The Journey of a child

[Violet M]

The three branches of the pudendal nerve innervate the clitoral, labial/perineal, and anal areas. Since your daughter is having symptoms in all 3 areas there is a chance that the nerve is experiencing trauma in the main trunk of the pudendal before it branches off to these areas. I agree with HM -- if the exercises are increasing the symptoms it's hard to see how continuing them makes any sense! I am quite certain that continuing PT exercises helped push me over the edge from itch/mild pain to severe pain.

[mom]

HerMajesty,
are there any PT exercises that you do that help?

[mom]

Also I was thinking about doing the excersises one at a time with time time in between to see if I could isolate which one caused the itch
any thoughts on that?

[HerMajesty]

Mom, I was doing PT exercises before I had my pelvis manually corrected. I don't do any now. I was doing a generic set of excercises that the pelvic floor PT clinic I was going to, progressed all their patients through. The purpose of the program was to stretch / relax the pelvis floor while strengthening the muscles that support the pelvic girdle (mainly glutes & transverse abs). In other words, traditional pelvic floor PT excercises.
I would never recommend any because the same exercises that were helpful to me have harmed other patients on this board due to the individuality of each person's pathology. They also only helped give very minor temporary relief to my pudendal symptoms. The only permanent gains I made in pelvic floor PT was a partial improvement of neurogenic bladder symptoms. Having my pelvis realigned entirely corrected the bladder problem and much improved the neuropathic itch, which is why I no longer bother with the exercises.
I don't think the strengthening excercises helped me with anything except the bladder issue. Stretching might have helped the itch a little. I think the potential value of excercise PT is not worth the risk for pudendal patients and that you need to pursue manual realignment of the pelvis, not an excercise program.

[pianogal]

No more daily exercises. It's not worth it. the exact correlation between intensified itching and new itch locations with minor minor exercise tells me that the exercises are not doing any good, nor will they continue to, and they seem likely to make matters worse. Perhaps muscle spasm is trapping the nerve, or an anatomic abnormality, or constipation or something, but exercise is only danger to make this worse.

But, I think you have a good idea on trying each exercise in isolation. Separate them maybe by 3 days to let spasmed muscles relax for a clearer result... and trying one exercise at a time, see if they all provide itching or only a few, and that will provide more info about the location of her problems, the muscles involved, etc. And maybe if one is safe, you could keep going, but I'm not sure about that.

The problems with PNE is that once new stages of pain are attained, it is very hard to go backwards from that point... so there is no need ever to continue an activity that creates pain, because although minor flares can be recovered from... we've all had points where the pain built and we couldn't bring it back when our symptoms first developed into full blown PNE... and if we could all go back and not do whatever it was that made that pain develop, we would. So... I don't think it's worth pursuing further exercise. Just my opinion.

But people with lower levels of pain can recover easier I think. I hope!

But...You learned something from the exercise... and that is clinical findings you can share with PNE doctors to analyze.

You and her are in my prayers and my heart.

By the way, I'd discreetly put cushions on all her chairs right now, just as a preventative measure. Just make the chairs "pretty".

[mom]

Thanks Pianogirl. I really appreciate your info and suggestions.

Also just another update....we have been on the bladder diet for 2 days now and abdominal pian has been considerably less!
Is there any correlation that PNE would cause increased sensitivity to the bladder?? Just curious B/C I have seen several people with PNE that also have sensitivity to "food" or the things in food on this sight.

[HerMajesty]

The purpose of the bladder diet is to protect the bladder wall. This is useful for interstitial cystitis, in which the bladder wall becomes inflammed, irritated, and will bleed if stretched in a hydrodistension procedure.
PNE is a kind of a "sister disorder" to interstitial cystitis: That is, it is not unusual to get both at once as a result of abnormalities in the pelvic structures.
As you know that her pelvis is not aligned, it is safe to assume there is traction of various pelvic structures. This not only offers a mechanism for the pudendal nerve to become entrapped, but also can cause muscular spasticity. Muscle spasticity in the pelvis has been demonstrated through research to be one possible cause of interstitial cystitis. This is due to nerve feedback from the spastic muscles to the bladder nerves, not necessarily pudendal nerve.
The problem with the bladder diet is that while it is a form of self care which will decrease symptoms, it does not correct the underlying problem. I learned to manage interstitial cystitis very well and never had my underlying problem corrected, and here I am. That is great that the bladder diet is helping her to be more comfortable but please do not confuse it with a cure.

[mom]

Thanks HerMajesty,

no no I will not mistake it for a cure b/c the main issue, both physically and mentally is dealing with this constant genital itch that she has.
It is pretty severe. All day every day for 2 1/2 years.
I prob. need to go with the EMG. Can't that locate a compression or entrapment, or am I misunderstanding this test?

Is a PT capable of doing an EMG or does it need to be with a specialist?

[HerMajesty]

A PT cannot do an EMG; this is a neurologic test. All neurologists do EMG but pudendal EMG is more specialized. I assume even more so for pediatric. You should be able to post in the "neurologic testing" section of this board to get a recommendation for your area or tips on how to find a practitioner.

[Karyn]

I prob. need to go with the EMG. Can't that locate a compression or entrapment, or am I misunderstanding this test?

No, an EMG can't locate an entrapment. All it does is measure nerve conductivity. I also want to add that this test is extremely painful. They jam needles into the most sensative areas of your private parts and then zap them with electricity. I wouldn't wish this test on anyone, let alone a little girl. Is it at all possible for you to travel to NY for a 3T MRI with Dr. Hollis Potter?
Warm regards,
Karyn