More help needed after appointment with dr. and some more di
More help needed after appointment with dr. and some more di
I am not sure where to go from here now. My pudendal nerve test came back negative but Dr. Gordon still said this does not mean I do not have a pudendal nerve problem as that is what my symptoms present. He said I have definate tightness of the obturator internus muscles and I need pt for that. He also prescribed some vaginal diazapam suppositories. I have been fllared up for days now after the exam and nerve testing. My legs shook uncontrollably from the pain of him prodding the obturator internus muscles during hte nerve testing. I still flare after a bowel movement. Symptoms are always delayed. I'm just confused as to why the nerve test came out negative I guess. And I can't see how pt can help that muscle if I cannot bear it touched. Any ifo from anyone?
Re: More help needed after appointment with dr. and some mor
Hi Chex,
Sorry, you have had such a nasty flare-up. That's what used to happen to me after any internal exams or internal work.
I'm not sure what test you had done exactly but if it's the EMG or PNMLT, my understanding is that these tests measure the motor conduction of the nerve but do not test the sensory function of the nerve. If the test comes back abnormal, that shows there is abnormal motor conduction of the nerve but if the test comes back normal, it means there is normal motor function but not necessarily normal sensory function.
I think it's worth it to see the the physical therapist for an evaluation just to add more pieces to the puzzle. Just make sure you are seeing someone who is trained in treating pudendal nerve entrapment and evaluating related problems such as pelvic instability and misalignment. I think you will know very soon whether the therapies they suggest are going to help.
In the end my instincts told me that internal PT work wasn't going to work for me which is why I opted for surgery -- but I'm glad I at least tried it.
Hope it goes well for you.
Violet
Sorry, you have had such a nasty flare-up. That's what used to happen to me after any internal exams or internal work.
I'm not sure what test you had done exactly but if it's the EMG or PNMLT, my understanding is that these tests measure the motor conduction of the nerve but do not test the sensory function of the nerve. If the test comes back abnormal, that shows there is abnormal motor conduction of the nerve but if the test comes back normal, it means there is normal motor function but not necessarily normal sensory function.
I think it's worth it to see the the physical therapist for an evaluation just to add more pieces to the puzzle. Just make sure you are seeing someone who is trained in treating pudendal nerve entrapment and evaluating related problems such as pelvic instability and misalignment. I think you will know very soon whether the therapies they suggest are going to help.
In the end my instincts told me that internal PT work wasn't going to work for me which is why I opted for surgery -- but I'm glad I at least tried it.
Hope it goes well for you.
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.
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: More help needed after appointment with dr. and some mor
sometime pain in the genital region can be caused by nerves in the inguinal canal (ilioinguinal, genitofemoral, iliohypogastric), and this can mimic pudendal pain. Those nerves should be tested too before proceeding on the assumption that you have a problem with the pudendal nerve.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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catherine a
- Posts: 291
- Joined: Sat Sep 18, 2010 4:46 am
- Location: Perth Western Australia
Re: More help needed after appointment with dr. and some mor
PT should be tried weekly for about 12 sessions or 3 months. If it doesn't help or if the flares are worse then it's time to re-evaluate and consider that you definitely have a nerve issue. Keep in mind that some people do very well with regular PT but for some (including myself) it was clear that PT wasn't helping at all. I had the PNMLT done too and it came back normal. My Neurologist told me my problem must be muscular. He sent me back to PT. It wasn't until I found more information that I discovered he didn't even talk about the 'sensory' function. He didn't believe I had Pudendal Nerve Entrapment. It took me 3 years to finally realise that I wasn't getting any better despite all the treatments I had. ie: PT, Botox, Nerve blocks. I had no choices left and made the decision to travel to France. A long, painful, expensive journey but worth every cent. 5 years on, I'm doing GREAT...... Imperative you seek out a PT who is knowledgeable in Pudendal nerve issues. Don't waste money or time going to those who can't help.
Catherine
Catherine
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.
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catherine a
- Posts: 291
- Joined: Sat Sep 18, 2010 4:46 am
- Location: Perth Western Australia
Re: More help needed after appointment with dr. and some mor
Botox to the obturator muscle could help it relax. It did for me but after 8 -10 weeks it tightened up again. After PNE surgery, it all settled down although it did take a few years to get there. I still have some tightness in the right side Obturator muscle whenever I'm a bit constipated. Not very often though, just when my diet changes like it does when travelling etc. If I stick to my regular diet, I don't get constipated.
Catherine.
Catherine.
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.
Re: More help needed after appointment with dr. and some mor
Hello,
I had Botox in my OI muscle. I think it helped me for a little bit, but I definitely needed the surgery. PT can cause some flare ups, but can be helpful in the long run. I would definitely try PT first and if you are not getting the desired results, you could definitely think about doing Botox.
I hope this helps.
Take care,
Wendy
I had Botox in my OI muscle. I think it helped me for a little bit, but I definitely needed the surgery. PT can cause some flare ups, but can be helpful in the long run. I would definitely try PT first and if you are not getting the desired results, you could definitely think about doing Botox.
I hope this helps.
Take care,
Wendy
Unlilateral Surgery 9/27/07 - Dr. Conway
Redo Unlilateral Surgery 10/15/10 - With Dr. Hibner AND Dr. Conway
Results - Fantastic!
Redo Unlilateral Surgery 10/15/10 - With Dr. Hibner AND Dr. Conway
Results - Fantastic!
Re: More help needed after appointment with dr. and some mor
You might find that you can only do PT if you have botox. I know that is the case with me. There is now way I can tolerate anyone working on my obturator internus without botox first as it is too tender and causes me to flare.
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
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
Re: More help needed after appointment with dr. and some mor
Chex,
I assume that Dr. G. suggested that you see Nelly Faghani, pelvic PT? She's his go-to PT. She's my PT and she's the best! Knows all about PN, is very gentle, will take it very slow with you. I encourage you to at least see her once. If you don't want her doing internal work, she can start with external work on your tummy, thighs, etc. You will not regret meeting her.
I assume that Dr. G. suggested that you see Nelly Faghani, pelvic PT? She's his go-to PT. She's my PT and she's the best! Knows all about PN, is very gentle, will take it very slow with you. I encourage you to at least see her once. If you don't want her doing internal work, she can start with external work on your tummy, thighs, etc. You will not regret meeting her.
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
Re: More help needed after appointment with dr. and some mor
Yes he referred me to Nellie. Nellie in turn reffered me to Caroline Allen in Ottawa as that is only 2 hrs from where I am rather than 6. Nellie said she trained Carloine herself. I have been twice but I do flare after and get alot of buzzing. She gives me homework to do myself proding inside with my thumb and pressing on tender points.