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genitofemoral neuropathy
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genitofemoral neuropathy

My major symptom is nerve pain on sitting which has been present for almost a year. Sitting produces discomfort in ischial tuberosities and burning mostly in perineum and gluteal fold. The muscles of my pelvic floor have been tight and sore and treated internally by a physical therapist.  I am currently on Lyrica. When I press somewhat deeply on the area to the right and left of my anus, I feel nerve discomfort. I'm trying to figure out which nerve I'm dealing with- the pudendal, sciatic, or posterior cutaneous. Any thoughts? Thank you.
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Avatar_m_tn
I have the exact same symptoms(3 years), most likely from a bout with Septic Shock & DKA(coma in 3/2005). The meds.(Levophed and Xigris) caused ischemia and the 1165 blood sugars further damaged the nerves.  I also had a 'collapsed' pelvic floor, so it was tough figuring out exactly which pain was which. I am finally being treated by a PNE specialist in Houston(Ken Renney), Texas.  He believes it is Pudendal Neuropathy / Entrapment.   Here is an image of the area, http://tipna.org/info/anatomical_images/MalePudendalNerve.jpg  I believe that I have perineal neuropathy as well, where the pain coming from the tuberosities may be the perineal branch of the posterior femoral cutaneous nerve.  In the image, that is the nerve right over the tuberosity.  My physical therapist says she can feel the nerves when she treats me internally thru the rectum. She says they have become thickened and hardened from inflammation. The first neurologist just masked the symptoms 2 years ago with Lyrica and now I 've worsened everything by sitting too much over thay period. Do not sit if you can help it!  
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Avatar_f_tn
As a matter of fact, I have a phone appointment with Dr. Renney to see if I qualify as having PNE. I was ready to give up until I found tipna.org - I think I have it. I've had pain in that area you are speaking of for a year. I was not even sure who to see. The surgeon who performed my fusion last year blew me off. My regular doctor sent me to the GYN and a Gastro specialist because of pain in that area as well as the Ischial Tuberosity (horrible pain). If I coughed or (God forbid) sneezed I would almost pass out from the pain. Also felt like a tampon was stuck inside me. Or maybe a prolapse of the uterus. No, everything was ok there (ultrasound and exam). The pressure in the rectal area against the sacral area is awful. Pain doctor said pain not from ischial tuberosity but was referal pain from nerves from the degerative discs. 3 shots later I'm no better. I've been on Lyrica and Cymbalta since October. I'm not certain the little relief I had was not a placebo effect. I've been off both for 2 months and feel no worse or better, but my pocketbook is lighter. I'd also gained back 20 of the 60 pounds I lost last year. Hopefully I can get rid of part of that. But I am miserable. At work I am in tears 1/2 the day and only work 6 hours each day, but that is the longest 6 hours of my day. I sit for a living, drive 30 minues each way and cannot wait to lay down when I get home. Everyone says don't sit, but that is not possible.
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Avatar_f_tn
In your opinion, do you feel that the Lyrica helped? I was put on the Lyrica and Cymbalta a year ago for nerve pain. Seemed to help in the beginning but lost it's effectiveness.
Also, are you using the PT recommended by Dr Renney or someone you found on your own?
I have my phone appt with Renney in 2 weeks which seems like forever. Getting nervous. Is he easy to talk with? I really feel like I have the PN/PNE. I hope I can get some relief. If I cannot relief soon, I may try for disability.
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Avatar_f_tn
Sorry, I sent the previous comment to Jjtigg but was meant for you.
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Avatar_f_tn
Hi,

There is a possibility that you are suffering from pudendal neuralgia due to pudendal nerve entrapment.
This nerve entrapment is common in cyclists due to prolonged sitting, it can also be a result of trauma.
The most common symptoms are pain while sitting, pain in the perineum and anal regions since these area are supplied by the pudendal nerve.
Treatment options include nerve blocks, corticosteroids, neurontin and lastly surgery.
I would suggest you to get a complete clinical examination done to rule out other causes of your symptoms. Keep us posted.

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Avatar_m_tn
I had this happen to me following surgery for right femur neck dysplasia.  The surgery was long and was on my left side for about 5 hours.  It took years and 17 specialist before a diagnosis was confirmed by something called a SSEP test that showed latency on the left side affecting both the genitofemoral and the left lateral femoral cutanous nerve damage although damage at L4 could not be ruled out.  The SSEP was used because it can assess deeper nerves.  It's nice to know what caused by problem, but only oxycodne can relieve it.
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