Health Organization for Pudendal Education

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?

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

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.

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

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.

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

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.

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.

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.