Pudendal Nerve Entrapment
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April 27, 2010 at 12:33 am
I was diagnosed with CIDP 10 years ago – woohoo an anniversary! For many of those years I have struggled to shift through what I call the chicken or the egg syndrome that comes with this disease meaning does CIDP cause something or does something irritate the CIDP and how do you figure it all out!
I have suffered with lower abdominal pain in my pelvis for at least 5-6 years. As this has gotten worse I embarked on the journey to narrow down if this was just another worsening of my CIDP or something else. I take lyrica and cymbalta and have IVIG every 3 weeks. I have been on every type of treatment and this seems to be the best protocol. I have been to Mayo Rochester 3 times over the years and they never paid much attention to my pelvic complaints and told me to followup at home. (South Dakota)
I have had a colonoscopy, laproscopic of the pelvis, mri for kidneys, OBGYN for endometriosis, physical therapy, chiropractic care, and and a number of other theories and drug therapies. No relief.
My OBGYN recently referred me to a pain clinic for a block to see if I could get some relief. Sometimes the pain is so bad I can’t walk. The anestheisiologist that treated me at the pain clinic offered his diagnosis which was – Pudendal Nerve Entrapment. (PNE) – After doing some reason – I am certain this is what I have.
I am wondering if anyone else has suffered from this condition and CIDP or heard of this. I had a pain block with steriods and have to wait for results and in the mean time I will be contacting my neurologist for guidance.
I would appreciate any feedback!
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April 27, 2010 at 8:40 am
Thank you for that info!!
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April 27, 2010 at 10:00 am
Lisa, I like you have similar issues. Fourteen months ago I started with severe pain in my groins. I spent several appointments with uroligist and several test with no idea what was wrong. as it spread I went twice to ER. After 11 doctors and a gauld bladder out, I finally decided on my own that it was nerves affected and went to a Neuroligist. He said I was fine and needed to go back to a uroligist. Thankfully I found a new neuroilgist and within days had a good dianosis and started treatment. I receive 40mg. IVIg every 28 days and my last visit was taken off all Advil and others similar medicine and put on Tramidal to protect my stomach. I keep pain from my diaphram down. I like you worry if I clump all pain as a side effect for CIDP. Each day brings new events. Hope this helps. Gene
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May 5, 2010 at 11:44 am
Hi Lisa, Sorry to hear you are having additional problems. My 4th anniversary is this month. I have not had any pelvic pain, I am also waaaaay older than you. Do you still see Dr. Z., I never went back to him.
If you come camping this summer – drop me a line and maybe we can chat . Hubby can get me into Yankton. I never had a face to face talk with a fellow CIDPer. Hope you feel better. Jean Johnson -
May 5, 2010 at 12:56 pm
Lisa,
I work for an insurance broker, and one of my clients has a work comp claim, and he has been diagnosed with pudendal nerve entrapment. I know that he is considering going to Mayo and also a spinal cord stimulator. I have been told though, that those never seem to work. He is going to a pain management clinic as well. I think that is not very common, so the docs are not sure what to do. Hope you find some relief. I have had some strange pelvic pain on and off for years, and the docs have not diagnosed me as well. I think that it is nerve related too.
Jessica
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May 5, 2010 at 1:24 pm
Lisa,
What was your experience at Mayo like? Was it worth it? How long were you there for? Did they redo all the tests that were already done? I have been considering a trip.
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