Health Organization for Pudendal Education

Has anyone else I havent spoken too had pudendal nerve decompression surgery? Conway? Hibner? With anyone else? Please contact me if you have. I really really need to talk with people who have had this done. Im considering it for myself.

Make sure you check the surgical section of this site. What you will find, as I have, is that surgery is a LAST RESORT. Statistics on cure are are not favorable, and there is a very long recovery period. On enter with eyes wide open knowing all the surgeons and all the different approaches. I have this condition too, and will not consider surgery unless I am disabled to the degree that I cannot function. My opinion of course. Talk to as many people who have had the surgery as possible before making a decision. I do wish you well. This is a horrible condition to have. Sure, there are many worse, but there is so little progress being made on this rare disorder in terms of successful surgical resolution.

JIm

Hi Arora,
I'd be happy to speak with you over the phone regarding my case and get you in contact with other surgical patients who don't post on this board.
Kind regards,
Karyn

Karyn
How did your surgery with Dr. Conway turn out.. Thinking of using him......Robert

Hi Lightmail,
Surgery with Dr. C turned out great! I highly recommend him. Please feel free to browse my posts in Case Updates....
Kind regards,
Karyn

I have suffered over 20 years with PNE. I was told by many physicians that the pain was all in my head. I am now 38 and by the grace of God I was referred to Dr. Conway through my Primary Care Dr. Dr.Conway diagnosed my PNE in June 2010. I tried all conservative treatment with little relief. In fear of losing my job as a System Safety Engineer, which required 95% travel and sitting for long periods, I kept putting the surgery off and went about my daily lif despite the chronic, horrific pain. This past April the pain became so unbearable to the point I could no longer walk/function I had to let my boss in on my little secret and was immediately placed on Short Term Disability. That last flare up had me begging for surgery. Dr. Conway recommended surgery a year ago, however being the stubborn person I am I believed I would never again have another flare up (yes I was in denial). I made the call to Dr. Conway as soon as I could and by the next day I was given a date for surgery. On June 13 th I underwent a bilateral pudendal nerve decompression surgey using the trans-gluteal method. I will say the recovery period is going to take time. At 8 weeks post-op I am starting to feel some symptoms and then some pre-op, but this is absolutely expected. Nerve regeneration takes a long time, each day is diferent some days easier than others. However, there is no doubt in my mind that with rest and Physical Therapy my pain will greatly decrease. Staying positive has certainly helped me tremendously. I cannot say enough good about Dr. Conway, from the first time I met him, he made me feel at ease. He is wonderful surgeon, and his bedside manner is amazing. He truly cares about his patients. I give him an A+ and would highly recommend him. Please feel free to reply to my post with any questions and I would also be willing to give you my phone number to chat. Good luck!

Thanks so much for your post afrench. I feel that with the tenacity you displayed pre op you should do very well post
What did Dr Conway find, where were you entrapped?
Best wishes for your recovery.
Take care
Helen

AFrench!!!! I dont know if you wrote me a private message. Im still not able to read it even after deleting a few older messages. Could you please send cutt and paste the message you sent me to AroraNightfire@yahoo.com please. This is so bizzar, I dont know why this site wont display your message.

AFrench, you are right. It is a long recovery so you have to take it easy and resist the urge to try to do too much and cause yourself a flare-up. Wishing you all the best in your recovery.

Violet

I have always been a very active, upbeat, and independent person. For the most part I have a very positive outlook on life. My mom always tells me how sorry she feels for me, as I am so naive to what is going on in the world, etc. She tells me, "my dear daughter, you look at the world through "rose colored" glasses." BTW I have 3 pairs of rose colored glasses...I joke with her all the time and ask her to borrow my rose colored glasses to see if she notices anything positive in anyone or anything. I always look, and eventually find,the positives even in the worst of situations. Since surgery (10 weeks post-op) I feel extremely depressed the majority of the time, yet I have everything one could possibly want out of life. Being a former RN, I know that many people experience depression after surgery, but this long. It is so unlike me to feel so sad and stuck in this rut. Has anyone gone through a similar experience following PN decompression surgery?

I owe some replies to several of you and promise to get them out ASAP, I've just been an emotional wreck lately.

Thanks!

Angie