pudendal nerve pain?

[1snowy]

Hi,
I've had pain sitting down since November.  Since then I've had a pelvic CT with dye, a laparoscopy, my appendix out, my tubes tied, a colonoscopy, a barium enema, and a colon resection for a twist in my colon.  

After all of this, I'm still in pain!  :(

My doctor says to give it 3 more months to allow the colon to heal completely in case my discomfort is just coming from the surgery.  

Sitting causes pain and a burning sensation in the perineum.  Also, there is pain in my rectum and occasionally my vaginal area.  On some days I can tell that there is swelling in the perineum.

My only real comfort is lying down, sitting in the bath tub, or sitting on a toilet seat.  These symptoms sound like the ones I've read about pudendal nerve trouble.

Does anyone have advice?  

I live near Memphis, TN and was wondering if there are any doctors in the area with expertise in pudendal nerve pain.

Your help is much appreciated!

Molly

[txtoy2012]

Hi! Reading about your pain and problems with PNE. I see that the blog is from a few years ago. Is there any way you could let me know how things went with Dr. Renney?? How are you doing? I have a friend that has been suffering with the same thing for the past 4 years and just turned 47. He is in constant pain & in bed. He is no longer able to work, drive or have any kind of life that a man his age should. Please share any information you have. Thanks

[penrod]

I see that your posting was in 2008 and you were to come to Texas for surgery by Dr. Renney.  My question is did he do you any good or are you still having problems.  I have the same symttoms you had.  Thanks

[Laughter]

Hi,
I have spend 4 years and seen over 40 Dr.'s in the Seattle area with the same symptoms. I have Pudendal Nerve Entrapment.
It started in Oct. of 2003.
My children had to go live with their father and I had to bring in a caregiver to help me because I can do very little. I can't sit and even lying down on my back or on my sides is near impossible. I just pace back and forth all day.

doctors have said it was all in my head but I never gave up. Docters hate being told what you think you have. I had exploritory surgery to see if the pain was caused from scar tissue left from years of endometriosis or from my past hystorectomy. They found nothing. I saw digestive health specialists, still nothing. I have had MRI's CT scans x-rays, bone scans...everything.

I have spent over $100,000 of my life savings. Last year I spend $28,000. Every year since 2003 I spend at least 2 weeks in the hospital because the pain becomes unmanagable.

You will not find any Dr.;s locally. Don't waste any time. The longer you wait the more damage you will do. I have seen the best Dr.';s in the US. Dr. Stanley Antolak in Minnesota had the condition and went to france for surgery, He brought the proceedure back to the Mayo clinic where he was head of urology. He left the Mayo clinic and started the Clinic for Urologic and Pelvic Pain in Lake Elmo Minnesota. He now diagnosis and performs the sugery. He was the first to diagnos me in Feb. of 2005. I liked him but decided to see the Dr. in Texas because I feel they have a better program Dr. Renney also had this condition and had surgery nin France. He took a team of 4 dr.;s back to France for training. the Dr. the does the surgery, Dr. Lee Ansell is a neurosurgin not just a urologist like Dr. Antolak.

I went down to Texas in Feb. of this year. I spent 3 days there. I first saw Dr. Renney for a evaluation and x-rays. I then saw Dr. Popeney who performed some very painful nerve testing. Then I saw a neorlogist who gave me 4 CT guided nerve blocks. These nerve blocks will remove your pain completely if you have Pudendal Nerve Entrapment. It only will last a few hours. the last Dr. I saw was Dr. Lee Ansell. He performs the surgery. He reviewed all the notes from the other Dr.s and decided I am a cantidate for decompression sugery. Both my left and right side are affected though the pain on my left side is more intence. i have bowel and bladder problems. I have been diagnosis with Intersticial Cystitis.

I am leaving Seattle next Tues the 25th and am having surgery on the 26th. This sugery is considered a last resort. Don't wiat as long as I did.
The only thing that you can ask for locally would be a EMG and a SEP of the pudendal  nerve. There will be no Dr.'s that can do the other diagnostics tests. the EMG sould confirn you have some sort of damage to your pudendal nerve. Once you have this please google PNE docters. You will find all the information on the Texas team.
You will need to register on a secure email site and set up a phone conferance with Dr. Renney. He will call you. You will have about 15 min. to tell him your symptoms and why you think you have PNE. If he feels you may have it he will set up 5 Dr. appointments over 3 days. At the end of your 3rd day you will know if you are a cantidate.

Don't wait. I am only 44 years old. I have lost so much. You don't have to suffer any more. I can't express enough...you will not find a local Dr. who knows about or can treat Pudendal Nerve Entrapment. Don't let one more Dr. tell you it's just pelvic pain and it's in your head, just deal with it.

God Bless. Let me know if I can answer any more questions,
Leanne in Seattle