Pudendal Decompression?

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
AroraNightfire
Posts: 60
Joined: Mon Mar 12, 2012 9:39 pm

Pudendal Decompression?

Post by AroraNightfire »

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.
konedog4
Posts: 192
Joined: Thu Sep 01, 2011 3:42 am

Re: Pudendal Decompression?

Post by konedog4 »

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
User avatar
Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Pudendal Decompression?

Post by Karyn »

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
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
lightmail
Posts: 98
Joined: Mon Sep 12, 2011 6:19 am

Re: Pudendal Decompression?

Post by lightmail »

Karyn
How did your surgery with Dr. Conway turn out.. Thinking of using him......Robert
User avatar
Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Pudendal Decompression?

Post by Karyn »

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
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
afrench1974
Posts: 2
Joined: Sat Jul 07, 2012 6:16 pm
Location: New Hampshire

Re: Pudendal Decompression?

Post by afrench1974 »

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!
* age 4 chronic urinary tract infection symptoms despite infection
* age 5 first gynecological exam (horrified)
* teens, 20's, 30's episodes of extreme pelvic/rectal pain amongst other symptoms (i.e. burning upon urination, chronic constipation, pain during or after BM, vaginal/rectal pain/pressure (sensation of heavy rock in vagina/rectum), sciatica, painful intercourse led to abstinence, stabbing pain vaginal/rectal, hip/low back pain, etc.)
Cause of PN related to multiple falls
User avatar
helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Pudendal Decompression?

Post by helenlegs 11 »

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
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
AroraNightfire
Posts: 60
Joined: Mon Mar 12, 2012 9:39 pm

Re: Pudendal Decompression?

Post by AroraNightfire »

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.
User avatar
Violet M
Posts: 7183
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Pudendal Decompression?

Post by Violet M »

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
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
afrench1974
Posts: 2
Joined: Sat Jul 07, 2012 6:16 pm
Location: New Hampshire

Re: Pudendal Decompression?

Post by afrench1974 »

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
* age 4 chronic urinary tract infection symptoms despite infection
* age 5 first gynecological exam (horrified)
* teens, 20's, 30's episodes of extreme pelvic/rectal pain amongst other symptoms (i.e. burning upon urination, chronic constipation, pain during or after BM, vaginal/rectal pain/pressure (sensation of heavy rock in vagina/rectum), sciatica, painful intercourse led to abstinence, stabbing pain vaginal/rectal, hip/low back pain, etc.)
Cause of PN related to multiple falls
Post Reply

Return to “WELCOME CENTER”