Health Organization for Pudendal Education

You ALL are awesome! I appreciate your input so much.
Bobbi

PT APPOINTMENT

We had our PT appt. today.
We were given the bladder diet to try and just see if that could be contributing to the "tummy pain". Also through logging intake I discovered she is not drinking enough fluids at all.

Also her left leg is a little longer than the right, so her pelvis is out of alignment slightly. We were given excersises to do at home for strengthening. I asked about chiropractic care to get the pelvis/hip into alighnment and she said she does recomend that for such a little girl.

Anyone have any opinion on that?

We will visit with her once a week leading up to our nuerology appt.
I will have her on the bladder diet strictly starting tomorrow and keep you all posted as to any relief from that. She thought maybe the itch was systemic (?) but doesn't that mean it is a mental thing? I know by observance that it is not! You aren't fine one day and then next have an intense itch that hasen't gone away in 2 1/2 years that only affects your private area. She has NEVER itched ANYWHERE else. She does not have a rash, no other body parts itch, just her clitoral and labia area. That has not changed since she was 4. She has ALWAYS pointed to the same area. Specifically her clitoris and the surrounding area.

Any way the PT was very kind and very good with her.

Your input is welcome.

Hi Mom,

It's good to hear that you are figuring out a few things and hopefully one of them will finally be the answer for your little girl.

Do you know if the physical therapist is experienced in treating people with pudendal nerve entrapment? The reason I am asking is because sometimes the exercises they prescribe can actually damage the nerve more if there is an entrapment. Suppose your daughter was born with the nerve entangled in the sacrotuberous ligament and the PT prescribes some stretches or an exercise that causes the ligament to rub against the nerve. You can imagine what might happen to the nerve. So please be careful and make sure you are working with professionals who understand how to work with someone who has a possible nerve entrapment.

Also, strengthening exercises alone may not correct a misalignment. Hermajesty can give you a much better explanation of correcting an alignment than I can. I agree with your doctor about the chiro -- some of the ones I've been to have been pretty intense.

I wonder what the physician means by systemic. Here are the most common definitions of systemic:

http://dictionary.reference.com/browse/systemic
sys·tem·ic   
[si-stem-ik] Show IPA
–adjective
1.
of or pertaining to a system.
2.
Physiology, Pathology .
a.
pertaining to or affecting the body as a whole.
b.
pertaining to or affecting a particular body system.


Take either one of those definitions and basically this physician is telling you nothing. Obviously, it's not affecting your child's body as a whole. Yes, it is affecting a particular body system but you already know that. So basically she has told you nothing.

If your daughter has interstitial cystitis maybe (and that's a big maybe) the diet will help but if it's a pudendal nerve problem the diet is not likely to change anything -- but it's probably worth a try to see.

Were you able to discuss the possibility of pudendal neuropathy with this doctor?

(warning: rant below)

My pelvis being out of alignment and not corrected as a kid is what has caused me 25 years of chronic health problems so I cannot see NOT getting it re-aligned.
I work with Jerry Hesch, the PT who fixed my pelvis and also my son's. He has developed his own method (Hesch Method), which is definitely appropriate for children because it uses gentle forces: if you have any Physics 101 background you would call it low load, long duration treatments. This means he will use a gentle force continually for 2-5 minutes for correction, instead of a rough torquing motion. I believe that is why the PT recommended against chiropractic adjustment: Because she does not want a forceful adjustment used on a child. However, SOME adjustment is needed. If the pelvis is stuck out of place such that one leg is longer than the other, exercises will not re-align this. Excercises are geared towards developing muscle to keep a hypermobile pelvis in place, but in order to keep it in place, first it must BE in place. I have a bias towards Hesch Method and could tell you where to go for care if you PM me with your geographic area; however I also doubt there is harm in trying chiropractic if the method used is gentle traction instead of torquing.
There IS harm in no adjustment. My son's pelvis was out of place from at least the age of 8, when he started to have his first symptoms, until the age of 12 when we met Jerry Hesch and got him adjusted. Due to his young age when his pelvis went out of alignment, his acetabulum (the socket part of the ball-and-socket hip joint) developed with an abnormal shape and as he is already 5'10" and has probably done most of his growing, he will most likely always walk with his right foot pointed outward.
I was already my full height when my pelvis went out (symptoms started age 14), but I have tons of secondary damage due to having a misaligned pelvis for a prolonged period. The pelvis is the kinetic center of the body and a misalignment there will throw you out of whack from head to toe. So I had in addition to 25 years of pelvic pain syndrome: 25 years of migraine syndrome with headaches, optical migraines, and vertigo and also a small clot on my brain, from my neck being locked up. I also have muscular tightness all over my body and neuropathy in my hands and feet with reduced strength and reflexes in both. Also re-aligning my pelvis did not alleviate my pelvic symptoms as it did for my son, only improved them: I have developed cysts filled with cerebrospinal fluid on my S2 nerve roots which are suspected in the remaining symptoms. They are caused either by that or the muscle damage and I am working on figuring out which to try to get further relief.
So in conclusion I just have to say again: How could a PT NOT want you to have your daughter's pelvis re-aligned????

I will take this info to the PT. I got her info from this website.
She recomended resistance stretch with a band around the knees pulling the knees apart ( knees being bent while she is on her back)
also gently a slowly lifting her pelvis up off the floor while pressing her back in to the floor (bridge)
And glute tighting exercises.
Would these be harmful if there is PNE ?????

HerMajesty, do you think I should take her to a pediatric chiro????
I will ask the PT about the hesch method.
She did have her lay flat, press her right knee to the floor ( to keep that leg straight) and then bend the left knee and the PT pressed down on the bent knee telling my daughter to push against her, she thought that might pull that hip into place? ( from the best of my understanding)

It does sound like she was trying to do a gentle adjustment herself; if she has PT manual therapy skills to do adjustments this might be why she does not want a chiro working on your daughter. Next visit I would clarify with her whether she believes she has the manual therapy skills to adjust the pelvis back into place, or whether you should be referred out for that. Manual Therapy is a small sub-specialty of PT that involves adjusting joints. Hesch Method is one of the Manual Therapy methods and I happen to believe it is the best; but there are certainly others.
The exercises she has your daughter doing are very individual: They help some people with PN and hurt others. The key is, if your daughter feels better afterwards let it continue and if she feels worse put a stop to it. I did always feel somewhat better after PT excercise even when my pelvis was still out of place. But a lot of pNE patients flare from those same excercises. The thing that is a fallacy is when you are told "work through it because you have to feel worse before you will feel better". If it hurts, (or in your daughter's case itches), that is a signal to stop.

A PT should do the adjustment, NOT a CHIRO!!!!!!!!!

If your PT doesn't know how to do this, move on! A Chiro's knowledge base is at least half of a PT's, but their "selling their practice" tendencies are 100% more than a PT's. They are motivated to make a profit, not to help cure, and their procedures must be done repeatedly... they are often too harsh, not specific to the situation at hand, and ignorant.

Please if you get her aligned, GO TO A PT! All PT's know how to do pelvic alignments, even ones that are not pelvic PT's. If your PT was a nimwit, get another one! My husband is a PT, he has his Doctorate, as most PT's are required to have these days. Even so, you need to find one specialized in Pelvic PT. My husband, even with his Doctorate, does not specialize in Pelvic PT. But he would be safer than a Chiropracter. Going to a Chiropracter is like cooking Thanksgiving Dinner by throwing all the ingredients in the pot and cooking them all at the same temperature. There is little expertise besides torquing people around... even amongst the ones who do more gentle Chiro, the gentler Chiropracters are basically trying to do Physical Therapy, but without the degree.

And if she is getting worse with PT, increases in pain, stop it and find a new one! I know from experience that a good PT will not make you get worse even if it's painful at the time or shortly after, but a bad PT can. PT should be gentle and bearable for the most part.

agreed pianogal.

ok, we did our home PT exercises this morning.
Bridges, 10 reps, Glut sets, 10 reps, Hip external rotation with orange tubing, 6 reps

imeadiately after her itch intensified, but she also had anal itching, we have only experienced a cuople of times since all the itch began.
I had always attributed the anal itch to improper wiping bieng she is a child and all, and like I said it has only happened a couple of times.
But after today I am wondering could the anal itch be a corelation to the clitoral/labial itch????
Just curious, and if so what is the link? Did the exercise cause this?

I applied vagisil itch and after about 10 min, itch seems to be under control.

My main, most horrible symptom is anal itch; yes it is pudendal associated and STOP those excercises, I don't care if I am not qualified to tell you that I just did anyhow!