Health Organization for Pudendal Education

I have had clitoral pain, arousal disorder, and frequency and urgency for three years. From regular testing (ct scan, MRI, and pelvic sonogram) nothing has shown up. I have the list of North American pudental nerve doctors, and I am trying to figure out which would be the best route to go in diagnosing what is wrong with me. After much research, i am convinced something is wrong with my pudental nerve. I just spoke with my pelvic pain Dr., and we discussed three possible options. One would be an MRI with Dr. Potter. One would be EMG testing with Dr. Conway, and one would be at the institute for nerve medicine at John Hopkins where they would do Dr. Filler's test. I am in a tremendous amt. of pain, and after three years, i am very depressed. i know I need to be proactive, but I am confused. I am willing to travel anywhere in the country to get a diagnosis and get the proper help. As i look at this list of doctors i am overwhelmed and confused. Can anyone give me any suggestions or tell me which route they have gone and gotten bad or good results? thank you for any help you can give me. i had three abdominal surgeries before this started and have an abdomen full of scar tissue. thank you again.
Krisssy

Krisssy,

May I ask what your abdominal surgeries were for?

Go for the MRI with Dr. Potter. Your insurance company should pay for it they won't pay for the MRN with Dr. Filler. My MRI with Dr. Potter's matched my pudendal symptoms almost exactly. As far as pudendal dr.'s go, that is a very personal decision. There is a lot of information on this forum about the different pudendal dr.'s and you will need to do your homework to see if there is one you would like to see. Also, if you go to one of the PN dr.'s and you don't feel like they are a good match for you then you can always go to someone else. If your current pelvic pain specialist thinks you have PN does this physician feel like they can manage your pain with medication and/or PT?

Go for the MRI with Dr. Potter. Your insurance company should pay for it they won't pay for the MRN with Dr. Filler. My MRI with Dr. Potter's matched my pudendal symptoms almost exactly. As far as pudendal dr.'s go, that is a very personal decision. There is a lot of information on this forum about the different pudendal dr.'s and you will need to do your homework to see if there is one you would like to see. Also, if you go to one of the PN dr.'s and you don't feel like they are a good match for you then you can always go to someone else. If your current pelvic pain specialist thinks you have PN does this physician feel like they can manage your pain with medication and/or PT?

Hi Krissy,
Welcome to HOPE! I'm sorry for all the surgeries you've already had to undergo and that you're still in so much pain.
I agree with NYT. Please try to get a script for a 3T MRI with Dr. Potter in NY!
Wishing you the best ....
Warm regards,
Karyn

Lernica wrote:Krisssy,

May I ask what your abdominal surgeries were for?

In 2004, I had a resection done to correct a prolapsed rectum. In 2005, my scar tissue had wrapped around my colon causing an obstruction and an emergency surgery. The same thing happened again in 2007. In 2008, my pain began, and it has continued for 3 years. Krisssy

nyt wrote:Go for the MRI with Dr. Potter. Your insurance company should pay for it they won't pay for the MRN with Dr. Filler. My MRI with Dr. Potter's matched my pudendal symptoms almost exactly. As far as pudendal dr.'s go, that is a very personal decision. There is a lot of information on this forum about the different pudendal dr.'s and you will need to do your homework to see if there is one you would like to see. Also, if you go to one of the PN dr.'s and you don't feel like they are a good match for you then you can always go to someone else. If your current pelvic pain specialist thinks you have PN does this physician feel like they can manage your pain with medication and/or PT?

My pelvic painDr. thinks he can treat me with medications, unguided nerve blocks,bladder installations for IC and physical therapy. The medications are not working, and physical therapy and different medications have not worked in the past three years. I have researched my condition and found that I have the symptoms of PN especially with the bad cliteral pain and the arousal disorder which was made worse with physical therapy. So I am going to get a prescrition for /Dr. Potter this week. It is easy for me as I live in NY. Then I intend to make appointments with Dr.s Conway, Hibner and /Renney which I should have done a long time ago. Krisssy

Kris, you could go ahead and make appointments with PN docs but the results of your MRI with Dr. Potter may help you decide which doc you want to see. For instance if the MRI shows you have scar tissue in the area of the dorsal clitoral nerve you may want to consider Dr. Dellon because he uses a different approach for that nerve.

Violet

Krisssy wrote:
In 2004, I had a resection done to correct a prolapsed rectum. In 2005, my scar tissue had wrapped around my colon causing an obstruction and an emergency surgery. The same thing happened again in 2007. In 2008, my pain began, and it has continued for 3 years. Krisssy

My goodness, Krisssy, what an ordeal you've been through! I hope you have better days ahead.

I've had multiple pelvic surgeries for endometriosis, culminating in a hysterectomy last year. And here we are now, after all those surgeries, no better off. Very frustrating.

The Potter MRI showed scar tissue in the dorsal pudental nerve leading to the clitoris, and that is exactly where the pain us. Unfortunately, I can't afford Dr. Dillon. Do you think there is any chance that Dr. Hibner or Conway could help me? krisssy