the stretches aimed to release tension in groin area and pubic area are more beneficial than internal rectal trigger points release. Still having problems but fighting bravely.
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
Re: Male suffering with PNE/PN for 3 years now
Additional remarks: I have read now this article posted by greeneyes (about PGAS in men). Very interesting info. Even I dont have classic symptomatology (unwanted orgasms etc.) I still have some pin and needles sensations in the upper (proximal) part of penis, in scrotum and in pubic area (dermatom of pudendal nerve). I have also had a partial success with TENS unit application on pubic area. Does anybody have some succes with some cream apllied on that area?
In that article they clearly distinguish between pudendal nerve entrapment and pudendal neuropathy of small fibers at dorsal nerve. I might be more candidate for the latter one...(except of pelvic floor dysfunction which is bearable most of the time). Does anybody know what might be the most effective treatment of that small fibers neuropathy? Neurontin? Valium? Cognitive behavioral therapy?
Many thanks for your inputs
Flyer28
In that article they clearly distinguish between pudendal nerve entrapment and pudendal neuropathy of small fibers at dorsal nerve. I might be more candidate for the latter one...(except of pelvic floor dysfunction which is bearable most of the time). Does anybody know what might be the most effective treatment of that small fibers neuropathy? Neurontin? Valium? Cognitive behavioral therapy?
Many thanks for your inputs
Flyer28
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly