Health Organization for Pudendal Education

Our pediatrician sent me a letter today stating he would not write the order for a 3T MRI.
He also stated that while he knows this has been a frusterating process he has no understanding of the condition and can be of no help to us.
Is he rufusing to help her ???? IDK I am not sure how to take that. I am ok with MRI b/c I feel like that will lead us in a different direction to have it done. Prob have to go to NY and see Dr. Potter. ( I have to believe that everything happens for a reason) so this could be a blessing in dusguise.
She has had good couple of days. Itch still there but minimally. When she was laying on her tummy tonight itch moved to the rectal area.....is that possible??? how you sit, rest, or whatever can increase that????

Anyway, I guess we wait to see what Dr, Hibner has to say.
Hope everyone is feeling well this day. My thoughts are with you all, and the loved ones who are watching you suffer. We are helpless to help you and it makes us feel powerless!
Mom

Mom,
I get the impression she is still seeing a pelvic floor PT? If so, they can probably tell you who to see in the community who DOES have an understanding of pelvic pain syndromes. That person could write her the order for the 3T. That's what I did once I got into PT: Jumped ship on all my prior clueless practitioners and started seeing the people my PT recommended. A pelvic floor PT gets her referrals from somewhere, and should know who in town is well informed enough to help.

Oh my gosh I am so angry at that doctor! I want to hurt them. Yes, Hermajesty had a great great point! Also, Dr. Hibner can write the script and you can ask them via email/phone to write the script prior to your visit. They just did that for me today cause I was contemplating getting it redone w/Dr. Kalinkin to be sure (since I twitched during my Potter 3tesla... but Dr. Potter wrote me saying it was clear anyway so never mind. But her assistant also said Dr. Potter is more skilled at spotting things in the MRI even than Dr. K who has just learned her protocol... so I still think she's your best bet.) I know a doc who will for a fee write the script via a phone consult too (although she is worthless for much else). So the door is not closed. Just move on and move away from that terrible doctor. I am so angry about that right now! How dare they! I mean, what harm will an MRI do compared to the doc's pure ignorance and avoidance? ugh!!!!!!!!!!!!!

Also, perhaps HSS would do the treatment for free since she is a child as "research"?

When we are powerless, God is not. When I am weak, then I am strong. This is God's time to shine.

Thank you for the leads ladies. Thank you for the encouragement.
We are still seeing a PT. That is a great idea I will ask her.
This is definetly a roller coaster ride Every step forward seems to be followed by several steps back, b/c of Doctors innocent ignorance.
This forum is a life boat! We will keep moving forward, putting our trust in our heavenly father!
Mom

Mom, this may be a blessing that the ped dr. refused. I have found that many insurance companies won't approve MRI's if written by a general practioner but will if requested by a specialist. I think it is a great idea to call Dr. Hibner's office and see if they would order the 3T MRI with Dr. Potter for you and get the approval from the insurance company.

I am glad to hear she is having some better days. Sounds like PT might be helping, which is great. You and your family are in my prayers.

I know that weather affects neuropothy. Since 2/10 the barometric pressure has been 30. something and she has had very little itch or any other symptom for that matter. SO we are either getting better b/c of prayer or we have confirmed nueropothy.
Our flights are booked for our appt. with Hibner, and I am documenting daily her symptoms as well as the barometric pressure.
I am thanking God for this decrease in itch and tummy/pelvic pain.

Miracle@work I am still waiting eagerly and patiently for your PM

My thoughts are with all of you who are struggling today, missingmylife, I am fighting for you!
MOM

If you don't want to read about my faith EXIT kindly now.

Today 2/17 barometric pressure 29.9 She woke this morning feeling like she was going to throw up ( this always coincides with the tummy pain) She then said her bottom ( rectum) itched. She said that one time this morning. Then she says and these are her words not mine" MOM, it's like I can feel the itch triyng to travel through my nerve but then it's like the hand of God just stops it and it's not making me itch, but I can feel it trying" And then no itch the rest of today. ( 7 days now of little to no itch)

So my question is can you really feel the sensation, whether it is itch or pain "travel " through the nerve? I was just amazed that she used that description. And I am PRASING GOD that she is feeling his touch b/c of all the prayers being offered up. There is POWER in prayer

We are still on the Journey, I am still trusting, and beleiving.
We have not been to PT for 3 weeks now b/c something has alwasy come up at the last minute, but it is our intention to continue up until our appt. with Dr. Hibner
MOM

mom wrote:So my question is can you really feel the sensation, whether it is itch or pain "travel " through the nerve?

I absolutely can. Often while urinating I can feel my nerve tingling along its pathway--from the sit bone to the sacrum.

yes, you can feel it move along it's nerve routes. absolutely. I have felt lines move from my glutes to my alcock's canal once, and also feel it regularly moving in my labia minora... sometimes back to my sit bones. And when stool moves in the rectum, even gas, that moves the tingling and provokes it (which I guess is the itch or similar). The wanting to throw up thing sounds like food allergies. please please please check if she is intolerant to gluten dairy etc. or, she is backed up or slowed down somewhere so when the rectum moves, it sends gas upward and out too. That happens to me and to my daughter. When my daughter starts burping, it's cause she's constipated... when I am too constipated, really really constipated to the point it gives me a constipation migraine, I throw up unless I do an enema in time. You know, I used to say avoid miralax, but at this point, if it helps, why not use it occasionally along with stool softener and other stuff.

Pianogal,
I know I need to have that done just to be sure, but when she is inot having itch, she has NO tummy pain. The last week when the itch has been way less so has the tummy pain.

Today the pressure was 29.78 she had left calf ache and some itch.
I am still putting my trust in a higher power!
Leg massages seem to help. We did not make PT this week. ($75) per visit, insurance will not cover.
We go once a week. But have had crazy schedule recently.

MOM