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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.
Gregg
Posts: 8
Joined: Fri Jul 15, 2011 4:43 pm

New to site

Post by Gregg »

I had bi-lateral pudendal nerve decompression surgery in September of 2010 with Dr. Antolak after trying self help, PT, injections etc. I am now 9+ months post op and still in quite a bit of pain, and cannot sit without a donut/toilet seat cushion for more than 15 minutes. Still taking 5mg of perciset 2X day for pain, plus 600mg's of Lyrica. I started PT 6 weeks ago with a professional who has dealt with a lot of pelvic floor challenges, but if I tweak the obtrator internus muscle AT ALL, it aggrevates the nerve for 4-5 days.

I am looking for some input and perspective from other patients who have had the same surgery to see if I am on track, way behind, kidding myself as to the possiblity of getting better, being able to sit, and getting some pain relief, etc. I look forward to joining the discussion. Gregg
Bi-lateral pudendal decompression surgery September 2010, Dr. Antolak. 54 years old, had radical prostatectomy in 2007 which may have contributed to this pain. Former runner, weight lifter etc. 10 months post op, very little improvement able to walk 15 minutes a day, little to no sitting
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Violet M
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Re: New to site

Post by Violet M »

Welcome Gregg,

I'm sorry to hear you are still having a difficult time. It's kind of hard to say what the possibility is of still getting better. Many people start seeing improvements by the 9/10th month post-op but for some people it takes a bit longer. I didn't start PT until almost a year post-op and was still having problems with the obturator internus irritating the nerve at that time. A TENS unit with the electrodes places properly and used for 2 hours a day helped quite a bit with calming down the OI -- more than internal work did. I wish I had some better answers for you.

Take care,

Violet M
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.
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: New to site

Post by nyt »

Maybe your PT needs to back off on how aggressive they are on the OI and go really, really slow. Violet's idea of a TENS unit is great. I use mine all the time.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
catherine a
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

Re: New to site

Post by catherine a »

Gregg,

I also couldn't tolerate phyiso. for well over a year after surgery. Even at 3 years post op I was still having a fair amount of pain. Do what you can tolerate. if it makes the pain worse, don't do it. In my experience some PT's think they're de-sensitising the nerve but in fact they are sensitising it even more. give it more time and don't give up hope that things will change. Keep yourself active and do the external physiotherapy to prevent piriformis pain. My OI muscle was extremely painful for almost 4 years but has now thankfully improved. The tiniest little touch used to set off extreme nerve pain.
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
Lernica
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Joined: Fri Jan 14, 2011 10:31 pm

Re: New to site

Post by Lernica »

What are the symptoms of obdurator internus muscle pain? Most of my pain these days is on the left side of the rectum, both externally and internally. (Coincidently (?) the same place where I recently had an anal fissure.) When I walk or swim, it feels like a muscle there is getting pulled or ripped apart. What muscle would that be? I'm not doing PT these days because of pain; otherwise I'd ask my PT that question.

I'm wondering whether I should see a colorectal surgeon or whether this is strictly PN pain (about which he knows nothing.) Thanks.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Gregg
Posts: 8
Joined: Fri Jul 15, 2011 4:43 pm

Re: New to site

Post by Gregg »

My PT, who is a pelvic floor specialist gave me stretches for the OI muscle, where she could feel a lot of tightness during exams. Each time I can feel a good stretch, but it must trigger some muscle spasms, because the pain level goes from a 2-3 to a 6-7 the next day, and it lasts 4 or 5 days. Definitely a cause and effect. She now has me may on my stomach, both legs straight out behind me. I "fold" one leg at a time at the knee until it is 90 degrees. Then very slowly, I rotate the leg back and forth-sort of let it fall (very controlled) to one side, then the other. I actually did get some good results that that exercise.
Bi-lateral pudendal decompression surgery September 2010, Dr. Antolak. 54 years old, had radical prostatectomy in 2007 which may have contributed to this pain. Former runner, weight lifter etc. 10 months post op, very little improvement able to walk 15 minutes a day, little to no sitting
Gregg
Posts: 8
Joined: Fri Jul 15, 2011 4:43 pm

Re: New to site

Post by Gregg »

Catherine, sounds like you have the OI muscle under control. Were there any exercises or stretches you were able to identify that helped heal that area? That is my primary trigger point for pain. Gregg
Bi-lateral pudendal decompression surgery September 2010, Dr. Antolak. 54 years old, had radical prostatectomy in 2007 which may have contributed to this pain. Former runner, weight lifter etc. 10 months post op, very little improvement able to walk 15 minutes a day, little to no sitting
Lernica
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Joined: Fri Jan 14, 2011 10:31 pm

Re: New to site

Post by Lernica »

Gregg wrote:My PT, who is a pelvic floor specialist gave me stretches for the OI muscle, where she could feel a lot of tightness during exams.
Where do you feel the tightness? Is it in the rectum area?
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Gregg
Posts: 8
Joined: Fri Jul 15, 2011 4:43 pm

Re: New to site

Post by Gregg »

Ground zero for my right side pain seems to be the muscle that wraps around my sit bone. When the PT massages me, she can feel tightness in that whole area. When I do stretches, I can feel the tightness in that same area, and in the piriformus muscle. My rectum pain is more like internal pressure, and that is almost constant.
Bi-lateral pudendal decompression surgery September 2010, Dr. Antolak. 54 years old, had radical prostatectomy in 2007 which may have contributed to this pain. Former runner, weight lifter etc. 10 months post op, very little improvement able to walk 15 minutes a day, little to no sitting
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Violet M
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Re: New to site

Post by Violet M »

Greg, I don't recall ever trying OI stretches. Be careful because if there is a nerve entrapment, for instance if the pudendal nerve is entrapped in fascia near the OI muscle, stretching can also stretch the nerve and cause further damage. I think the fact that you are having such a major flare-up afterward is a HUGE red flag.

Lernica, here's a link to a trigger point chart. http://tinyurl.com/66xo88d It could be the OI or one of the levator ani muscles -- coccygeus or puborectalis -- pain near the rectal area. Here is sort of a general idea of how to figure out which muscles are acting up....if you do an internal vaginal exam while lying down, the muscles toward the back will be the levator ani muscles, the ones toward the sides the obturator internus. The pudendal nerve runs between them. When my OI's were acting up it caused a lot of burning in the inner thighs and sides of vaginal walls.
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.
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